Key working position paper final november 2012comp by Stockport

Key working: improving outcomes for all Evidence, provision, systems and structures

Key working: improving outcomes for all

Contents 1

Purpose of this paper ..................................................................................................... 4

What is key working? ..................................................................................................... 5 2.1

Defining key working .............................................................................................................5

2.2

Key working functions ...........................................................................................................7

Who should perform these key working functions?........................................................ 9

What are the benefits of a key working approach? ........................................................ 9 4.1

Strategic opportunities ..........................................................................................................9

4.2

Opportunities for families ....................................................................................................12

4.3

Opportunities for practitioners .............................................................................................13

4.4

Facilitating elements of statutory reform .............................................................................13

Key working functions in practice ................................................................................. 14 5.1

Model of key working ..........................................................................................................15

5.2

Intensive level of support ....................................................................................................16

5.3

High level of support ...........................................................................................................20

5.4

Moderate level of support....................................................................................................23

5.5

Section 5 summary .............................................................................................................27

The effectiveness of key working ................................................................................. 29 6.1: Information and specialist support ........................................................................................30 6.2: Emotional and practical support ............................................................................................32 6.3: Coordination ..........................................................................................................................35 6.4: Planning and joint assessment .............................................................................................38

What are the barriers to key working and how can we overcome them?..................... 40

Systems, processes and structures ............................................................................. 44 8.1

Accountability structures .....................................................................................................45

8.2

Joint commissioning ............................................................................................................46

8.3

Information sharing agreements .........................................................................................46

8.4

Supervision and management ............................................................................................48

8.5

Professional development...................................................................................................48

8.6

Awareness raising ...............................................................................................................48

What about the costs?.................................................................................................. 48

About us and acknowledgements .............................................................................. 50

Appendix A: Mapping key working functions to domains in the NHS outcomes framework ........................................................................................................................................... 51 2

Key working: improving outcomes for all

Appendix B: Example of a key working charter.................................................................. 55 Appendix C: Details of the systems and structures that could underpin a key working approach ............................................................................................................................ 56 Health & Wellbeing Boards ..........................................................................................................56 NHS Commissioning Board .........................................................................................................56 Clinical Commissioning Groups (CCGs) ......................................................................................57 The NHS Outcomes Framework ..................................................................................................58 Joint strategic needs assessment(JSNA) ....................................................................................61 Key working coordinator...............................................................................................................62 Example of key working coordinator role .....................................................................................62

Appendix D: Example of an Information Sharing Protocol (ISP) to support key working... 64 Part A – Introduction to this ISP ......................................................................................... 64 Part B – Justification for sharing personal information....................................................... 67

Key working: improving outcomes for all

1 Purpose of this paper This paper presents a summary of the key evidence and consistent elements of a key working approach. It presents an analysis of the implications of key working that cuts across health, social care and education. The paper is intended to inform government thinking on the Special Educational Needs and Disability (SEND) reforms, the palliative care pilots and the Children and Young People’s health outcomes work. It also aims to inform and promote discussion in a wider audience, including managers, practitioners, parent carers and others for whom key working approaches are of interest. Whilst there exists a significant amount of evidence on the value of a key working approach, including in best practice NICE guidance1, evidence from Early Support and other areas of work, barriers to take up remain. Furthermore, a lack of a coordinated approach means that at present, not all children and young people with serious health conditions, disabilities and/or other additional needs can benefit from key working. The new statutory reforms together with the Children & Young People’s Health Outcomes framework presents a real opportunity to create a more coordinated and active approach to the adoption of key working across health, education and social care provision. It presents an opportunity to promote consistency of definitions of key working and the terminology that surrounds it. This evidence paper seeks to set out a shared understanding of a key working approach and its functions and details the potential benefits of adopting a key working approach more widely, as well as the barriers to its implementation. In addition, there are a number of reasons why, in the current economic climate, key working can maximise efficient use of time and minimise duplication. Key working functions are: • Already provided by a range of practitioners working in the team that support the child, young person and family, with a great deal of duplication of effort • Rarely needed in their entirety, at least not to an intense level over long periods, particularly when practitioners are working to families’ strengths and capitalising on their resilience • Cost effective because the impact of this kind of support on outcomes, over the long term, will lead to cost savings 1

NICE (2005) Improving outcomes in children and young people with cancer, http://guidance.nice.org.uk/CSGCYP

Key working: improving outcomes for all

• Valued by families because where services and the practitioners who work within them are configured appropriately, with the right infrastructure and support mechanisms, key working provides a first class, family focused approach to support. This paper provides evidence to support this and suggests a model of key working that explains how these functions can be delivered. Note that this does not provide comprehensive modelling of the cost-benefits of key working because this kind of study has not, as yet, been undertaken in the UK. However, we reference a number of projects that have demonstrated economic value.

2 What is key working? “Having a key person in place has been invaluable for all of us and without them our son’s needs would be much greater along with our own. We are growing in confidence and have been attending new groups that understand and support our needs……….we have renewed strength to fight for what is needed for all families.” Parent carer

2.1 Defining key working Key working support provides a navigator, an enabler, a coordinator. The overall aim of key working is to ensure the provision of holistic care and support to meet the individual requirements and aspirations of the child, young person and their family. The care and support should be familycentred, not only child-centred. The individual offering key working support should strive for an open and supportive relationship with the child/young person and their family, and this should be developed through regular and proactive contact. The Government’s (2011) Green paper on special education needs (SEN) and disability states “Parents with disabled children are likely to face higher levels of stress, and they value the practical and emotional support of a key worker…In order to extend the use of key workers for families with disabled children, we need more people to be trained as key workers from a wider field of professionals.” (pp 43-44, 2.12) The variety of types of service collaboration has led to ‘key workers’ being employed on different bases. Some operate as ’designated’– in this case their job is confined to key working and their caseload is entirely made up of families to whom they provide key working support. They may support a large number of families. In contrast, a non-designated approach is where those offering key working support do so for only a very few families to whom they are offering other kinds of support. For example, a Portage worker may offer key working support to a family to whom they are also offering Portage support; a 5

Key working: improving outcomes for all

physiotherapist may offer key working support to a young person with cerebral palsy with whom they are working to relax their muscles; a social worker may offer key working support to a family with whom they are working to provide appropriate and acceptable short breaks. There is little doubt that families benefit from and value both kinds of this support, designated and non-designated. However, the term “key worker” creates confusion, has a wide range of definitions, a variety of job descriptions and is often misunderstood. Cavet (2007)2 shows that in the past there has been no specific formula for key working, and that services differ considerably in the way they operate. Moreover, there have been regional and local variations in the terms by which key working support has been known (eg Townsley et al, 20043; Greco et al, 20054). Terms such as ‘key worker’, ’link worker’, ’family support worker’, ’care coordinator’ or ‘service navigator’ have been employed for those who offer key working support. It could be argued that much of the confusion and lack of clarity is created by referring to key working as if it is defined by a key worker role. It may be more useful to define key working by a set of functions rather than defining it as a key worker role. With this approach, the model can then be applied to meet the needs of specific groups – for example, CLIC Sargent recommends that for children and young people with cancer on active treatment, key working support will be provided by a specialist nurse experienced in oncology attached to a specialist cancer hospital (known as a Principal Treatment Centre). This might be a different practitioner, such as a specialist social worker, at a different point in the pathway. If we define key working as a set of functions, we can enable those wishing to establish key working as their pivotal methodology to support children and young people with additional needs and/or their families to set up an approach to support. This set of functions can be fulfilled by a wide range of practitioners, from all agencies or the voluntary sector, or by parent carers or young people themselves. This means it becomes a way of working rather than an additional5 service. This is not to suggest that key working services are not valuable and necessary, it is simply suggesting that key working does not have to rely on a specific role – it should be everyone’s

Cavet, J. (2007) Best practice in key working: what do research and policy have to say? Working in Partnership through Early Support distance learning text. Available from www.ncb.org.uk/earlysupport 3 Townsley, R., Abbott, D. and Watson, D. (2004) Making a difference? Exploring the impact of multiagency working on disabled children with complex health care needs, their families and the professionals who support them, Bristol: The Policy Press. 4 Greco, V., Sloper, P., Webb, R. and Beecham, J. (2005) An Exploration of Different Models of Multiagency Partnership in Key Worker Services for Disabled Children: Effectiveness and Costs, Nottingham: Government Publication. 5

Note that this is not suggesting that existing designated or non-designated key worker services should be disbanded or that they are not useful.

Key working: improving outcomes for all

responsibility to ensure children, young people and families have key working support from a named individual, whoever that individual might be.

2.2 Key working functions Key working is one of the most important elements of support for children, young people and families – it helps them to live ‘ordinary lives’ (see Section 3) and enables the growth of strong and resilient families. The functions of key working need to be clearly established. The functions are:• Emotional and practical support o

Providing emotional and practical support as required, as part of a trusting relationship

Enabling and empowering the child, young person and their family to make decisions and use their personalised budgets in a way that is most effective for them

• Coordination o

Being a single point of regular and consistent contact for the child, young person and family

Facilitating multiagency meetings

Coordinating services and practitioners around the child, young person and family

• Planning and assessment o

Supporting a single planning and joint assessment process

Identifying the strengths and needs of all family members

• Information and specialist support o

Providing information and signposting where necessary

Advocating on the child’s, young person’s and/or family’s behalf where appropriate

Facilitating clinical care seamlessly integrated with specialist and universal services, where appropriate.

The functions are divided into four interlocking categories, as shown in Diagram 1 below (adapted from CLIC Sargent 2008 and CLIC Sargent 20116)

CLIC Sargent (2011) Specialist Nurse Key worker handbook CLIC Sargent, London CLIC Sargent, (2008) More Than My Illness: Delivering Quality Care for Children with Cancer. CLIC Sargent, London

Key working: improving outcomes for all

Diagram 1: Key working interlocking functions

The evidence of the effectiveness of these functions is explored in detail in Section 6. All of these functions should be underpinned a principled way of working, such as the Early Support7 approach and principles (see Section 6), possibly using Early Support resources8, where appropriate. For more information about Early Support, see www.ncb.org.uk/earlysupport.

Early Support is a way of working, underpinned by 10 principles that aim to improve the delivery of services for disabled children, young people and their families. It enables services to coordinate their activity better and provide families with a single point of contact and continuity through key working. It focuses on ensuring that service delivery is child, young person and family centred and that services and practitioners work in partnership with children, young people and their families. Early Support is a core delivery partner for implementing the strategy detailed in Support and aspiration: A new approach to special educational needs and disability, the Governmentâ&#x20AC;&#x2122;s 2011 Green Paper. 8 Early Support has been tasked by the Government to develop key working training, which is based on the functions outlined in this paper and which will be available to all practitioners, from all agencies and the voluntary sector and to parents and young people from September 2012.

Key working: improving outcomes for all

3 Who should perform these key working functions? Key working support may come from health, social care, education or the community, voluntary, independent or private sector. It should be selected according to the specific needs of the child (DfES & DH, 20039). In addition, some parent carers may choose to provide their own key working support. Research (eg. Greco et al 200510) suggests that there is no particular profession whose members are best suited to provide key working and that systemic factors (such as effects of training, supervision and time allocation) have more impact on the effectiveness of key working than backgrounds. However, It does appear that currently there are some practitioner roles that are less well suited to key working. For example, Mukherjee et al (2000)11 suggest that jobs which constrain a person’s ability to offer key working support include those where home visiting is likely to be difficult, where attending meetings might be constrained by things such as timetabling and those in which practitioners’ statutory responsibilities take precedence over their role as an advocate for the family.

4 What are the benefits of a key working approach? 4.1 Strategic opportunities • Sloper et al (2006)12 suggest that those offering key working support are in a position to document unmet needs, encourage participation in service development and facilitate smooth interagency working. Those providing key working support can gather information that can inform a number of different local planning and improvement strategies. They could feed in to the Joint Strategic Needs Assessment (JSNA), not just by identifying the scope for key working support, but also by identifying gaps in service provision identified as part of their coordination function for families. For more information about the JSNA and its role in facilitating key working, see Appendix C,

Department for Education and Skills and Department of Health (2003) Together from the Start – Practical guidance for professionals working with disabled children (birth to third birthday) and their families, Nottingham: Government Publication. 10 Greco, V., Sloper, P., Webb, R. and Beecham, J. (2005) An Exploration of Different Models of Multiagency Partnership in Key Worker Services for Disabled Children: Effectiveness and Costs, Nottingham: Government Publication. 11 Mukherjee, S., Beresford, B. and Sloper, P. (1999) Unlocking Key Working, Bristol: The Policy Press. 12 Sloper, P., Greco, V., Beecham, J., Webb, R. (2006) Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families? Child: Care, Health & Development, 32(2), 147-157

Key working: improving outcomes for all

• With key working support, families can be enabled to have much more of a say in the decisions that affect them. This is not just a good idea, it is a right - Article 12 of the United Nations Convention on the rights of the child states that Children have the right to say what they think should happen when adults are making decisions that affect them and to have their opinions taken into account… this applies to everyone, whatever their race, religion, abilities, whatever they think or say or whatever type of family they come from.' • It is critical to service improvement that children, young people and their families remain at the heart of arrangements and that their views are listened to and developed. It is essential to explore ways of working that will enable services to have a framework in place to ensure participation is built in and embedded in organisational values and service delivery. Specifically, this can be achieved by those delivering key working support: o

Listening to, hearing, respecting and communicating the views of children, young people and families

Working with children, young people and families as equal partners, involving them in the development of services

Ensuring that services are moulded around children, young people and families rather than expecting them to fit in with service priorities.

