A vision for our lives Kirklees carers vision and strategy 2010-2015
April 2010
Contents
Page
Foreword
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Background • Who is a carer? • Why is it important to support carers? • The national picture - facts and figures, key national drivers, the national carers strategy
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The local picture – where we are now • Some facts and figures • Social care transformation – Putting People First • Involving carers • Support and services for carers in Kirklees • Issues, pressures and gaps • Information form the vision event 2007
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Kirklees vision for carers – where we want to be
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Kirklees carers strategy – how we will get there
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Over to you – your stories
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Welcome to the Kirklees Carers Strategy 2010 We have been working closely with carers and carer organisations, and our partners in NHS Kirklees and voluntary and community organisations over the past few years to offer the best possible advice and support to unpaid carers in Kirklees. We have achieved a lot over the years including the development of Carers Gateway, dedicated carers support workers and carers’ champions in assessment teams - but there is still more to do if we are to give unpaid carers the help and support they need to live life to the full while carrying out their caring roles. Many of the changes have taken place under the guidance of the Carers Strategy Group. This group has representation from carers, local carer organisations, the council and the NHS. Significant legislative changes have taken place over the past few years. Carers are now highlighted as 'key partners in the provision of care'. Also, carers are now entitled to an independent assessment of their ability and willingness to provide care. Increasingly health and social care services are being delivered in a more personalised way. The Government has asked local authorities like Kirklees Council to change the way we deliver adult social care services to make sure we continue to put people first. This change is called ‘the transformation of adult social care’. Our aim is to make sure that carers can live the life they wish, knowing that services are of high quality, are safe and tailored for them and the person they care for. The support they receive aims to help them live independently, while maintaining their well-being and dignity and offering those they care for more choice and control over their life. Carers should be enabled and supported to experience life as equal citizens who enjoy a life of their own, have good health, and who are not financially disadvantaged by their caring role. This vision and strategy for carers in Kirklees ’A Vision for our Lives’ mirrors the outcomes, requirements and expectations of the 2008 National Carers Strategy Carers at the Heart of 21st Century Families and Communities. “A Caring System on your side. A Life of Your Own” and is written in consultation with local carers and other stakeholders. It describes how carers would like to experience their lives as citizens in Kirklees and outlines how we will work with carers and partners to achieve this over the coming years. Further work is needed to ensure continued improvement for carers. This strategy reviews the progress made and sets out an action plan for the work needed over the next five years. We hope you find this information useful and informative and that it gives you a greater awareness of the issues facing carers. We also hope you gain a better understanding of how we plan to support, inform and involve unpaid carers in Kirklees.
Merran McRae Director for Kirklees Council Well-being and Communities
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Background Who is a carer? There is much confusion about the term ‘carer’. Sometimes paid care workers are called ‘carers’. Sometimes parent or family carers don’t recognise themselves as ‘carers’, but simply as parents, or husbands, wives, daughters. Likewise those who care for the person next door view themselves only as good neighbours, and so on. This can lead to problems: • • •
They become ‘hidden carers’ These ‘hidden carers’ don’t seek the support or benefits that they deserve, need and are entitled to Many people confuse ‘care workers’ with carers, which leads to a lack of recognition for carers.
Like the Government we in Kirklees want there to be a clear definition of the term ‘carer’ to avoid confusion and to ensure that carers are properly identified, recognised and supported. The legal definition of a carer used in the Carers and Disabled Children Act 2000 is:
An individual over 16 who “provides or intends to provide a substantial amount of care on a regular basis for another individual aged 18 and over.” While in Kirklees we recommend a definition based on that in the 2008 National Carers Strategy:
‘A carer of any age spends a significant proportion of their life providing unpaid support to family or friends. This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems’ The Government is going to carry out a full review of this definition to see whether it should be adopted. •
This vision and strategy document intends to include all carers; adult carers, parent carers, young carers and working carers.
Why is it important to support carers? The national and local information about carers below highlights the vital role that carers play in our communities today, not least saving the economy an estimated £87 billion per year, the annual cost of the National Health Service. However, and more importantly we should consider the effect that caring can have on the lives of carers. While for many carers their role is very positive and one which they would not want to relinquish, caring can have many other less positive impacts on: • • • • • •
Physical health Emotional wellbeing Other relationships Financial stability Other roles and responsibilities Education, training and employment prospects
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• • • •
Social and leisure activities Cultural and religious activities Geographic mobility Equality
It is therefore vital that everyone involved in supporting carers particularly Kirklees Council and NHS Kirklees recognise that carers are ‘everybody’s business’ and are best supported when they and the person they care for receive effective support from all agencies.