Intervening early, identifying and solving problems from an early age or when concerns are first raised or noticed rather than having to rely on costly crisis interventions

Strengthening support for schools and settings so that they can provide high quality education and learning for all children and young people, by, for example;  ensuring all agencies work together to help schools and settings meet children’s needs.  ensuring that schools and settings fulfil their responsibilities and offering support to help them do so  advocating on behalf of children and young people when they don’t

• The SEN system involves so much coordination and liaison that families’ experiences are often very negative and they will, not surprisingly, take their frustrations out on the system and on those who operate it. Penfold et al (2009) reported significant dissatisfaction with the SEN system. Parent carers do not have confidence in the system and will often go to appeal, which 10

Key working: improving outcomes for all

is a costly process not just financially but also emotionally. Parent carers find that the SEN system requires “a high level of active involvement [with parent carers often taking on] responsibility for liaising between and coordinating SEN professional stakeholders. Even where relationships with local authorities were good, parents and carers found the process exhausting and described feeling daunted and at a disadvantage”. The provision of key working support, particularly the coordination and emotional support it entails, can make a significant difference to families’ experience and hence can avoid costly appeal and dissatisfied families. Ultimately it could save a great deal of money as well as a great deal of heartache. Of course, it would be an important element of the information provided by those providing key working support to signpost the family to Parent Partnership13 and Mediation14 services. • The NHS Outcomes Framework aims to provide a national level overview of how well the NHS is performing, wherever possible in an international context. It acts as a catalyst for driving quality improvement and outcome measurement throughout the NHS by encouraging a change in culture and behaviour, including a stronger focus on tackling health inequalities. Key working could contribute to the achievement of the outcomes in some of the domains. Appendix A maps key working functions on to two of these domains, outlining the key working functions, providing examples of what this would look like in practice, showing the potential to use this as a way to support the achievement of outcomes in the framework. Whilst key working has the potential to improve outcomes for patients of all ages, we believe there are particular benefits for children and young people, not least because of the wide range of services involved in providing their care and support, and so key working should be explicitly promoted as part of the Children & Young People’s Health Outcomes Framework. • Finally, there is an opportunity to contribute to workforce development routes. For example, workforce functions are being transferred from the Strategic Health Authorities to local healthcare providers, enabling local workforce planning and development coordinated through skills networks. There is a new national body, Health Education England (HEE), to provide national oversight and leadership for health workforce planning and education and training. This means that there is an opportunity to ensure that these new arrangements and those leading them understand the key working role and its benefits and can position the workforce to develop

Parent Partnership services (see www.parentpartnership.org.uk) are funded by the Department for Education to offer confidential advice, information and support to parents and carers of children and young people with special educational needs. They are supported and promoted by the National Parent Partnership Network (see www.councilfordisabledchildren.org.uk/what-we-do/networks-campaigning/national-parentpartnership-network) 14 Mediation services help those in dispute to negotiate solutions that are acceptable to all parties – there are a number of such services across England – for example see www.kids.org.uk/information/100885/100924/mediation/

Key working: improving outcomes for all

these skills. Likewise, the Department for Education is continuing to invest in graduate early years and teacher training programmes, The revision of these offers another opportunity to include key working as part of the skill set developed across early years and education.

4.2 Opportunities for families • Key working support almost inevitably means that practitioners will work together holistically: o

Not just focussing on one concern/problem in isolation;

Thinking about all the children in the family;

Thinking about the needs of parent carers and the wider family.

Giving children and young people better information about the support that is available

Involving children, young people and families in how to improve information

Making sure that information covers the full range of needs

• Key working practitioners can encourage others to respect the ability of families to make the right decisions for their children and strengthening support for them to meet their children’s needs - for example by asking families for their solutions, enabling them to find them and providing practical help to meet families’ needs, ensuring they can take control of decisions and meetings that are about them • Key working support can also enable young people to access a range of positive activities and opportunities, especially those who are vulnerable or who have particular needs. The relationship key working practitioners can develop with young people and their in-depth knowledge of the young person, their aspirations and those of their family can play a very significant role in ensuring the young person achieves their full potential. • Key working support can ensure that everyone working with children and families taking individual, as well as collective, responsibility to find solutions, not just referring on to others to solve problems but by carrying on being involved for as long as needed, offering the right support at the right time and for the right length of time. • Those delivering key working support can focus on achieving the outcomes wanted by children and young people with additional needs and their families. Rabiee et al (2005)15 found that the disabled children they interviewed wanted to be healthy, have friends and interests, be part of 15

Rabiee, P., Sloper, P. and Beresford, B. (2005) Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication, Health and Social Care in the Community 13, 5, 478–487

Key working: improving outcomes for all

the local community, to acquire social and self-care skills and future independence, to feel confident and respected by others and to experience success and achievement. This is also what their parents wanted for them. And this is similar to the wishes of all children. However, there was a hierarchy of desired outcomes for children with additional needs in the sense that the achievement of some outcomes was essential before it was possible to work towards other desired outcomes. For example, for children with complex health needs, being comfortable and not in pain is necessary before they can consider having friends and playing a part in the local community. This interrelationship between desired outcomes highlights the importance of multiagency partnerships, including key working, if children and young people with additional needs are to achieve what they want (Cavet, 2007 op cit).

4.3 Opportunities for practitioners Practitioners who have key working as part of their role will more often find themselves working together with others, with increased trust and confidence, to own and solve problems jointly, working as part of the team around the child and family, taking the lead when appropriate and valuing other practitioners, not criticising or blaming them. This will also involve using common language and having streamlined assessment arrangements. It is no surprise that practitioners who have key working as part of their role express an increase in job satisfaction. Behind key working lies a range of â&#x20AC;&#x153;toolsâ&#x20AC;? which have either been developed nationally or locally. What is important is that they are used flexibly, creatively and are adapted to support each individual needs and situation. Currently national work16 is being undertaken, which will enhance and enrich the key working skills of practitioners as well as offering the same opportunities to parent carers and to young people. The opportunities are there for key working, we know it works, now we need to explore the systems that could enable it to succeed.

4.4 Facilitating elements of statutory reform The SEND Green Paper Pathfinder interim evaluation report17 states that â&#x20AC;&#x153;Areas that had made good progress developing an assessment and planning pathway also tended to be at an advanced stage of considering how to coordinate and deliver their new approach. This had included consideration of the skills and capacity that would be required to deliver effective key working,

Early Support has been tasked to develop and deliver national key working training Craston M, Thom G, Johnson R and Henderson L (SQW) (2012) Evaluation of the SEND Pathfinder Programme Interim Evaluation Report 17

Key working: improving outcomes for all

which was seen as important in developing plans”. The report also suggests that Pathfinders tend to see key working as a way to address some of the weaknesses they are encountering in working practices and associated systems that appear to be barriers to the success of statutory reform. In addition, key working training is seen by many Pathfinders as a way to enable change management in the system, particularly in terms of the need for family centred and integrated approaches to practice. It appears from the evaluation report that Pathfinders are looking for clarity around the key working role and some consistency in approach. This paper, together with the Early Support key working training, could offer a solution to this. Moreover, this is not just a possible solution for Pathfinders – all areas will need to implement statutory reform and using key working as a pivotal development may help them to manage the reforms and implement them more effectively and more easily.

5 Key working functions in practice As explored above, key working is better defined by a set of functions rather than defining it as a key worker role. The key working functions that best reflect the support key working needs to provide for disabled and sick children, young people and their families are:• Being a single point of regular and consistent contact for the child, young person and family • Providing information and signposting where necessary • Identifying the strengths and needs of all family members – this would include raising aspirations for good life outcomes, especially for young people who require a complex package of support This would include sharing what helps young people achieve these outcomes, what the local area can offer and how to influence commissioners if there is a gap in provision. • Advocating on the child’s, young person’s and/or family’s behalf where appropriate – not offering formal advocacy support (that would be provided by others such as Parent Partnership or formal advocacy services) – this is more about empowering and supporting parent carers and young people, and helping to represent their views, wishes and feelings when needed • Providing emotional and practical support as required, as part of a trusting relationship • Coordinating services and practitioners around the child, young person and family • Facilitating multiagency meetings • Supporting a single planning and joint assessment process • Enabling and empowering the child, young person and their family to make decisions and use their personal budgets in a way that is most effective for them • Facilitating clinical care seamlessly integrated with specialist and universal services, where appropriate. 14

Key working: improving outcomes for all

A model of key working is presented on the next page. This explains how the key working functions could be applied in practice. In this model, there are three levels of intensity for the key working functions.

5.1 Model of key working

Key working: improving outcomes for all

5.2 Intensive level of support What does this mean? The innermost â&#x20AC;&#x2DC;cupâ&#x20AC;&#x2122; holds those children, young people and families who require an intensive level of support. It is these families who would be most likely to benefit from a key working practitioner who could dedicate a significant amount of their time, at least in the early days or at times of crisis, to offer this intense level of support (perhaps using a designated key working approach). The practitioner must have the time to deliver all key working functions to an intense level. The family may need, in the early stages, frequent and regular proactive contact and responsiveness. Children, young people and their families who require this level of support are likely to receive services from a number of agencies and require complex packages of support. As well as receiving universal services through the local offer they are likely to need specialised services. It is probable that the key working support will be provided by one of the agencies providing specialist support where either the most significant level of intervention is required and /or the parent is confident that their own support needs will be met, This could be a range of staff from health, social care, education or the voluntary sector. The complex support package will need to be supported by a single planning and joint assessment process, leading to a single Education, Health and Care Plan. It is likely that the key working practitioner will be the coordinator of the complex support package and will lead the coordination and implementation of the Education, Health and Care Plan. The support would need to be coordinated and planned in the context of a multiagency meeting. This would enable all of those working most closely with the family to discuss with the family their strengths, their support requirements and their aspirations. The Education, Health and Care Plan could come out of that meeting and it would need to be reviewed on a regular basis, in line with current legislation. The key working practitioner would coordinate this and ensure regular reviews. The reviews would not always require a multiagency meeting, but would require the key working practitioner to work with the family and their most relevant practitioners in a way that best suited the family and their complex package of support. Where statutory plans are in place from any agency, the key working practitioner will want to ensure they are upheld. Once the Education, Health and Care Plan was drawn up, its funding would need to be determined. It is possible that some families will choose to have a personal budget to enable them to commission service delivery to meet the planâ&#x20AC;&#x2122;s requirements. They could use their personal 16

Key working: improving outcomes for all

budget with or without key working support, but it is likely that personal budgets would be more effectively and more frequently used if a family has key working support. Indeed, the key working practitioner may be able to support the family in identifying particular services that might meet their needs and facilitate their involvement. Families in this ‘cup’ may not need this intense level of support continually. This does not mean the support needs become any less complex (though they might), but it does mean that the key working support they require will not necessarily involve the provision of all of the functions, all of the time, over a long period. This is depicted by the arrow, showing that families held in this ‘intense cup’ may have lower intensity input from the key working practitioner once their coordinated support package is in place. They feel secure and empowered and they know they have that key point of contact to go to when they need it. They also know they will have regular reviews, facilitated by the key working practitioner. Children, young people and families can move from the innermost ‘cup’ into the outside ‘cups’, with less intensive support requirements. Few of those children, young people and families with complex support packages will require an intensive level of support throughout their journey – they could move to a high level or a moderate level of support. This means that the practitioner providing key working support will not need to spend the time working with and on behalf of the family that they may have to spend in the early stages. It is also the case that the level of support may need to go back up to the intense level at times – perhaps at transition points or periods of significant change when there are family crises or health issues. That is why the arrow is shown as moving in both directions – and why families in this innermost ‘cup’ may need to stay there, with key working support on offer, throughout their journey. However, this does not mean that the key working support they need will always be at an intensive level. The two case studies that follow demonstrate how this might work.

Case studies18: How it might work at an intensive level A: The potential of key working support Daniel was six years old and he had the most beautiful smile his parents had ever seen. He was happy most of the time and made his parents laugh at his expressions and his gestures. He was much loved by all the family. Daniel had a diagnosis of SMARD1 Spinal Muscular Atrophy with

Note that all of the names in all of the case studies in this paper have been changed and some of the family details have been adjusted

Key working: improving outcomes for all

Respiratory Distress19. His family struggled because there was so little communication and information from the practitioners involved with Daniel’s care and support. The whole family had to learn for themselves or squeeze answers and detail from wherever they could. People who tried to help often stepped in and out. Only two practitioners joined them consistently on their journey - the Intensive Care Ventilation Consultant and the Psychologist, who have been a great support to Daniel’s parents. Many times the family were not been listened to when, in fact, they were the experts on Daniel and his family’s requirements and wishes. The family had to come to terms with the clinical reality that Daniel was seen as an unknown quantity. Together, they had to carve a new path because nobody they had contact with knew what was happening and why. They found themselves having to work with service provision and delivery that was not fit for purpose. This was confirmed by an external review. When Daniel’s sister Faye was born 10 months after Daniel’s diagnosis, the family knew they had to ensure they got the right support for their family and for Daniel’s care. They wanted to protect Faye from the impact of having strangers around in the house all the time, the stress they were experiencing including the financial struggle and everything that went along with caring for a child with health requirements that involved a complex support package. Seeing how difficult things were for Daniel and his family, one of the parent carer’s colleagues offered to provide key working support over a short period of time to get a multiagency meeting together, coordinate services and develop and implement a holistic single plan for the family. The key working support enabled coordination of services around a multiagency meeting. For the first time, 25 significant practitioners met together with the family to discuss Daniel’s and his family’s requirements, priorities and wishes. Decisions were made in an instant – decisions that the family had been fighting to get agreed for months. The family discovered things they had never been told and were introduced to options that they didn’t know existed. A single, integrated, jointly agreed plan was made and great relief was felt all round, particularly from Daniel’s parents. Out of the meeting, a self-managed care package was agreed and the funding was arranged. . The palliative care team became involved with Daniel at the same time. Sadly, he caught a chest infection and died a few weeks after the meeting, something that the family never expected to 19

Spinal muscular atrophy with respiratory distress type 1 (SMARD1) is a rare inherited disorder characterised by muscle weakness and respiratory failure. At birth, infants with SMARD1 are often noted to have a weak cry, airway obstruction or weakness, feeding difficulties, and abnormally contracted or short muscles. Infants with SMARD1 typically develop progressive, severe respiratory distress within the first six weeks to six months of life, resulting in the need for irreversible mechanical ventilation (adapated from th www.genedx.com; accessed on 20 July 2012).

Key working: improving outcomes for all

happen so quickly. The time in between the meeting and Daniel’s death had given the family a glimpse of what could have been if all the services and practitioners had talked and listened to each other from the start. Moreover, it had given the family a glimpse of the difference that key working could make. B: Delivering effective key working support Bethan is a lovely girl with a warm smile and a passion for tactile toys. She has profound learning disabilities and communicates non-verbally and through a limited number of signs. Bethan has recently developed self-injurious behaviour, which significantly affects her quality of life and puts her in danger. Her mum, Laura, has managed Bethan’s behaviour very well in the past but has now asked for significant help and support from a range of practitioners... A large and complex multiagency team supported Bethan and her family. This team comprised family members, school staff, school nurses, community nursing team, Community Team for People with Learning Disabilities (CTPLD), short breaks social worker, Consultant Community Paediatrician (CCP), Hospital consultants, Teacher of the Deaf. At its largest, there was representation at a single meeting of 25 different practitioners. Discussion with Laura indicated that she preferred to retain management of the day-to-day correspondence – she had always done this and wanted to continue. However, she was happy to allow the current situation to be coordinated, with key working support from Tamsin, the Nurse from the Community Team for People with Learning Disabilities. Tamsin took responsibility for integrating elements of risk assessments and behaviour management plans as well as engaging with a medical engineer to develop a risk management device. She drew on views from her own and broader services and relayed appropriate information to the family without overwhelming with jargon-based detail. This remains an on-going situation but information is now channelled and shared appropriately, avoiding huge multi-practitioner meetings. These large, complicated and lengthy meetings, were not positive in terms of encouraging discussion and they seemed to inhibit genuine interagency engagement and innovation. An effective, unified risk management model is now in place. Bethan is now much calmer and seems much happier at school and at home. Bethan’s family are now able to help her calm down and to be included in all the family’s activities with less stress on all of them. Crucial to this development was the realisation that too much information from too many sources, using too much jargon and with differing service priorities was not effective. The approach to support for the family needed to be streamlined and focussed directly on addressing Bethan’s requirements because immediacy of support was of major importance. The Community Team for 19

Key working: improving outcomes for all

People with Learning Disabilities were the service who offered key working support, but it could have been drawn from the social work team or Bethan’s school.

5.3 High level of support What does this mean? The next ‘cup’ holds those children, young people and families who require a high level of support. For these families, key working support could be provided by a practitioner in the team around the family, who has time written into their job role to enable them to deliver all of the key working functions to a high level (perhaps using a designated key working approach). The family may need, in the early stages, frequent and regular proactive contact and responsiveness but this would quickly reduce, such that after a very short period of time the family would require fewer proactive contacts and less time from the key working practitioner. Children, young people and families who require this level of support may have quite complex support packages, provided by a number of practitioners. However, the support package will probably be less complex than that needed by families who need intensive levels of support and the family themselves will probably have more support from family, friends and/or the community meaning that they will make fewer and less intensive use of the key working practitioner’s time. It is likely that the support package will not be met by the Local Offer and some specialist input may be needed. The support package will probably need to be supported by a single planning and joint assessment process. It is likely that the key working practitioner will be the coordinator of the support package and will lead the coordination and implementation of the single plan. Similar to the more intense level outlined above, the support would need to be coordinated and planned in the context of a multiagency meeting. This would enable all of those working most closely with the family to discuss with the family their strengths, their support requirements and their aspirations. An Education, Health and Care Plan could come out of that meeting and it would need to be reviewed on a regular but not necessarily frequent basis. The key working practitioner would coordinate this and ensure regular reviews. The reviews would not always require a multiagency meeting, but would require the key working practitioner to work with the family in a way that best suited the family and their complex package of support. Once the plan was drawn up, its funding would need to be determined. It is possible that some families will choose to have a personal budget to enable them to commission service delivery to meet at least some of the plan’s requirements. They could use their personal budget with or without key working support, but it is likely that personal budgets would be more effectively and more frequently used if a family has key working support. 20

Key working: improving outcomes for all

Families in this middle ‘cup’ may not need this high level of support continually and all of the key working functions may not be needed, or the family may have a reduced requirement for key working support time. This is depicted by the arrow, showing that families held in this ‘high cup’ may have lower intensity input from the key working practitioner once their coordinated support package is in place. They feel secure and empowered and they know they have that key point of contact to go to when they need it. Few of those children, young people and families in this ‘cup’ will need to be held there with a high level of support throughout their journey – they could move to a moderate level of support. This means that the practitioner providing key working support will not need to spend the time with and working on behalf of the family that they may have to spend in the early stages. The case studies that follows demonstrates how this might work.

Case studies: How this might work at a high level of support A: Transition Greta is 18 years old and she is very keen to be independent. She loves animals and has aspirations to work with them in some capacity. Greta was identified by a voluntary agency for support around independent living and further education, to help her to achieve her aspirations to work with animals. Greta had issues with family relationships breaking down and she was becoming increasingly isolated. She has cerebral palsy and some issues with learning. When she was referred for key working support to an existing key working service she was residing with her stepfather, but this placement broke down. Greta moved regularly between short break and supported lodgings placements until a place was found at a supported living establishment for people with learning disabilities. Eventually she felt confident in managing her own property and moved into a private rental flat. A great deal of work was undertaken during the provision of key working support from the voluntary agency: • Long initial meeting and subsequent shorter meetings to explore and discuss all issues identified by Greta as important to her • Ongoing relationship development between Greta and her key working practitioner to offer emotional as well as practical support and to help Greta’s confidence and self-esteem to improve. • Referral to adult care management team and follow up to ensure that the things important for Greta’s support were met 21

Key working: improving outcomes for all

• Referral to Community Matron for Transition regarding health requirements and follow up to ensure things important for her health were addressed • Referral to Community Team for Learning Disabilities regarding some relationship issues and follow up to ensure issues important to Greta were addressed. • Advocacy for Greta at meetings and appointments, wherever she requested this • Introduction to a local college that offered the qualification she was looking for together with additional support to help her achieve it Greta now lives independently and manages her own health care and appointments. She has the confidence to advocate for herself and knows who to go to when she does need extra advice. She is in college, with additional support from a Learning Support Assistant, to study for a level 2 National Vocational Qualification (NVQ) in animal care. It was important for Greta to have support from practitioners whose goal was to support her to become confident and independent – she had many strengths that could be utilised. Greta was given a wide range of information that would be of use so that she could be supported to make informed decisions and achieve her goals. B: Palliative care When Corine was born in February 2009 all appeared well. She was a long-awaited daughter for Tricia and Lamar and they couldn’t have been happier. She was a delightful child, with an infectious smile and a gentle temperament. However, when she was just two years old she appeared unwell and not at all herself and, after a long series of tests and interventions, Corine was diagnosed with Medulloblastoma (a kind of brain tumour). Tricia and Lamar chose to have a series of treatments, which seemed to help Corine, but in 2011, when Corine was 3 years old, she relapsed. Tricia and Lamar, after long and distressing discussions with the practitioners working with them, chose the option of no further treatment and decided to take her home. With this decision made, a palliative care package was required. To put this into motion, Tricia and Lamar asked their CLIC Sargent Nurse (key working for the child and family) and Consultant Oncologist to meet with their GP, Children’s Community Nurse and Adult District Nurse for the area to inform them of diagnosis, treatment already provided and the family’s decision to have no further active treatment. There was of course anxiety for the GP and the district nurses as they were not used to dealing with a child who was having palliative care, but they were reassured that support would be available from the CLIC Sargent service and that the decision made by Tricia and Lamar was fully informed.

Key working: improving outcomes for all

Immediately on discharge from the hospital, the whole family had support from the CLIC Sargent Nurse on at least a weekly basis, sometimes with joint visits from the local team to enable a relationship to be established. As Corine’s condition deteriorated, further intervention was required. Corine had huge difficulties swallowing medication and Tricia and Lamar did not want her to have a naso-gastric tube. Therefore, the decision was made to start an alternative method of administering medication (a syringe driver). Therefore a joint visit was carried out with the district nurse and children’s community nurse to facilitate this, organised by the family’s Clic Sargent key working nurse. Over the next few weeks the CLIC Sargent Nurse visited Corine, Tricia and Lamar with the local team. They also set up teleconferencing in the home to allow maximum support to the family and the local practitioners, as the family identified what they wanted. On the occasions that the local team visited they would always talk together after to ensure the support and care options discussed with the family were actioned, The CLIC Sargent nurse felt that because of the relationship she had built up with the whole family and the local team Corine could remain at home. This was what Tricia and Lamar wanted, at least in part so that they could be with their three sons, Corine’s older siblings, as well. Corine died within three months of her relapse and afterwards the whole family were very appreciative of the support they had had. Following Corine’s death, the CLIC Sargent nurse continued to provide key working support support and liaising with the local team to ensure the family had support as long as they needed it. Despite the desperately sad situation, the whole family were impressed with the support that had been provided by this joint team, and felt that Corine had been given the best care possible.

5.4 Moderate level of support What does this mean? The outermost ‘cup’ holds those children, young people and families who require a moderate level of support. For these families, key working support could be provided by a practitioner in the team around the family. The family are unlikely to need frequent and regular proactive contact and responsiveness but they may require help with setting up a coordinated package of support or with organising the support they need. Children, young people and families who require this level of support are unlikely to have complex support packages. The support package they need might be met by the Local Offer. In some instances, a single Education, Health and Care plan will still be required. However, if an Education, 23

Key working: improving outcomes for all

Health and Care plan is not required, a child and family centred coordinated plan will still be needed. In these cases, the Common Assessment Framework might be used. If key working support is needed, it is likely to be used to enable the family to navigate their way through the elements of the Local Offer that they need to access and to put plans in place to ensure it happens. The key working support is likely to be short-term and fairly light touch. It is unlikely that all of the key working functions will need to be used. Provided families feel secure and empowered and they know they have that key point of contact to go to when they need it, it is unlikely that families held in this ‘cup’ will take up very much of the key working practitioner’s time. Some of the children, young people and families in this ‘cup’ will be able to exit into universal services, though they may still need to know that they can access a single point of contact if they need it. The case studies that follow demonstrate how the above might work.

Case studies: How this might work at a moderate level of support A: Family support Jake was generally a happy child, despite difficulties at home. He was lively and liked to play outside whenever he could. Jake had some delay in his developmental progress and appeared to find aspects of learning difficult. This was at least partly because he found it difficult to settle and be calm and he had significant difficulties concentrating. This gave his family and settings he attended some concerns about this behaviour. In addition, his family life was very stressful. Jake’s mother, Mandy, had had a disadvantaged and traumatic upbringing and family circumstances were difficult. Jake was supported prior to school admission through Early Support and the early years in school were well supported and he seemed to be progressing quite well. The key working practitioner did a great deal of work to support with practical issues but, most significantly, served as a steadying and positive support for Jake’s mother Mandy. It appeared that Mandy’s confidence grew and her ability to cope with Jake’s behaviour improved. The key working practitioner stopped working with Mandy and Jake once Jake started school because it appeared that the school could offer the support he needed and Mandy seemed to be coping quite well. Once the key working support ended things went well for a while. However, the addition of two younger siblings (twins) and an increasingly unstable home situation gave rise to concern. With agreement from Mandy, the Parent Support Advisor and the Community Team for People with Learning Disabilities (CTPLD) nurse who had started working with the family adopted a joint key 24

Key working: improving outcomes for all

working approach. This proved effective for a period. However, due to restructuring of agency work practices and a personnel change this arrangement ended and the family’s current provision does not involve key working. An urgent need to review provision for Mandy and Jake in particular has been recognised, with a focus on maintaining a positive, modelling and challenging relationship with the Mandy. Ideally this needs to be a single person whose involvement will not relate to change of class or year group and to ensure coordination of support for the whole family. The absence of effective key working and joint planning and a fragmentation of support has led to significant breakdown in family provision and lack of cohesion of multi-agency involvement. New structures need to be created, based on key working principles, initially to remediate the current situation and then secure a sustained positive momentum for Jake. He is struggling again and Mandy is struggling to cope – Mandy has identified the need for a single point of contact and support but is worried that she might not get this. B: Transition to adult services Ajay was a very sociable young person who was keen to make friends and have some relationships away from his family. His main aims in life were to have a relationship with someone who was not a family member and to have the opportunity to choose some things for himself rather than relying on his parents to make all his decisions for him. Ajay was about to turn 18 years of age and he was referred to the transition support team to coordinate his transition to adult services. He had a large and complex care package (including short breaks) in children’s services which needed to continue. He has intractable epilepsy, sometimes experiencing seizure activity up to 30 times in a 24 hour period and also a significant learning disability. His parents were very proactive with his care but were also concerned that his package would stop and that they would not be able to cope with his high care needs 24 hours a day, seven days a week. Ajay was frightened that if he had to rely only on his parents then his aims of making friends and having some control, no matter how small, over his life would not be fulfilled. Ajay had key working support, which made a huge difference to ensuring his aims were met and his parents’ concerns were addressed. Ajay’s key working practitioner understood, because of her continued relationship with him and his family over a two-year period, the things that were important to Ajay and his family and the things that were important for their support. Through key working support the following was achieved: • A referral to a youth group to replace the children’s group Ajay used to attend. 25

Key working: improving outcomes for all

• Support provided for Ajay and his parents to look at all available adult provision and make a decision, involving Ajay, as to what would best meet his requirements and wishes. • Tea visits arranged at an adult short break centre prior to his 18th birthday. • Person-centred planning used and a personal budget obtained. • The family’s requests were taken to panel and approved. This included direct payments, short breaks and additional hours in case one of Ajay’s parents became ill. • One to one funding secured for his short break placement at 300 hours for the first 6 months. • Support to enable him to communicate his wishes and to help his parents to better understand and support his decision making about his own care • Chairing of a review meeting to discuss whether the care package that Ajay had been accessing after 6 months of being in adults services was appropriate and sufficient. • General emotional support and advocacy for Ajay’s mother, who was finding the transition very stressful and struggling to come to terms with Ajay’s wishes. • Explanation and clarification around the changes that would taking place through his transition and support to access all support available Ajay’s mother, in particular, very much appreciated the support that she received. She said that she had dreaded his 18th birthday for years but would now support other parents as she felt that due to the key working support the family had received it was not as scary as she had believed that it would be. Ajay’s parents said that they was grateful to have someone they could call who would chase everything up for the family and push things along. They also appreciated having someone that they could get emotional with and not feel judged. Ajay was very pleased to have the opportunity to make friends and socialise outside of his family and was relieved to have the support he needed to help him communicate the things he wanted for his future.