The national picture Some facts and figures (taken from the 2001 census). • Nationally carers are increasingly providing a significant proportion of community care as services target provision on those with the highest need • The census shows that in the UK six million people are currently unpaid carers. An additional two million people become carers each year. This represents approximately 12% of the adult population • In the future most people's lives will include at least one episode of unpaid caring. Carers UK estimate that currently three people in every five will be a carer at some point in their life • Nationally the peak age for caring is between 50 to 59 • Women have a 50:50 chance of providing care by the time they are 59, compared with men who have the same chance by the time they are 75 • 58% of carers are female, 42% are male • There are currently over three million working carers in the UK • National research shows that one in five carers (20%) give up work as a direct result of caring • Carers UK estimates that carers save the economy £87 billion per year • Carers Allowance at £53.10 is the lowest benefit of its kind and equivalent to £1.52 an hour.
Key national drivers Carers’ Recognition and Services Act (1995) - the Local Authority (LA) was given a duty to undertake assessments of all carers who are undertaking regular and substantial caring duties. The outcomes of this assessment were taken into account when making decisions about the services to be provided to the service user. The National Carers’ Strategy ‘Caring for Carers’ (1999) – was the first National Carers Strategy. It identified the vital role of carers and provided a focus for local and national policies. The Carers and Disabled Children Act (2000) - made changes to the law to offer new support to carers to help them maintain their own health and well being. It applies to carers aged 16 and over. The additional responsibilities and powers it introduced were : 1. LAs have the power to supply certain services (those which help the carer to care) direct to carers following assessment 2. carers have a right to an assessment independent of the assessment of the person they care for 3. LAs have the power to make direct payments to carers for services that meet their own assessed needs 4. LAs can run short term break voucher schemes 5. LAs have the power to charge carers for the services they receive. 4
The Carers (Equal Opportunities) Act (2004) - brought in three additional responsibilities: 1. LAs must inform carers that they maybe entitled to an assessment of their needs and suggests that LAs develop an information strategy to ensure carers are being told of their rights 2. carers assessments must include consideration of whether the carer works or wishes to work, or whether they wish to participate in any education, training or leisure activity 3. it requires other public authorities (eg education, housing or health) to give due consideration to any request from a local authority to assist in the planning of services for a carer. The Work and Families Act (2006) - extended the right to request flexible working to employees who care for adults. The 2006 White Paper Our Health, Our Care, Our Say - announced a New Deal for Carers made up of four constituent parts: • A comprehensive national information service • The establishment of Caring with Confidence, a training programme for carers • Emergency care cover • An updated Prime Minister’s Strategy for Carers. The Disability Discrimination Act(s) 1995, 2004, 2005 - recognises the right of people in society to equal citizenship, which will benefit both carers and the people that they care for and support. Aiming High for Disabled Children (2007) - The Aiming High for Disabled Children is a national programme of developments to be delivered within all local areas through partnership between the Local Authority and Primary Care Trusts. The focus of Aiming High for Disabled Children is to ensure that every disabled child can have the best possible start in life, and that they receive the support they and their families need to make equality of opportunity a reality, allowing each child to fulfil their potential. Parent Forums and 14 + Transition are a priority area identified within the agenda and funding has been allocated within each local area to support. Putting People First – December 2007 - This sets out the ambition to transform the adult social care system to achieve individual choice and control over service delivery. There are very significant implications for carers, including opportunities for services to be customised to the needs of carers as well as the people cared for.
The National Carers Strategy 2008 2008 saw the publication of the Government’s new national strategy for carers, as announced above: Carers at the Heart of 21st Century Families and Communities – “A Caring System on your side. A life of your own”. The new strategy replaces and extends the 1999 strategy ‘Caring for Carers’.