Key working: improving outcomes for all

5.5 Section 5 summary The table below summarises the levels of support, what they mean and the elements of key working required.

Level of support Intensive level of support

What does this mean? • Involvement of multiple practitioners -

• Practitioner must have time written

may benefit from a key working

into their job role to perform all key

practitioner who could dedicate a

working functions to an intense level

significant amount of their time, at

• Child / young person likely to have a

least in the early days or at times of

complex support package, provided

crisis, to offer this intense level of

by multiple practitioners and may

support.

include specialist clinical input

• Frequent and regular proactive

• Key working practitioner should

contact and responsiveness required

coordinate complex support package

in early stages

and Education, Health & Care Plan

• Need for multi-agency collaboration, especially in initial stages High level of support

Key elements

• Key working support could probably

• Personal budget could be used in conjunction with key working support

• Practitioner must have time written

be provided by a practitioner in a team

into their job role to perform all key

around the family

working functions to a high level

• Frequent and regular proactive

• Child / young person likely to have

contact and responsiveness required

quite a complex support package,

in early stages, but likely to reduce

provided by multiple practitioners

after a short period of time

• Need for multi-agency collaboration, especially in initial stages

• Key working practitioner should coordinate complex support package and Education, Health & Care Plan

• Some of these families may also have access to a personal budget which could be used in conjunction with key working support Moderate level of support

• Key working support could be provided by a practitioner in a team around the family

• Unlikely to have complex support packages – support will hopefully be met by Local Offer

Key working: improving outcomes for all

Level of support

What does this mean? • Unlikely to require frequent and regular proactive contact and responsiveness but they may require help with setting up a coordinated package of support or with organising the support they need

• Requirement likely to be short-term and light touch

Key elements • Education, Health & Care Plan might be required, but it may not be needed – possibly use the Common Assessment Framework or another coordinated plan

• Key working support could be used to enable the family to navigate their way through the elements of the Local Offer that they need and to put plans in place to ensure it happens

Key working: improving outcomes for all

6 The effectiveness of key working We have established the key working functions and how they might work in the model outlined above. However, the positive impact of key working on outcomes should be emphasised and this section further explores the evidence about the effectiveness of the key working functions outlined in Section 3. There is little doubt that key working makes a difference to families. Liabo et al (2001)20 concluded from a review of relevant literature that where a key worker system is present, the quality of life of families with disabled children is improved. They said: "Specific outcomes are better relationships with services, better and quicker access to statutory and discretionary benefits, both financial and environmental, and reduced levels of stress." (p3). Key working contributes to the empowerment of parent carers, who report better relationships with services, higher morale, less isolation and feelings of burden, improvements in receipt of information, access to services and fewer unmet needs, partnership and family involvement; those performing key working functions regard the support they can offer positively, reporting greater job satisfaction (Sloper et al, 200621). Key working functions should be underpinned by Early Support principles, which are:• The uniqueness of children, young people and families is valued & provided for. • A single multi-agency assessment, planning and review process is provided and delivered in partnership with children, young people and families, facilitated by key working support where appropriate. • Service delivery is holistic, coordinated and seamless. • Continuity of care is maintained through different stages of a child’s life and through their preparation for adulthood. • Children and young people’s learning and development is monitored and promoted. • Children, young people and families are able to make informed choices. • Wherever possible, families, children and young people are able to live ‘ordinary lives’. • Children, young people and families are involved in shaping, developing and evaluating the services they use. 20

Liabo, K., Newman, T., Stephens, J. and Lowe, K. (2001) A Review of Key Worker Systems for Disabled Children and the Development of Information Guides for Parents, Children and Professionals, Cardiff: Wales Office for Research and Development National Assembly of Wales. 21 Sloper, T. & Beecham, J. (2006) Using mixed methods to investigate effectiveness and costs of key worker services for disabled children. SPRU, University of York and PSSRU, Universities of Kent and Manchester

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• Multi-agency working practices and systems are integrated. • Children, young people and families can be confident that the people working with them have appropriate training, skills, knowledge and experience.

Key working is an approach facilitating effective partnership working in order to achieve a coordinated, person-centred, outcome-focused approach to assessment, planning and support where children, young people and their families require additional and sometimes complex support and interventions. It helps to build strong and resilient children, young people and families and enables a person-centred approach to support. However, we need to examine the evidence, from research and from parent carers, about what works in terms of the different functions we have outlined for key working practitioners.

6.1: Information and specialist support Families acquire information in an ad hoc way and not when they necessarily need it or want it. This in turn prevents a child, young person and their family from making informed choices about the support package they need and require. It is crucial that children and young people with additional needs and their whole family are fully informed in order to be involved meaningfully and effectively in the decision making process about their services and care package. This is particularly important at times of significant change in their lives. The provision of appropriate information can be an important aspect of families feeling empowered (Mitchell and Sloper, 200222). “I know there are mothers/families out there who wouldn’t have appreciated involvement from others but surely parents of disabled children should have the information immediately and decide themselves if and when they contact someone for help??? I was made to feel useless and completely unable to cope with all that comes with having a disabled child – if I had been given maybe just a leaflet when leaving hospital I could have a point of reference when I felt things weren’t going great. I could have been in control of who I contacted and when I contacted them.” A parent carer in Ashford The provision of information and advice about the range of services and support available to a family contributes significantly to supporting their resilience. It is also acknowledged that families may have a multitude of priorities and pressures and their stress levels can be heightened – things

Mitchell, W. and Sloper, P. (2002) 'Information that informs rather than alienates families with disabled children: developing a model of good practice', Health and Social Care in the Community, 10, 2, 74-81

Key working: improving outcomes for all

such as financial worries add to a families stress levels and it is important that families have the information they need and that they are supported to access relevant benefits and financial support. Nationally it has been reported by practitioners that in terms of information and specialist support, key working can support children, young people and their family through: • Finding out about what financial support may be available i.e. Family fund • Team Around the Child/Family meetings presenting an opportunity to share ideas and information • Signposting to specialist money advice services • Finding out about low cost specialist “short break” activities • Bringing specific knowledge to advise families An application of the key working approach can also lead to specific benefits for certain groups of children and young people. For example, CLIC Sargent is leading a project to develop key working roles across the 18 Principal Treatment Centres across the UK for children with cancer. The expected outcomes from the project, which will be formally evaluated during 2012 in partnership with the National Cancer Action Team, include: • Children with cancer safely spending more time at home • Better educational participation and achievement for children with cancer • Improved family and emotional well-being • Improved patient experience • Realisation of cost efficiencies Practitioners asked about the difference key working support can make in terms of information and specialist support report the following23: “Huge difference as families can access benefits that they did not know of and access grants and funding.” “A massive difference. It is very rare when we first meet a family for them to be in receipt of all their entitlements. We are able to work with national and local charities’ to ensure the family and children have the basics they require…… Others we have helped to meet their own career and work aspirations.”

Note that all quotes from parent carers and practitioners in this paper come from research undertaken by Early Support (2012) Questionnaire on key working across England and by Boyd-Wallis, K, KIDS (2012) The Development of Keyworking for Families with Disabled Children (see www.ncb.org.uk/earlysupport for more information) unless otherwise indicated.

Key working: improving outcomes for all

“Whilst ensuring the information needs of the parent/carers are met it also important to ensure that the information needs of other members of the family are met.” “… the family have benefitted from a weekend away at Cleethorpes with the Family Activity Grant Scheme…” A parent carer in June 2011 suggested that the difference this kind of support makes is “A listening ear then a guide to the right help” It appears that access to high quality, reliable information, when the child, young person and family need it, makes a significant difference to a family’s feeling of control and empowerment, as well as reducing their stress. Key working practitioners, as the single point of contact, are ideally placed to provide this information, signpost to information they don’t themselves have and help families to use the plethora of information that comes their way: Some parents also appear to value access to a practitioner who can advocate on their behalf, because they feel as if they know too little about the systems and services that they have to find their way through. Key working support can offer this advocacy, though evidence suggests (eg. Dale 1996)24 that advocacy is only useful where the child, young person or parent carer cannot be enabled to advocate for themselves.

6.2: Emotional and practical support The need for emotional support has emerged consistently from research about key working (e.g. Greco et al, 2005; Townsley at al, 2004; Mukherjee et al, 2000, op cit). Of course, it is only useful if the family feel they need it and key working practitioners should be guided by the family, not by their own assumptions. Often, emotional support can be simply a person to talk to, a listening ear or it can be someone who understands the family’s needs, aspirations and challenges. It is also important that effective and practical action is taken to improve service support in a way that ensures the family’s health and wellbeing remain strong. Key working is able to resolve situations, often at an early stage and thus prevent them from becoming much bigger problems. This helps to ensure that issues are not allowed to develop out of proportion, which in turn helps to maintain good relationships between practitioners and between practitioners and parent carers. A practitioner comments: “…. [It] is about listening to parents and acting on what they say it’s not about doing things to

Dale, N. (1996) Working with Families of Children with Special Needs, London: Routledge.

Key working: improving outcomes for all

them but doing things with and for them. This can be quite hard. In the jobs we do we are trying to achieve results and make things better but we need to give parents a voice in this” Practitioner Practical support can be advice, signposting or initiating a service and/or practitioner involvement. It can also be about drawing in the broader family members for support. Key working is crucial to ensuring that the package of support that is put in place alleviates emotional stress as much as possible. “Life became more manageable” Parent carer comment

“The family have been incredible happy with the amount of support that the key worker service has been able to provide both financially and emotionally. This is a teenage Mum who struggles with the language barrier and would not be able to access all that is available to her without help and support. A trusting relationship has been built up between the family and the key worker and they plan to attend parent support groups and events when baby is more stable” Practitioner comment Practical support is important to ensure children, young people and their families, including their siblings have opportunities to access peer support in a positive and proactive way. “Financial support and information around benefits entitlements childcare & short breaks. This can make an enormous difference to many families reducing pressure and helping to improve family relationships resulting in better outcomes for the child.” Brighton and Hove In a recent evaluation in Dorset the following was stated: “Both parents and professionals made reference to the fact that parents can struggle with the range of different professionals involved with their family and the different views, opinions and advice that can result. This was described by one Key Worker as help fatigue and can sometimes make parents appear to withdraw from services and some in fact do. The Key Worker role can be particularly beneficial in these circumstances. Having one individual to communicate with the family keeps the family ‘on the radar’. By working at the parent’s pace families can be encouraged to re-engage and even take on things that they would not have previously considered.” One parent carer in Dorset explained that her daughter, who is fed through a gastric tube, now goes to nursery one day a week which is helping her social development. At the same time the parent is able to do some voluntary work, which is good for her own well-being and confidence. This was facilitated by key working support. The parent carer said:

Key working: improving outcomes for all

“My Key Worker arranged for the nursery staff to have PEG training – otherwise I wouldn’t have put her in nursery. She also helped the nursery support the other children who were worried about the PEG. I feel confident leaving her at nursery and she loves it. Being able to leave your child in safe hands is such a great thing and X sorted all that. Up to then I hadn’t had a break from P. I know the nursery can deal with the PEG if it comes out. P loves it – it does her good to interact with other children and will help her when she goes to school next year. I now do voluntary work one day a week and it’s nice to do something for myself. I’d be devastated if they took it away.” Emotional and practical support for young adults is equally important - a 22 year old with Quadriplegic Cerebral Palsy in a focus group facilitated by KIDs in Hull said: “A key worker should be able to help everyone and not stop at 19 years. You don’t stop needing support just because you are older. Young people worry that if their main carer passes away there will be no one to help them no one to speak to and no one to fight their corner” Indeed we believe a key working approach should be promoted for all children and young people aged 0-25 to ensure the benefits can be reaped across the difficult period of transition from child to adult services. Important to consider, as part of emotional and practical support, is the effectiveness of coproduction and how parent carers and young people can contribute and partner more effectively with practitioners and services. Co-production is based on recognising the resources, skills and knowledge that parent carers and young people already have and configuring services and practices so that they are delivered with rather than for them. Early evidence25 suggests that this is an effective way to deliver better outcomes, often for less money. Evidence from an evaluation of McIntyre’s MyWay transition programme26 supports this. There are a number of ways that parent carers and young people can be positioned to become co-producers, working on an equal footing with practitioners and services. One way is to provide the Early Support parent carer workshops27. These workshops provide an opportunity for parent carers to build their confidence, increase their skills whilst also building family resilience. This empowers them to make the most of the opportunities for co-production that are on offer, ensuring a steady flow of knowledgeable parent carers to work in partnership with local services. Early Support is also developing workshops for young people, that have the same aim.

See, for example, www.nesta.org.uk/areas_of_work/public_services_lab/coproduction Broadhurst S, Yates K and Mullen B (2012) An evaluation of the My Way transition programme. Learning Disability Review, Vol 17, No,3, 2012 27 See http://ncb.org.uk/early-support/training/capacity-building-training/parent-carer-workshops 26

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6.3: Coordination Key working is essential to enable parent carers to have a sense of control over their family life and for them to recognise that effective intervention strategies result from their own actions, strengths and capabilities (eg. Dunst et al, 198828), not just from those of practitioners. Parent carers and young people feel more in control of the situation if they have been involved directly in the planning, development and delivery of their support. This sense of empowerment through the sharing of knowledge and involvement in decision making is key to strengthening families. Significantly, parent carers’ and young people’s satisfaction with their support package is commonly dependent on their sense that they have been listened to. It is not just a matter of resources being provided, but about the resources being those that satisfy the priorities, aspirations and wishes of the family. In aiming to enable parent carers and young people to feel in control, the support they receive and the planning that underpins that support needs to be coordinated. It is very difficult for parent carers and young people to coordinate this for themselves – the facilitation of a coordinated approach through key working support can make a significant difference. “Imagine you’re looking for a new job and come across an advert in the local paper. You have no experience for this whatsoever in terms of the skills and knowledge required the hours are horrendous and there’s no salary as its voluntary work. Outcome? You wouldn’t dream of applying and the employer wouldn’t consider you even if you did. Now consider a very similar scenario to the above - the only difference being this is very real as opposed to imaginary. You have a disabled child. You’re desperate to know how to help them but are still coming to terms with their disability and dealing with the full range of emotions this brings: denial, guilt, worry, fear, anger, grief. When you’re still at your most vulnerable you discover that the responsibility of finding out about, accessing and planning the range of services and support your child needs is down to you. You feel that service providers have little appreciation of the scale of problems that face you. This scenario is all too familiar to parents and carers of children with disabilities. There is a widespread view…that having a key worker to help access and coordinate services would considerably relieve the pressure on parents and carers. Also that the economic viability and effectiveness of overall service provision would improve as a result by avoiding duplication and focusing resource on where it’s most needed.” Parent

Dunst, C.J., Trivette, C.M., & Deal, A.G. (1988). Enabling and empowering families: Principles and guidelines for practice. Cambridge, MA.: Brookline Books.

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It helps not only families, but other practitioners working with the family: “It helps to have someone who can get the right people to the meeting and then having it organised and minutes sorted is great.” Practitioner There are a range of systems and processes used nationally with regards to access and coordination of services for disabled children, young people and their families. For many the process followed is linked to the Common Assessment Framework (CAF) and can be through what is referred to as a Single Point of Contact which leads to a Team Around the Child (TAC)

meeting and an identified lead professional/key worker where required, and a shared plan. Early Support’s 2012 research (op cit) includes some examples of how this works in local areas: • In Brighton and Hove the Common Assessment Framework is followed which leads to a Key Working Implementation Group and the support process flows from there. • In Cornwall an Initiation Form is triggered which leads to an Early Support Team Around the Child meeting. Broad criteria are used to ensure appropriate support and services are provided through this process. • Dorset has an open referral but all referrals are logged onto the Common Assessment Framework database. • Another area stated an "Open process offered as need arise and capacity/skills allows" • Havering have a pathway to a Multi-Agency Referral panel (MAR) for those children experiencing a significant delay, or likely to experience a significant delay in at least 2 developmental areas and for children with medical needs who are Involved with a number of different agencies. The process leads the family to a planning panel. • The charity Which Way Next Ltd in Leeds do not have a specific eligibility criteria and very much work with an open referral process which leads through a Common Assessment Framework process, with the outcome of a service plan. • South Tyneside utilise the Common Assessment Framework process but are currently awaiting approval of a "Standards and Professional and Parental Audit Tool", which includes the expectations of a health visitor to provide information to the family in a timely manner. Regardless of the approach used, it is important that the team working with the child, young

TAC has been defined in a number of ways, but basically it is a model of service provision where a range of different practitioners come together to help and support a child, young person and/or their family. 36

Key working: improving outcomes for all

person and family share a collective responsibility to deliver co-ordinated support, even when this is facilitated by a key working practitioner. This ensures that the child, young person and family experience seamless and integrated service delivery. In addition, TAC or Multi Agency meetings provide opportunities for practitioners to develop effective relationships with each other across service and agency boundaries – in fact, each TAC can become a continuing support system, not only for the family, but for the practitioners themselves who might otherwise feel they are sometimes on their own when facing great challenges presented by particular children and families. Moreover, having a practitioner take on the key working functions, leading the coordination and being the single point of contact, means that other practitioners’ and the family’s time is freed up, making a more efficient and effective system. After eight years’ experience as a paediatric oncology outreach nurse specialist, Jane Cope became one of CLIC Sargent’s first specialist nurse key workers. She is based at the Children’s Hospital of Wales in Cardiff and is very clear about the impact she can have in the role: “My aim is to help reduce the disruption that cancer brings by being the link for the child and family between hospital and home as well as supporting the GP and school. As a specialist nurse key worker I can help families to make sense of the maze of things they need to consider through diagnosis and treatment and help them to maintain as normal a life as possible.” And that is certainly the experience Louise Pennell and her son Thomas had when he was diagnosed with a brain tumour aged four: “We met Jane as soon as Thomas was diagnosed. As well as being a nurse she has been great at coordinating everything we need. During treatment there’s lots of support but after treatment ends you have to adjust to living with a child with cancer and that’s where Jane has been invaluable.” Parent carers’ experiences of this coordination function exemplify its effectiveness: “It has only been 2 months since we have had this key person taking some responsibility and listening to our concerns and liaising with the other agencies but the transformation for myself, my husband and our children has been huge. We can now focus on how to improve family life and feel so much less stressed because of this”. “We are lucky to have a social worker and she is also our key worker. This arrangement takes some of the pressure off as she will ring people for us and takes calls. She is an extra support for us. We have regular meetings regarding our child which the key worker service coordinator chairs and organises and these have been invaluable to us. Getting the professionals involved in [our

Key working: improving outcomes for all

child’s] care sat around a table is great as we can discuss ideas and solutions all together and we don't have to repeat ourselves so much. It also gives the professionals a chance to get updates on what the others are doing as it appears that sometimes there is a lack of communication between them. Minutes are taken by the key working team and an action plan prepared so that the professionals are accountable for certain actions which is really important to us. It took us a while to agree to be referred for the key working service but I'm really glad we did.”

6.4: Planning and joint assessment Key working is an approach that builds on partnership working with the disabled child, young person and their family and the practitioners working with them to facilitate the coordination of an integrated package of solution-focused support. Key working assures the following planning and assessment process – see diagram on following page. Parent carers and practitioners attest to the importance and effectiveness of joint planning and assessment: “… Mum has been “absolutely amazed” at how quickly the key worker became involved to begin support and coordination of services. As the little girl was until recently in hospital she feels that not only has she been offered funding help but have put in place services that will benefit the other 3 siblings; giving each child a little individual child with Mum. It was organised with the Children with Additional Needs Team to hold a full meeting so that all services involved and any future services can support Mum through a single Plan of Action.” Practitioner “We use a Luton version of the family support plan – used flexibly with families where we they/other professionals feel it will better aid coordination – sometimes services involvement is moving so fast that the document would be out of date by the time it has been written. For others it is a perfect document with which to share information and aid the meeting of family priorities.” Service Manager Stockton LA reported: “We have also developed our own resource - a ‘My File’ for the older children/young person that is based on the [Early Support] Family File. This has been differentiated to enable children of all abilities to complete.”

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A positive and trusting relationship with the family has been built

The child’s/young person’s and/or family’s priorities and concerns have been listened to, understood and shared, where appropriate and with fully informed consent

All those attending and contributing to the multiagency planning meeting have full information and shared intentions, and that the meeting is centred on the family’s and/or child/young person’s priorities, aspirations and concerns

The outcome of the meeting is a single, shareable, agreed action plan which identifies and can regularly review:• What has and has not worked since the last plan • The child’s/young person’s and/or family’s priorities now and in the future • The strategies that are going to be used to deliver support now and in the future • The key responsibilities of everyone involve • The agreed timeline for the delivery of the support • The agreed outcomes of the support • How the outcomes are going to be measured.

The feelings are totally different if the supportive single planning and joint assessment process is not in place: “It’s now 2012 and 8 years later the childcare support has not improved in any way. Easter is coming up and I’m having to work the 2 week period as I need to take 3 weeks leave later in the month as [my daughter] is having major surgery for scoliosis. For the entire 2 week Easter holiday period I have been offered just 7 hours at a suitable playscheme for those with complex needs. I then have to rely on family for the rest of the period. I’ve also moved house recently and to a 39

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different local authority and it’s a bit depressing to see that all these years later the same issues around waiting lists and piecemeal services are still prevalent. The only link between the minefield of services is me and I’m fed up by now of having to be a project manager at home as well as at work.” Parent carer’s experience As outlined in Section 5, the draft provisions of the Children and Families Bill and its proposed single planning and joint assessment arrangements offer positive opportunities to ensure that children, young people and their families receive a coherent and integrated approach, and that key working support can help them to navigate their way through this and to have their voice, their decisions, their priorities and their aspirations heard and acted upon.

7 What are the barriers to key working and how can we overcome them? Coverage of key working schemes is patchy at best (Greco et al, 2004), despite the fact that even as far back as 1976, in a Crown Report, parents were stating that they want a single point of contact with services and an effective, named person to get what they need for their child in terms of services. There are a number of factors that appear to work against the implementation of key worker services (Greco et al, 200530), most focused on the issues surrounding multiagency and integrated working. The table below shows some of the barriers and offers ideas to help overcome the barriers. Barrier to key working It is certainly the case that key working support is part of a service system and it relies on implementation taking place on an interagency basis. This means that all agencies need to sign up to this approach to support and all agencies need to be part of it at both strategic and practice levels. If all agencies (and the voluntary and private sector, where appropriate) do not sign up to the approach then it is very difficult to offer key working support. This will require effective and agreed approaches to integrated working practices.

Overcoming the barrier Greco et al (2005, op cit) outline research findings suggesting the following can support an integrated approach to working across agencies:•

Clear and realistic aims and objectives, which are understood and accepted by all agencies, leading to a clearly defined model of how the multiagency approach will operate in practice

•

Agreement about how resources will be pooled or shared

•

Clearly defined roles and responsibilities, so everyone knows what is expected of them

Greco, V., Sloper, P., Webb, R. & Beecham, J. (2005) An Exploration of Different Models of Multi-Agency Partnerships in Key Worker Services for Disabled Children: Effectiveness and Costs. Research report 656, DfE

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Barrier to key working

Key working is underpinned by collaboration between different disciplines. Lack of understanding and trust between disciplines undermines this.

Overcoming the barrier and of others •

Clear lines of responsibility and accountability

•

Commitment of both senior and frontline staff

•

Strong leadership and a multi-agency steering or management group.

•

An agreed timetable for implementation of changes and an incremental approach to change

•

Ensuring good systems of communication at all levels, with information sharing and adequate IT systems

•

Involving service users in development and evaluation of the service.

•

Shared and adequate resources, including administrative support and protected time for staff to undertake joint working activities.

•

Joint training and team building, and 'time out' to take part in these activities, which can promote understanding, respect and value for the roles of other practitioners

•

Appropriate support and supervision for staff.

•

Monitoring and evaluation of the service, with policies and procedures being reviewed regularly in the light of changing circumstances and new knowledge.

There are a number of things that can support collaboration – some of which are outlined above. One of the most effective ways to engender trust and encourage collaboration is to ensure that training is delivered to a multiagency audience, rather than being focused on service or specific professions. It can also help to ensure that parent carers and young people are involved not only in receiving the training but also in delivering it. This model has been used very effectively by Early Support since 2003. Another approach could be to have core and common training for all professions who want to work with children and young people with 41

Key working: improving outcomes for all

Barrier to key working

Overcoming the barrier additional needs. This training could include the skills needed for key working, as well as information about other agencies and services, with sharing of training location, trainers and materials. This involves significant change to current initial and continuous professional development systems (see also Section 5)

Key working requires a system of responsibility, accountability and quality assurance, not just of the key working support given but also of the involvement of other agencies and other practitioners. Key working support relies on all of the practitioners working with the family delivering what they promise to deliver – and if this support is not delivered then it relies on lines of accountability to ensure there are consequences for non-delivery that those delivering key working functions can rely upon. It is difficult for those who provide key working support if they do not have the status or systemic support to follow through on agreements made through the joint planning process – if on top of that there are no agreed, clearly set out and effective accountabilities built into the system then key working will not work.

It will be important to have clear accountability structures, across agencies, perhaps with a single commissioner role overseeing the whole system to ensure key working can be monitored, quality assured and supported and that those working with families who are receiving key working support can be accountable for the support they agree to deliver. Key working functions could be written into the job descriptions of all those working with children and young people with additional needs and their families, to ensure the relevant skills are developed and that the functions are clear. It is certainly the case that a large number of practitioners are currently delivering key working functions without having the structures, support or lines of reporting in place. If key working is to be the agreed and consistent method to ensure families get the support they need then the infrastructure, lines of reporting, supervisory systems, line management and strategic direction needs to be in place. HealthWatch (the new consumer champion for both health and adult social care) could play a useful role in the accountability structures.

Key working often has no status and other practitioners do not understand nor do they respect the importance of key working support. This can lead to a lack of effectiveness of key working support.

If clear lines of accountability are established, if everyone has key working as part of their job description and if the functions of key working and its strategic direction are clarified then this would no longer be a barrier.