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The strategy outlines the Government’s 2008 – 2011 commitments to carers nationally: • Information and advice – a commitment to the provision of understandable and accessible information • New break provision – an additional £150 million nationally dedicated to carers breaks and new models of breaks • Expanded NHS services – pilots to improve NHS support to carers • Employment and skills – Up to £38 million to enable carers to combine caring with paid employment • Emotional support – Improved emotional support to carers across all sectors • Young carers – over £6 million dedicated nationally to support and protect young carers from inappropriate caring • Expert partners in care – Training to carers to strengthen them in their caring role • Workforce – Training to care professionals to provide better services and support carers • Third sector – Increased involvement within the third sector to support carers • Information about carers – Establishing a standard definition of carers and increasing data on carers. In addition the strategy outlines the Governments priorities for carers beyond 2011: • Services – accessible in every community • Personalisation agenda – Considering flexibility in the way personal budgets and direct payments can be used • Easy to access support – Support of a lead professional for carers • Income – A review of the benefits system • New break provision – New models of breaks for carers and an emphasis on quality and outcomes • Expended NHS services – for example: annual health checks for carers and training for GP’s • Young carers – Further protection for young carers • Expert partners in care – Work to establish legislative measures to ensure carers are given appropriate information to carry out their caring role • Information about carers – A review of the national indicator set • Annual carers grant – Examination of how best to utilise the Carers Grant to best benefit carers. The strategy summarises the national vision for carers, as shared by central and local government, the third sector and by carers themselves. The vision has five outcomes, as follows: By 2018: • carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role • carers will be able to have a life of their own alongside their caring role • carers will be supported so that they are not forced into financial hardship by their caring role • carers will be supported to stay mentally and physically well and treated with dignity • children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods and to achieve against all the Every Child Matters outcomes. 6
The local picture – where we are now Some facts and figures (The most current information about carers locally is taken from the Joint Strategic Needs Assessment and the Current Living in Kirklees survey 2008, Ipsos-MORI North). The current number of carers in Kirklees is estimated to be approx 40,000 - this represents one in eight of the adult population. In Kirklees we are aware that: • 69% of carers provide between one and 19 hours of care per week, 11% of carers provide between 20 and 49 hours per week and 20% provide 50 hours or more • Most often, carers in Kirklees look after someone with a physical disability (39%, of whom 57% are aged over 65) or who are frail or of older age, 19%. The majority of carers look after someone over the age of 65 • Some people care for more than one person, 14% care for two people, and 3% care for three people • One in three carers are aged 18-44, of whom 1/3 are men. One in two are aged 4564, of whom ½ are men. One in five are aged over 65, of whom 2/3 are men • We estimate that there are approximately 1,200 young carers (17 years and under) in Kirklees • 47% of carers are male, 51% are female • Carers reflect the ethnic diversity of Kirklees, with 87% being of white origin. Over half (57%) of carers of south asian origin are aged 18-44 • 46% of carers are employed • Carers are more likely than non-carers to: - be disabled - have suffered from health conditions in the previous 12 months, particularly pain problems such as arthritis - have poor physical health functioning - be obese and to be sedentary - report suffering from depression, anxiety and other nervous illness over the previous 12 months - feel their accommodation is unsuitable - have people of pensionable age living in their household. • Carers are less likely than non carers to: - rate their overall health as excellent or good - have reported positive mental health - be employed - live in a household with an income of over £30,000. • Interestingly, carers and non-carers reported similar personal health behaviours and isolation levels • There is no significant association between locality and being a carer. Mirfield has the highest proportion of carers (15% compared with 12% in Kirklees overall) • Benefits uptake in households with a carer is low. One in eight receive Carers Allowance • Over one in four receive Disability Living Allowance. Council Tax Benefit was claimed by one in five and Housing Benefit by one in seven • 2647 carers assessments were carried out during 2008 – 2009.
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Social care transformation – Putting People First While Kirklees Local Authority has an excellent tradition of providing services for carers, eligible carers have also been able to access a direct payment or vouchers in order to achieve some of their own outcomes since 2004. This places Kirklees Council in an excellent position to move forward in enabling support for carers which is much more ‘person-centred’, and includes the development and allocation of individual budgets for carers, including parent carers. This is required by Putting People First (2007) the Governments vision for the transformation of adult social care, and further supported by the Aiming High for Disabled Children Agenda. Kirklees Local Authority is committed to the ongoing review of the carers budget allocation to ensure that all carers can access essential support such as information and emergency support while eligible carers can also access a direct payment to meet their assessed needs and ensure positive outcomes.