Key working relies on agreed and joint referral systems and at least some element of joint commissioning and/or funding. Where these don’t exist it can be difficult for a single service to offer effective key working support.

One possible opportunity for enabling this is the new requirement for health and wellbeing boards to lead enhanced Joint Strategic Needs Assessments (JSNAs) and to have joint health and wellbeing strategies (JHWS). The boards will bring the major commissioners of public services for local people to a single table – for example, local government (including public health) and the NHS (organised around commissioning consortia). If it is agreed that key working support is part of their methodology for 42

Key working: improving outcomes for all

Barrier to key working

Implementing this approach to support can challenge working patterns and it can create significant change management – if the will is not there to effect this then the effectiveness of key working support can be reduced. Local Authorities and their health partners will need to be clear about what key working support means and what it can offer, not just to individual families but also to local aims to improve services and save money. If the benefits are not clear then there will not be the will to implement key working.

Overcoming the barrier meeting the needs of local children and young people with additional needs and their families then joint commissioning and planning is more likely. A comprehensive and robust JSNA could identify the scope for key working support, providing a coherent single needs assessment for all services to use, together with the opportunity to maximise value for money of such services across a locality. There is potential for a key working approach to deliver cost savings. For example, a Frontier Economics study estimated annual savings to the NHS of £4.4m if one-to-one support was put in place for all children and young people with cancer.31 The study also noted that there would be wider economic and societal benefits, in terms of improving educational attainment and earnings. CLIC Sargent’s project around developing key worker nurse roles in each of the specialist Principal Treatment Centres in the UK is also expected to deliver cost savings and this will be addressed as part of the evaluation to take place during 2012.

Eligibility criteria are often inflexible and focus on the severity of disability rather than the complexity of service input to the family

There needs to be some measure of flexibility concerning who should receive a service. Priority access to key working support perhaps should be provided to families with complex service input, but families are most likely to need this kind of support at the critical points of diagnosis and transition, regardless of complexity of service input. In addition, some vulnerable families whose children do not have complex needs may need key working support, even if it’s just for a short period. The system needs to be set up so it’s sufficiently flexible to enable this.

There is confusion about key working, key workers, link workers, support worker etc.

Move away from the role and move towards a function-based definition of key working support

Frontier Economics (2010) One to one support for cancer patients http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_122521 .pdf 43

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8 Systems, processes and structures Embedding a key working approach across the commissioning of all services for children and young people has the potential to significantly improve how these services are delivered and to subsequently improve the outcomes achieved by children and young people. We have discussed why key working is particularly suited to the needs of children and young people, given the much wider range of services involved in their care and support and the importance of getting services right during this critical period of growth and development. Crucially, an effective key working approach, as well as empowering children and young people and their families, could result in more efficient use of resources. It is essential that any system addressing the needs of children and young people with significant additional needs is equally able to meet the requirements of those with long-term impairments as well as those with fluctuating conditions where the period of acute input may actually be quite concentrated. The model we have therefore outlined in this paper is a flexible and responsive approach, which is able to tailor the type of key working support required to the needs of the child or young person. Time and again children, young people and their families tell us how key working can make such a difference to their experience of care, thus reflecting the key principle that services must reflect the needs and preferences of service users and their carers. However, it is clear that a presumption towards key working for children and young people will not happen without clear national direction and a drive to ensure this is embedded at all levels of the system, from local areas up to the Local Authority and NHS Commissioning Board. This is not to say that having key working as a clear national priority would compromise the ability of local commissioners to address local issues and priorities; rather the nature of key working presents a tool for commissioners to apply to these local priorities and to achieve improvements in outcomes for children and young people locally. For example, the changes currently embedding in the NHS and in education present important opportunities to create the culture change that is required. The prize is potentially improved outcomes and experiences for children and young people with significant additional needs.

Key working: improving outcomes for all

This section of the paper outlines the systems, processes and structures that may be utilised to enable and support a key working approach.

8.1 Accountability structures It will be important to have clear accountability structures, across agencies, , quality assured and supported so that those working with families who are receiving key working support can be accountable for the support they agree to deliver. Key working functions could be written into the job descriptions of all those working with disabled children and young people and those with Special Educational Needs (SEN) and their families, to ensure the relevant skills are developed and that the functions are clear. If key working is to be the agreed and consistent method to ensure families get the support they need then the infrastructure, lines of reporting, supervisory systems, line management and strategic direction needs to be in place. There are opportunities offered by new systems and structures currently being implemented. The detailed appendix (C) considers some of these

Key working: improving outcomes for all

8.2 Joint commissioning Commissioning is based on the process of assessing need, identifying resources available, planning how to use the resources, arranging service delivery (as opposed to operational management), reviewing the service and reassessing need32. Joint commissioning has the potential to bring innovation, value for money and improved services that cut waste and avoid duplication. There has been a drive to commission jointly for some years – Children’s Trust arrangements in many local authority areas have enabled this. The evidence report on Local Authorities' approaches to their Children's Trust arrangements can be found at www.local.gov.uk/web/guest/childrens-health/-/journal_content/56/10171/3655886/ARTICLETEMPLATE The Government’s Support and Aspiration: Progress and Next Steps paper gave a commitment to “legislate through the proposed Children and Families Bill to build on the framework introduced in the Health and Social Care Act and ensure that services for disabled children and young people and those with special educational needs are planned and commissioned jointly between local authorities and clinical commissioning groups”. This mandated approach to joint commissioning would enable an agreed approach to paying for and planning key working support across agencies, with buy-in from all services, including the voluntary sector. For this to be facilitated, the following might help:• The provision of training so that the potential of key working could be discussed, explored and understood • Exploration of how personal budgets might be used to purchase key working support, where children, young people and families request it and where it was part of the identified support in the Education Health and Care Plan • Examining the feasibility of including key working in the job descriptions of all those working with disabled children and young people.

8.3 Information sharing agreements A crucial element of key working approaches is the ability to share information across agencies and across practitioners. Putting the control of information in the hands of parent carers and young people can help resolve some of the information sharing issues, but it is important to have information sharing protocols in place to ensure key working practitioners can get and give the information needed to provide the best possible support to families. Information Sharing Protocols 32

Adapted from www.buckinghamshirepartnership.gov.uk/partnership/CYPT/joint_commissioning.page 46

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(ISPs) need to cover the exchange of information between partner agencies working with the family. The purpose of ISPs is to enable: • The best support to be jointly assessed, planned, provided and reviewed • The evaluation of the effectiveness of developing an inter-agency key working model of service delivery. • Support for the effective administration, audit, monitoring, inspection of services and reporting requirements. • Parent carers to support their child effectively and ensure their needs are met • Parent carers to communicate their child’s and family’s strengths and areas of unmet need • Young people to communicate their strengths and areas of unmet need • The identification and improvement of systems of communication • The improvement of appropriate and timely access to services • The identification of gaps in service provision • The identification and provision of supervision and training for key working practitioners There are a number of potential benefits of effective ISPs for parent carers, children and families, including:• Appropriate and timely access to services • Advice and information on services available • Support and guidance on how to access services • Opportunity to raise issues, within a supportive framework. Most ISPs ensure that only the minimum necessary personal information consistent with the purposes of the support is shared. An example of an ISP developed to enable information sharing for key working services is provided in Appendix D. This was developed in Wales as part of an Early Support funded project that was implemented across three Local Authorities, a Health Board and including the voluntary sector and all parties signed up to it and used it effectively.

Key working: improving outcomes for all

8.4 Supervision and management If key working coordinators were appointed, part of their role would be to offer supervision and direct management of the key working element of the work of practitioners who were offering key working support. However, if this role did not exist then a joint, cross agency approach to providing supervision and management for the key working element would be needed. This could come from an independent organisation, possibly in the voluntary sector, being commissioned using joint funding to provide this. It could also be enabled through training all managers in the sector to supervise and support key working functions. Early Support is currently considering the development and provision of this training.

8.5 Professional development Key working practitioners need training to ensure they understand the functions and can perform them all effectively. Early Support has been commissioned by the Government to provide national training, free at the point of delivery (until the end of September 2013). This training is focused on the key working functions, based on the Early Support principles. Capacity building for the delivery of the training will be offered, together with workshops for managers and practitioners to share good key working practice.

8.6 Awareness raising If children, young people and their families are not aware of the benefits of key working they will not be in a position to ask for this kind of support. If practitioners and their managers are not aware of the benefits of key working to them in their work and on a financial basis then they will not prioritise it as part of their job or as part of their funding and commissioning decisions. It is crucial that awareness is raised about the benefits of key working. In addition, if people do not understand what is meant by the term â&#x20AC;&#x2DC;key workingâ&#x20AC;&#x2122; then they will not be in a position to make decisions about where itâ&#x20AC;&#x2122;s needed and how to provide it. Awareness raising is crucial, from all points of view, for all those involved and at every level. Early Support is providing these papers to start the awareness raising, but an intense campaign of awareness raising is needed to ensure the most effective messages are communicated.

9 What about the costs? There has been very little research on the actual costs of key working compared with non-keyworking approaches to support for families. The benefits of key working (set out in our original position paper) are very well evidenced, but the costs are not. This is an area that Early Support is

Key working: improving outcomes for all

planning to research over the next 12 months and the outcomes of the research will be available in September 2013. However, some work has been done in Wales to examine this. An Early Support funded key working project in Wales was externally evaluated for effectiveness and value for money. The key working project was run across three Local Authorities and one health board. The ten practitioners who agreed to provide key working support did it in addition to their other work and all were from different agencies – there was representation from Health, Social Care, Education and the Voluntary Sector. The evaluation of the project, apart from the extremely positive findings on the experiences of families and practitioners, outlined some interesting findings about the costs of key working approaches. Although not ‘cost-neutral’ in its early stages, savings in the longer term were identified. The evaluation report states “Key-workers generally agreed that in establishing their initial relationship with families there was a need for some front-loading of input. Families involved with the scheme typically had complex needs which required from the key-worker support on a number of fronts. None of the key-workers saw their role as cost neutral in the early stages of their relationship but several did argue that initial intensive input could serve to save resources in the longer term with the family building resilience and capacity to cope with their situation”. Moreover, evidence from the survey of related practitioners, carried out as part of the evaluation, shows that 50% identified savings for their organisation that related to the key worker scheme. Twenty one of the twenty two related practitioners saw positive benefits for their service in relation to the key-worker scheme, primarily in relation to improved communication in relation to the child and family’s situation and enhanced multi-agency working. Another source of evidence is a Frontier Economics study33 commissioned by the Department of Health, which estimated annual savings to the NHS of £4.4m if one-to-one support was put in place for all children and young people with cancer. The study also noted that there would be wider economic and societal benefits, in terms of improving educational attainment and earnings. CLIC Sargent is currently leading a project testing a key working model of care in paediatric oncology. The charity is funding nurse specialist roles to provide key working for three years in each of the principal treatment centres in the UK for childhood cancer. The project will be independently evaluated during 2012 and 2013, and this will include demonstrating the economic value and cost benefits of the model in this setting. A report will be published in 2014.

Frontier Economics (2010) One to one support for cancer patients. A REPORT PREPARED FOR DH December 2010. Available to download from www.parliament.uk/deposits/depositedpapers/2011/DEP2011-1688.pdf 49

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10 About us and acknowledgements Early Support is a way of working, underpinned by 10 principles that aim to improve the delivery of services for disabled children, young people and their families. It enables services to coordinate their activity better and provide families with a single point of contact and continuity through key working. It focuses on ensuring that service delivery is child, young person and family centred and that services and practitioners work in partnership with children, young people and their families. Early Support is a core delivery partner for implementing the strategy detailed in Support and aspiration: A new approach to special educational needs and disability, the Government’s 2011 Green Paper. We would like to thank Clic Sargent and Together for Short Lives for their support, advice and encouragement in the writing of this paper. We would also like to thank the many people who commented on previous drafts, including:Anna Gill and Karen Wooddisse - parent carers, Early Support Regional Facilitators and trainers Brenda Mullen – McIntrye Christine Lenehan – Council for Disabled Children David Chater – Department for Education Kevin Williams and Sue Cawkwell – KIDS Nicola Gitsham – Preparing for Adulthood Tom O’Dowd – Special School Head Teacher And many others. Thank you all.

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Appendix A: Mapping key working functions to domains in the NHS outcomes framework Domain: Enhancing quality of life for people with long term conditions

Ensuring people feel supported to manage their condition

Domain: Ensuring a positive experience of care

Improving children and young people’s experience of healthcare

Key Working Functions

Key Working Functions in practice

Information and Specialist Support Enabling decision making and the use of personal budgets

•

Families are enabled to ask questions and to identify and communicate their priorities and decisions

•

Budget planning takes account of the diversity of families and resources are allocated to enable all families to make use of local services and expertise

Facilitating clinical care

•

account of the diversity of families and of children’s

seamlessly integrated with

needs and the practical issues surrounding day-to-day

specialist and universal services Providing information and

The core services children and families receive take

life with very young children •

Practitioners check that families with young disabled children have received information about ‘mainstream’

signposting

services for families in their area in addition to information about services for children and young people with disabilities •

Families are offered the opportunity to participate 51

Key working: improving outcomes for all

•

Families receive information that is accessible, uses everyday language and where appropriate, is available in a variety of alternative formats, media and languages

Planning and joint assessment Supporting a single planning

•

When families are using many different services, practitioners work together in partnership with parents

and joint assessment process

and carers, as a team •

When families are using many different services, assessment planning and review arrangements enable the development of agreed, shared priorities and integrated goals

•

Joint discussion and the writing of Family Service Plans is managed in a way that promotes partnership working with families and reflects their priorities.

•

Practices for sharing information about individual children and their families are defined and agreed with families

•

Families are given clear information about assessment procedures and practices, why they are needed, and how their contribution will be valued

Identifying the strengths and

•

The knowledge and understanding that a family has of a child’s needs and strengths is valued and used as a

needs of all family members

core part of joint assessment, planning and review processes •

There is an agreed process for identifying family strengths, needs and wishes that is sensitive and takes account of family diversity

Emotional and practical support Advocating on the child’s young

•

Disabled children, young people and families have access to coordination and if appropriate information

person’s and /or family’s behalf

and support so that children and families are involved in making decisions about the outcomes they wish to achieve. •

Support is available that promotes children and families’ social, emotional, cultural and spiritual well-being. 52

Key working: improving outcomes for all

•

Supportive practice is in place that enables children and families to express their views and preferences.

•

Effective relationships to promote individual choice with regard to children, young people and their families care.

•

Access to independent representation and advocacy with, and on behalf of, children and their families.

•

Systems and processes promote the individual’s rights to expect respect, and receive respect, for their diversity, difference and preferences.

Providing emotional and

•

Clear information is provided for families, children and young people about the range of services and options

practical support, as required,

available, and about how transitions between hospital

as part of a trusting relationship

and home, early years settings, schools and adult services will be managed. Families, children and young people are supported to understand information over time and in the context of their own circumstances.

Being a single point of regular

•

Processes promote the relevance of being a single point of contact and named individual for the family and the

and consistent contact

relevant services involved with the child’s package of support •

The single point of contact ensures, at the first meeting, the family have the details of other key contacts for specialist, universal and community based services

•

Facilitation of expert levels of liaison with other agencies and practitioners, both at frontline and strategic level, and across geographical boundaries.

The single point of contact is responsible for coordinating and by engaging with practitioners and establishing robust channels of communication Empowering children, young people and their families

•

When families move to another area or service, arrangements are in place to secure continuity of support and continued access to resources through the period of transition.

Key working: improving outcomes for all

Coordination Coordinating services and

•

Working practices are agreed between hospital trusts, clinics and acute services on the one hand and

practitioners around the child,

universal, community-based services on the other to

young person and family

ensure smooth transition between services for families •

It is clear where strategic responsibility lies for reviewing and improving the quality of integrated service delivery for families with young disabled children.

•

Joint policies and protocols underpin integrated service delivery from time of first referral onwards, and associated roles and responsibilities are defined and understood

Facilitating multiagency

•

When families, children and young people are in contact with many different people, a ‘team around the child’ or

meetings

‘team around the family’ approach is used to streamline and co-ordinate assessment, planning and service delivery. •

Families, children and young people understand the process of joint planning and are supported to play their part as partners in decision-making.

Joint discussion and planning addresses all relevant areas of family life.

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Appendix B: Example of a key working charter By [insert date within one year of signing charter] in our local area we will have… Enabled our children, young people and families to be confident that the people working with them have appropriate training, skills, knowledge and experience. Actively included children, young people and their families in shaping, developing and evaluating the key working support they receive. Provided better coordination of services for disabled children, young people and families by: • ensuring services are coordinated through multi agency meetings around children, young people and their families • maintaining a single, consistent and regular point of contact • ensuring continuity of care and a smooth transition to adult services for disabled young people preparing for adulthood. Ensured children, young people and families receive better Information & specialist support by: • providing clear information to support choice and control for parents that explains how we provide specialist services and also make universal services accessible • working together to provide access to advocacy on the child’s, young person’s and/or family’s behalf where appropriate • facilitating clinical care integrated seamlessly with specialist and universal services where appropriate Ensured children, young people and families receive emotional and practical support by: • enabling and empowering children, young people and their families to make decisions and use their personal budgets in a way that is most effective for them • providing holistic, coordinated and seamless services whilst providing emotional and practical support Ensured effective planning and assessment for children, young people and their families by: • providing a single multi agency assessment, planning and review process which is in partnership with children, young people and their families • working in partnership to identify the strengths and needs of all family members

Signed Position Date 55

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Appendix C: Details of the systems and structures that could underpin a key working approach Health & Wellbeing Boards Health & Wellbeing Boards (HWBs) have a dual role in overseeing commissioning and in promoting integration. They are therefore extremely well placed to set a local example in promoting key working for children’s health and care services. Specifically: •

Health and wellbeing strategies – HWBs will lead on local health and wellbeing strategies which should therefore outline a commitment to putting in place a key working approach for children and young people.

•

Key working charter – We believe there is merit in working with partners such as Early Support to develop a key working charter which would set out for local areas what a commitment to key working means in practice. This would also enable commissioners, providers, local areas etc. to demonstrate a practical and organisational commitment to key working which is what will actually make the difference for children and young people. An example of a key working charter is provided in Appendix C.

•

Pooling budgets – HWBs are similarly well placed to put in place pooled budgets for children’s health and care services, from which the joint administrative function (see below) could be funded for example

•

HealthWatch (the new consumer champion for both health and adult social care) could play a useful role in the accountability structures.

NHS Commissioning Board Despite the importance of local bodies, including HWBs as outlined above, as the overseer of the new system the NHS Commissioning Board clearly could be one of the facilitators for a key working approach for the whole range of children’s services. Indeed, the King’s Fund has noted that whilst important, the creation of HWBs will not in itself lead to the removal of barriers to joined-

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up care but rather a stronger national framework for integrated care is required.34 Accordingly, this framework for integration should incorporate a presumption towards key working for children and young people. An important function for the NHS Commissioning Board will be the direct commissioning of specialised services which cater for those children and adults with very rare conditions. Clinical commissioning groups (see below) would not be well placed to commission these services because of the small population sizes – these groups would be unlikely to show up in local Joint Strategic Needs Assessments for example. The Commissioning Board and its regional arms will have a role to play in ensuring key working is in place for those children and young people who require specialist provision. Whilst HWBs and CCGs will have some involvement in the generalist services that may be accessed by these children and young people, it will not be possible for them to influence the specialist elements of their care pathways. A key working approach is already well embedded in certain pieces of best practice guidance, the NICE Improving Outcomes in Children and Young People with Cancer guidance being one example35, but would be significantly aided by the Commissioning Board promoting and supporting change at the local, regional and national level.

Clinical Commissioning Groups (CCGs) From April 2013, a new approach to designing local health services in England will be established. Clinical Commissioning Groups, announced in the ‘Equity and Excellence: Liberating the NHS’ White Paper (2010), will be responsible for commissioning health and care services, ranging from elective hospital care to mental health and learning disability services, and urgent and emergency care as well as community health services. These CCGs are groups of GPs, mostly groups of GP practices within a local area, who work with patients and healthcare practitioners and in partnership with local communities and local authorities. All GP practices will belong to a CCG. Each CCG will have a governing body, which will include (in addition to GPs) at least one registered nurse and a doctor who is a secondary care specialist. Wherever possible, CCGs will remain within Local Authority boundaries, but there may be more than one CCG per Local Authority. Although CCGs will not, on their own, be responsible for commissioning expensive specialist services (see section on NHS Commissioning Boards above), they could take an approach to providing care pathways for disabled children and young people that included key working as an underpinning approach and that ensured key working was part of the job descriptions of those 34

The King’s Fund (April 2012) Health and wellbeing boards – System leaders or talking shops? http://www.kingsfund.org.uk/publications/hwbs.html 35 This can be accessed online at http://guidance.nice.org.uk/CSGCYP

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delivering the services they commission. CCGs could play an important role in ensuring key working approaches are adopted as a matter of course for those children, young people and families who would benefit from a coordinated package of support with a single point of contact.

The NHS Outcomes Framework The NHS Outcomes Framework is designed to be an important driver for quality improvement and outcomes measurement, as well as functioning as a key accountability mechanism between the Secretary of State and the NHS Commissioning Board. As well as creating a national priority of a presumption towards key working for services accessed by children and young people with significant health needs, there must also be a clear accountability mechanism to ensure this happens. Part of the key working charter outlined above could therefore set out how embedding a key working approach can help commissioners to achieve particular outcomes. The table below outlines how key working helps support the delivery of some of those NHS and Public Health outcomes relevant to disabled children and young people.

Outcome

How key working can help NHS outcomes framework

Domain 1: Preventing people from

Joint assessment and planning process, coordinated by a

dying prematurely

single point of contact, can ensure that children, young

10.1.1.1 10.1.1.2

people and families do not fall through the gaps in services and that issues are identified early, with an emphasis on early intervention. In addition, that single point of contact can ensure that joint plans are followed through, implemented and effectively reviewed.

Domain 2: Enhancing quality of life for people with long-term conditions Domain 4: Ensuring that people have a positive experience of care Domain 5: Treating and caring for

â&#x20AC;˘ Information and specialist support key working functions can support decision making and the use of personal budgets, enabling families to ask questions and to identify and communicate their priorities and decisions. This would also mean that budget planning takes account of the diversity of families and resources 58

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people in a safe environment and

are allocated to enable all families to make use of local

protecting them from avoidable harm

services and expertise.

• Key working practitioners check that families with young disabled children have received information about ‘mainstream’ services for families in their area in addition to information about services for children and young people with disabilities and serious health conditions. They can ensure that families receive information that is accessible, uses everyday language and where appropriate, is available in a variety of alternative formats, media and languages • Key working practitioners provide a single point of regular and consistent contact, ensuring that the family have the details of other key contacts for specialist, universal and community based services • Key working approaches facilitate expert levels of liaison with other agencies and practitioners, both at frontline and strategic level, and across geographical boundaries. • The single point of contact is responsible for coordinating and engaging with practitioners and establishing robust channels of communication. This ensures families know that the approach they are receiving is joined up and streamlined. The need for families to ‘battle’ for the support they know their child and family needs is reduced or eliminated. • When families move to another area or service, key working practitioners can help them to ensure arrangements are in place to secure continuity of support and continued access to resources through the period of transition. • Key working approaches ensure that working practices are agreed between hospital trusts, clinics and acute services on the one hand and universal, community59

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based services on the other to ensure smooth transition between services for families • Key working approaches ensure that joint policies and protocols underpin integrated service delivery from time of first referral onwards, and associated roles and responsibilities are defined and understood • When families, children and young people are in contact with many different people, a ‘team around the child’ or ‘team around the family’ approach will be used to streamline and co-ordinate assessment, planning and service delivery. • Families, children and young people will have much better understanding of the process of joint planning and are supported to play their part as partners in decision-making. • Key working approaches ensure that joint discussion and planning addresses all relevant areas of family life. Public health outcomes framework Domain 1: Improving the wider determinants of health

• Key working practitioners can identify the strengths and needs of all family members. This will enable the knowledge and understanding that a family has of a child’s needs and strengths to be valued and used as a core part of joint assessment, planning and review processes • Key working practitioners can ensure there is an agreed process for identifying family strengths, needs and wishes that is sensitive and takes account of family diversity • Key working practitioners can advocate on the child’s young person’s and /or family’s behalf • Disabled children, young people and families will have

Key working: improving outcomes for all

access to coordination and if appropriate information and support so that they are involved in making decisions about the outcomes they wish to achieve. • Key working support promotes children and families’ social, emotional, cultural and spiritual well-being and provides supportive practice that enables children and families to express their views and preferences. • Key working systems and processes promote the individual’s rights to expect respect, and receive respect, for their diversity, difference and preferences. • Key working practitioners provide emotional and practical support as part of a trusting relationship • Key working practitioners provide clear information for families, children and young people about the range of services and options available, and about how transitions between hospital and home, early years settings, schools and adult services will be managed. • Families, children and young people are supported to understand information over time and in the context of their own circumstances.

Joint strategic needs assessment(JSNA) One possible opportunity is the new requirement for health and wellbeing boards to lead enhanced Joint Strategic Needs Assessments (JSNAs) and to have joint health and wellbeing strategies (JHWS). The boards will bring the major commissioners of public services for local people to a single table – for example, local government (including public health) and the NHS (organised around commissioning consortia). If it is agreed that key working support is part of their methodology for meeting the needs of local children and young people with additional needs and their families then joint commissioning and planning is more likely. A comprehensive and robust JSNA could identify the scope for key working support, providing a coherent single needs assessment for all services to use, together with the opportunity to maximise value for money of such services across a locality. 61

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In addition, those providing key working support can gather information that can inform a number of different local planning and improvement strategies. They could feed in to the Joint Strategic Needs Assessment (JSNA), not just by identifying the scope for key working support, but also by identifying gaps in service provision identified as part of their coordination function for families.

Key working coordinator Whilst a designated key worker role may only be required for those at the specialist end of the spectrum who require a particular input, it is also the case that key working functions should also be built into the roles of other practitioners who may for instance be based in the community (e.g. children’s community nurses). We would not advocate simply ‘tacking on’ a key working function into the roles of practitioners who may already have a significant caseload without some form of additional resource. A key lesson learned from many of the case studies cited earlier is the provision of an administrative resource which local key workers can access. This would ensure that key workers can focus the majority of their time on working with children and young people whilst the administrative support is able to chase up appointments, for example. Some areas with a non-designated key working approach have identified the need to have a key working coordinator role. This role ensures that key working practitioners receive the administrative, practical and supervisory support that they require and that the key working system operates effectively. An example of the key working coordinator role description is provided below.

Example of key working coordinator role36 Separate coordinators would be needed for different age groups to ensure the right kind of knowledge is held in order to provide the right support and information to families who have needs very specific to a particular age group. The coordinators undertake the following main tasks: • Make the initial visits and responses to referrals and offer key working support immediately, without having to wait for input from other practitioners • Support families within the system and keep up with changes (which will involve the key working coordinator to have knowledge and confidence) • Support the key working practitioners chosen by the families, for a minimum of 6 meetings a year and individual support 36

This is based on an approach used in the London Borough of Bromley 62

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• Act as Early Support leads even for those families where another person is key working and chairing the multiagency meetings • Be able to take over the key working support from an existing key working practitioner if a crisis arises requiring more time and/or knowledge • Provide key working support for families with more complex and time consuming needs • Have an overview of trends and patterns for families, which could inform local practice and strategy • Contribute at senior management level the issues and developments within the service.