Involving carers Locally, Kirklees Council and NHS Kirklees continue to recognise and value carers and to prioritise support for them. Carers are represented primarily through the local authority Carers Strategy Group (CSG) and Carers Network. Recently work has taken place around developing a new model for the Carers Network, this work continues. Some CSG members sit on the four Partnership Boards (Older People, Learning Disability, Mental Health and Physical Disability and Sensory Impairment and Long Term Conditions), ensuring that carers are represented within the commissioning process. Parent carers of children with special educational needs (which includes a range of physical, learning and sensory disabilities and behavioural conditions) can be part of the Kirklees Parent Consultation Group, facilitated by the Kirklees Parent Partnership Service. In 1997, Kirklees LA developed its own Carers Strategy. The most recent strategy document entitled ‘Supporting Carers, Developing the Vision’ (2003), was developed as a result of a visioning event held in October 2003. A similar event was held to inform this current document. This event aimed to: • • • •
Bring together a wide range of carers and professionals Find out what has been achieved since the Carers Vision Event Oct 2003 Decide what still needs to be done to support carers in Kirklees To develop a new Kirklees Carers Strategy in line with the findings of the day.
The valuable information gathered at the event has been used to inform this new vision and the strategy which sits alongside it, with updated information added as appropriate. The Kirklees Parent Consultation Group held a ‘Day for Parents’ in March 2009. The information gained and the recommendations made at that event reflect that of the consultation event.
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Additionally the National Carers Strategy 2008, Carers at the Heart of 21st - Century Families and Communities. “A Caring System on your side. A Life of Your Own”. has been central to the formation of the vision and strategy and is summarised in more detail above. The National Strategy was the result of extensive national consultation with carers and echoes many of our local priorities. The Kirklees Vision describes how Kirklees LA and NHS Kirklees would like all carers in Kirklees to experience their lives as carers while the Strategy states how this will be achieved.
Support and services for carers in Kirklees Currently carers in Kirklees have access to a range of support and services. The following is summary of some of the range. Carers Gateway Carers Personal Budgets Looking after Me Course Carers Advocacy Service Residential Respite Carers Activities Parent / Carer forums Parent Partnership Services
Carers Breaks Service Carers Emergency Support Service Action for Employment (ACE) Project Shared Lives (Adult Placement) Locality Based Support Groups Carers Week Activities Family Support Services Children with a Disability Unit
Some services are provided to specific groups of carers, such as: • • • • • •
Carers Breaks Service (mental health) Locality peer support groups ( BME, drugs and alcohol etc) Dementia Carer Support Service Telephone helpline (drugs and alcohol) ‘Changes’ training – SWYPFT (dementia) Carer’s Emergency Support Service for parent / carer’s of Children with a Disability Admiral Nurse Service (for carers of people with dementia).
Other services are currently under development such as: • • • •
Support for parents with a disability to protect children from inappropriate levels of caring Improved emotional support for carers, especially at key points such as when caring ends Aiming High for Disabled Children, Short Breaks developments Aiming High for Disabled Children, Transition developments.
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Issues, pressures and gaps National and local information policies and guidance along with local consultation with carers has told us that: • •
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The incidence of unpaid caring is forecast to rise dramatically; we must ensure that we continue to invest realistically to support carers We must ensure that information is available for all carers in many different formats and available through as many means as possible e.g. Department of Work and Pensions, leaflets, websites, GP’s surgeries, schools etc We need to ensure that all carers are being offered and positively encouraged to have a carers assessment, given the choice of having a joint or separate carers’ assessment and identify reasons why carers refuse an assessment. Carers should be supported to identify their own outcomes and be creatively supported to meet them Carers report poorer physical health and emotional wellbeing than the rest of the population. We must prioritise and support carers to maintain their physical health and emotional wellbeing through a variety of means such as improving breaks, Looking after Me courses, access to leisure services, enhanced support from GPs. GPs must be included in the identification of future gaps as they are a key first contact for many carers and are often involved in their ongoing support A high percentage of carers combine work and care which can cause stress and lead to carers giving up work. Moreover carers are less likely to be employed than non carers. We need to provide more flexible, creative support to people being cared for to enable carers to return/remain in employment and to support carers into education, training and employment Carers experience lower household incomes and benefit take up is low. We must ensure that carers assessments address these issues and all carers especially new carers are offered early benefits advice Whilst we have a range of good support services for carers in Kirklees, demand can outweigh supply and we are likely to see increasing pressure on resources Not all carers recognise themselves as a carer or are aware of the range of services available to support them. We need to do more to reach out to ‘hidden carers’ and to publicise services. However this will further increase pressure on resources There are growing numbers of ageing carers, particularly within learning disability services, who need additional support We need to be able to work closer with NHS partners to support carers Carers need to be considered in the changes that are taking place nationally to develop a more personalised range of support. This will include the development and allocation of individual budgets to carers of children with a disability Carers need to be considered in the changes taking place in relation to Short Breaks and 14+ transitions development We need to ensure that we take account of the issues and priorities highlighted in the new National Carers Strategy.