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Appendix D: Example of an Information Sharing Protocol (ISP) to support key working

Part A – Introduction to this ISP Scope and purpose of this ISP This Information Sharing Protocol (ISP) is supplementary to the Wales Accord on the Sharing of Personal Information (WASPI), and has been agreed between the participating partner organisations. Partners have given consideration to its contents when drawing up this document. This ISP has been prepared to support the regular sharing of personal information as part of the Early Support Programme for the Inter-Agency Key Worker Project. It supports the information sharing partner organisations involved and the groups of Service Users it impacts upon. It details the specific purposes for sharing and the personal information being shared, the required operational procedures, consent processes, and legal justification. The aim of information sharing is to develop an effective Key Worker model of practice for the population of [three Welsh Local Authorities]. This Information Sharing Protocol covers the exchange of information relating to the Key worker pilot between partner agencies, these include: XXX Health Board, XX, XXX and XXXX Local Authorities, which include Social Services, Education, CYPP and Action for Children, BAVO, NPTCVS, xx CVS, XXCVSO and XXCVSO. The specific purpose of this information sharing is to evaluate the effectiveness of developing an inter-agency key worker model of service delivery for the child population of XX, XXX and XXXX within existing resources. This information may also be shared to support the effective administration, audit, monitoring, inspection of services and reporting requirements. Partners may only use the information disclosed to them under this ISP for the specific purpose(s) set out in this document.

High level functions of this ISP The functions which this information sharing protocol community are seeking to support involve: •

Identifying and addressing training needs

•

Identifying and improving systems of communication

•

Improving appropriate and timely access to services

•

Supporting Parents/Carers to effectively manage the needs of their Disabled Child.

Personal information shared to support functions other than those detailed above are not supported by this ISP.

Service Users included in this ISP The Service Users which this ISP relates to include:

•

Parents and all Carers of Children with disabilities, living within XX, XXX and XXXX

•

Children with disabilities, living within XX, XXX and XXXX

•

Siblings and extended family of Children with disabilities, living within XX, XXX and XXXX.

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Benefits to Service Users Benefits to the Service Users include:

•

Appropriate and timely access to services

•

Advice and information on services available

•

Support and guidance on how to access services

•

Opportunity for parents and carers to raise issues, within a supportive framework.

Details of personal information being shared Personal information shared for the purpose of this ISP includes a range of information regarding the Service Users needs. The information shared might therefore include:

•

Identifying details of the Child and family

•

Identifying Key Worker details

•

Nature of the child’s disability and developmental needs

•

Agencies/practitioners known to the family

•

Environmental factors that impact on the Child and Family.

The information is used to improve the coordination of services delivered to the service user and evaluate the effectiveness of a key worker model of practice. Only the minimum necessary personal information consistent with the purposes set out in this document must be shared.

Key identifying information When sharing information, the following identifiers will be used where available, to ensure that all partner organisations are referring to the same Service User: •

Name of Child and Parent / Carer

•

Date of Birth

•

Address

•

Postcode

Key working: improving outcomes for all

The information sharing partner organisations This ISP covers the exchange of information between staff of the following organisations that are engaged in delivering the service outlined in this document: Information Sharing Partner Organisations To be completed based on organisations signed up: XX Health Board

Responsible Manager [Insert managers job title here]

City & County of XX XX County Borough Council XX County Borough Council XX Association of Voluntary Organisations XX Council of Voluntary Services XX Council of Voluntary Services National voluntary sector organisations Local voluntary organisation The responsible managers detailed above have overall responsibility for this ISP within their own organisations, and must therefore ensure the ISP is disseminated, understood and acted upon by relevant staff. Staff of these partner organisations who work directly with Service Users in order to carry out the functions described in this ISP, are bound by this document. The term â&#x20AC;&#x2DC;staffâ&#x20AC;&#x2122; encompasses paid workers, volunteers, students and other temporary workers approved by the employing / hosting organisation, whose duties include those relating to the functions outlined in this ISP. Partner organisations will ensure that all current and newly-appointed staff receives appropriate training in the application of this ISP and the requirements of the WASPI framework.

Key working: improving outcomes for all

Part B – Justification for sharing personal information Please note: Staff should not hesitate to share personal information in order to prevent abuse or serious harm, in an emergency or in life-or-death situations. If there are concerns relating to child or adult protection issues, the relevant organisational procedures must be followed. Legislative / statutory powers Disclosure of information will be conducted within the legal framework of the Data Protection Act 1998 (DPA), the Human Rights Act 1998 and in compliance with the common law duty of confidence.

Consent Consent is normally required to share information between different partner organisations. To provide valid informed consent the Service Users or their lawful representatives, must be provided with appropriate information to enable them make an informed decision. Implied consent is given when a Service User takes some action in the knowledge that in doing so he or she has incidentally agreed to a particular use or disclosure of information. Explicit consent is given by a Service User agreeing actively, either verbally or in writing, to a particular use or disclosure of information. It can be expressed either verbally or in writing, although written consent is preferable since that reduces the scope for subsequent dispute. Consent must not be secured through coercion or inferred from a lack of response to a request for consent. The Practitioner must be satisfied that the Service User has understood the information sharing arrangements and the consequences of providing or withholding consent. Consent should not be regarded as a permanent state. Opportunities to review the Service User’s continuing consent to information sharing should arise during the course of the service provision. The Practitioners should exercise professional judgement in determining whether it would be appropriate to re-visit a Service User’s continued consent at any given juncture. Ideally it should take place in the context of a review or re-assessment.

Part C – Operational procedures for this ISP Summary Only the minimum necessary personal information will be shared on a need-to-know basis and only when it supports the delivery of the purposes and functions set out in this ISP. Personal information will only be collected using the approved collection methods, ensuring the required information is complete and up-to-date. All reasonable steps must be taken to ensure that anyone who has received information is notified of any relevant changes and if any inaccuracies are found the necessary amendments will be made. Decisions about Service Users should never be made by referring to inaccurate, incomplete or outof-date information. Information provided by partner organisations will not be released to any third party without the permission of the owning partner organisation. Staff must also follow their own organisation’s procedures relating to the handling of personal information. 67

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Please note: Staff should not hesitate to share personal information in order to prevent abuse or serious harm, in an emergency or in life-or-death situations. If there are concerns relating to child or adult protection issues, the relevant organisational procedures must be followed. Fair processing information It is necessary to communicate with the Service User or their lawful representatives about the need for information sharing at the earliest appropriate opportunity, preferably at first contact. Being clear and open with Service Users about how their personal information will be used, will allow them to make an informed decision regarding consent for the sharing of their information. Partner organisations will clearly inform the Service Users about what personal information is to be shared, who the information will be shared between, why it needs to be shared and for what purposes it will be used for. Agreed methods of providing this information are: • In person • By phone • By facsimile • By post

Obtaining consent The approach to obtaining consent should be transparent and respect the Service User. For the purposes of this ISP, explicit consent will be required from Service Users. Partner organisations should be prepared to be open with their Service Users about the role that their consent plays in the information sharing process and indeed be clear about the type of circumstances in which they may share personal information without their knowledge or consent. If there is a significant change in the use to which the information will be used compared to that which had previously been explained, or a change in the relationship between a partner organisation and the Service User, then consent will be sought again. Consent obtained from Service User’s for the purposes of this ISP will only be used to support the delivery of the purposes and functions set out in this document. Once the service provision of this specific ISP concludes, then consent obtained will also end. In the event of a similar or subsequent service provision undertaken in the future, new consent will be obtained. Staff should use opportunities such as reviews or assessments to reaffirm the Service User’s consent to the sharing of information outlined in this ISP.

Refused and withdrawn consent A Service User has the right to refuse their consent to have information about them shared. They also have the right to withdraw previously granted consent at any point, to the sharing of their information. Further personal information should not then be shared. Where the Service User has refused or withdrawn consent, the implications of withholding consent will be clearly explained to them and this dialogue will be recorded in the appropriate organisation’s client records. If a Service User withdraws consent to share personal information it will also be explained that information already shared cannot be recalled. See section 15 below, for further information.

Recording consent 68

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Decisions regarding Service Users’ consent of how and when it was obtained and whether it was provided in verbal or in written form, must be recorded in the client records of the organisation who initiated consent. Details of refused or withdrawn consent should also be recorded together with any subsequent reviews of consent.

Sharing information without consent Staff are permitted to disclose personal information without consent in order to prevent abuse or serious harm to others. If there are concerns relating to child or adult protection issues, staff must follow the relevant local procedures of their partner organisation. Personal information can be lawfully shared without consent where there is a legal requirement or where an appropriate professional of sufficient seniority within the partner organisation, has taken the view that the duty of confidentiality can be breached in exceptional circumstances and where there is a substantial over-riding ‘public interest’. Such situations where information might be shared without consent include: • • • •

‘Life and death’ situations, for example, where information is shared in an emergency in order to preserve life; Where a person’s condition indicates they may be a risk to the public or may inflict self-harm; In order to prevent abuse or serious harm to others; On a case-by-case basis, to prevent serious crime and support detection, investigation and punishment of serious crime.

This is not an exhaustive list. If a claim of substantial public interest is made, justification will be clearly stated and any decision to share information with another party without the consent of the Service User will be fully documented in the organisation’s client records. This note will include details of the legal requirement used or details of the relevant senior professional who authorised the sharing. The Service User will usually be informed of this decision and of the information which has been shared; unless by doing so it would risk harm to others or hinder any investigation or legal proceedings.

Actions to be taken where a Service User lacks mental capacity The Mental Capacity Act 2005 Code of Practice defines the term ‘a person who lacks capacity’ as a person who lacks capacity to make a particular decision or take a particular action for themselves, at the time the decision or action needs to be taken. Whenever dealing with issues of capacity to consent, local rules and procedures should be followed and these must be compatible with the Mental Capacity Act 2005 and its Code of Practice.

Temporary impairment of capacity Where a person has a temporary loss of capacity, consent will be deferred, if appropriate, until such time as consent can be obtained. Consent to share information will be sought when capacity is regained. Where it is not appropriate to defer the sharing of information, then it will not be appropriate to defer consent, as consent cannot be obtained retrospectively. Therefore, only where deemed necessary, may information be shared without consent, see section 16 above for further information.

Information collection 69

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The approved collection tools for partner organisations to gather the personal information detailed in this ISP are: •

Early Support Family Plans

•

Individual Client Records of participating organisations

Frequency of information sharing The personal information outlined within section 5, will be only be shared on a need-to-know basis to support the functions of this ISP. Partner organisations will share relevant personal information as appropriate. Should changes be made to a record, all reasonable efforts must be taken to ensure that anyone who has received a copy of the record is also alerted to the change.

Information security Breaches of security, confidentiality and other violations of this ISP must be reported in line with each partner organisations’ incident reporting procedures.

Complaints Each partner organisation has a formal procedure by which Service Users can direct, their complaints regarding the application of this ISP.

Review of this ISP This ISP will be reviewed at end of project – April 2012 or sooner if appropriate.

Part D – Methods and controls for the sharing of personal information to support this ISP Information flow The key workers, users, parents/carers and other professionals involved in each child’s care and whose organisations are signed up to this ICP can share personal information where explicit consent has been obtained from the parent/carer and where it is necessary to ensure the improved coordination and/or delivery of services. This information flow will be reviewed and updated as necessary, to reflect any changes in the processing of personal information detailed in this ISP.

Key working: improving outcomes for all

Early Support: Parental Consent to Information Sharing Family Name

Child’s Name

Address

DOB Male

Female

Home Telephone Number Mobile Number The Early Support pilot is a multi agency partnership across local authorities of X, XX, XX, Health Board, and the voluntary sector, on behalf of the Welsh Government to deliver a key worker system for children under 5. As part of enabling you to access ad co-ordinate services, the keyworker will need to share information with other professionals, with your consent, to ensure that services are co-ordinated, timely, and that best meet the needs of you and your family. Early Support will be monitored by the Welsh Government. I understand that: Information sharing across professionals in supported by legislation and guidance, in particular the Children Act 2004. Early Support is working towards an information – sharing protocol, but that in the mean time professionals will work to their own policies and procedures. I therefore give my consent to my Key worker: Name: …………………………………………………… Profession: …………………………………………....… …………………………………

Tel:

To act on my behalf, to enable better co-ordinated family focused services to support me and my family I agree to my key worker, named above, sharing information with other professionals, and that they will have access to information from other professionals that affect me and my families welfare and wellbeing. This will ensure that services are co-ordinated and timely, and family led in response to need. I am the person/s with legal parental responsibility for the child on the form: Signature: …………………………………….…..……… ……………..………………………….

Date:

I understand I can withdraw my consent at any time, by writing to the person named above, who will advise the appropriate person/s.

Key working: improving outcomes for all

Wales Accord on the Sharing of Personal Information Information Sharing Protocol for XXX

Signature Sheet XXX Health Board Signature: …………………………………. Designation: ………………………………….. Local Authority 1 Signature: …………………………………. Designation: ………………………………….. Local Authority 2 Signature: …………………………………. Designation: ………………………………….. Local Authority 3 Signature: …………………………………. Designation: ………………………………….. Association of Voluntary Organisations in Local Authority 1 Signature: …………………………………. Designation: ………………………………….. Voluntary Services in Local Authority 2 Signature: …………………………………. Designation: ………………………………….. Voluntary Services in Local Authority 3 Signature: …………………………………. Designation: ………………………………….. Individual Voluntary Sector Organisation 1 Signature: …………………………………. Designation: ………………………………….. Individual Voluntary Sector Organisation 2 Signature: …………………………………. Designation: ………………………………….. Individual Voluntary Sector Organisation 3 Signature: …………………………………. Designation: …………………………………..