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Safeguarding The Kirklees Safeguarding Board Multi-Agency Policy lays down the Governing Principles of safeguarding work including: • the rights of vulnerable adults to be treated with dignity • the right to be able to exercise choice, • the right to be listened to and be taken seriously • to be confident that any allegations are acted upon. While the Safeguarding Adults 2005 - National Framework of Standards (ADASS) states that LAs should ensure that: • •
All citizens can access information about how to gain safety from abuse and violence, including information about the local safeguarding procedures The multi-agency safeguarding partnership explicitly includes service users as key partners in all aspects of the work.
Kirklees Council Well-being and Communities received a significant number of referrals under safeguarding procedures during 2008/2009 from relatives of vulnerable adults thus recognising the crucial role of carers in keeping vulnerable adults safe. However we also recognise the wider implications of safeguarding vulnerable adults work on carers as follows; • • • •
carers must be able to understand what constitutes abuse and identify the signs of abuse carers must know how to report suspicions of abuse promptly and confidently carers must be supported practically, physically and emotionally to avoid unnecessarily breakdown in the caring relationship some carers are vulnerable adults themselves.
Below are summaries of the workshop findings of the Carers Vision Events. 11
Access, assessment and information workshop Background • The National Strategy for Carers states that good information is one of the main needs of carers • Providing good information at the right time in the right way is a challenge. • Recent consultation by Carers UK highlighted that ‘carers want to be in the know’ and stated that information about services acted as a gateway to vital support, particularly for new carers. Help to navigate the health and social care system was also highlighted as essential • Assessment is a word that can be misleading as it is often associated with a test. Examples of progress highlighted in the consultation event includes: • Developed and delivered Carer Awareness training • Developed Carers Assessments and Carers Assessment training • Increased awareness raising, publicity and information. Summary of the key issues highlighted at the event • Lack of access, support and information from GP’s eg. GP’s failing to identify carers, failure to sign post carers on, lack of information in GP surgeries, not offering carers regular health checks • Carers do not always have access to 24 hour support – particularly in a crisis • The need for continual expansion and improvement of information, and location of information, for carers, eg. more ‘summaries’ of information that have a single point of contact, more information about what’s available to support carers to have a life outside of caring and more information located in libraries, supermarkets and other places where carers go.
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Having a life outside of caring workshop Background • Carers feel isolated and lose contact with friends and relatives • The loss of spontaneity can limit a carers everyday life and for many, going out involves a great deal of planning • Recent consultation by Carers UK highlighted that ‘carers want a life outside of caring’ – Lack of a social life saw some carers at breaking point • A break from caring reduces the psychological and emotional stress faced by many carers and aids health and well being • Opportunities for a break rate amongst carers highest priorities. Examples of progress highlighted in the consultation event includes: • Well-being and Communities eg. Development of the Carers Support Service, successful implementation of the Carers (Equal Opportunities) Act 2004, Carers Assessment training including importance of assessors supporting carers to have a break, increased numbers and more focussed carer breaks eg via community grants, Carers Gateway, BME carers • Leisure Services eg. Training to staff to assist disabled people in the pool, refurbishment and additional equipment, joint working between Kirklees Council and Kirklees Active Leisure to increase sustainable opportunities for carers to access leisure activities • Libraries eg. Carers reading group at Priestley unit, registration of carer status at libraries for consultation purposes, promotion of Carers Week in libraries, RAY scheme at Carers Gateway, books renewed by phone, home delivery service. Summary of the key issues highlighted at the event • The prices and times of leisure activities are still prohibitive • Lack of transport, adequate parking and support from different services prevents carers from enjoying leisure activities with the person they care for • Loneliness and isolation of some carers prevents them from having a break as they have nobody to go out with • Carers, who feel guilty about leaving the person they care for in respite, need more support to enjoy time outside the caring role.
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Health and support in daily living workshop Background • The impact of caring can be detrimental to the health of a carer. • The National Carers Strategy states that carers have a right to their health needs met and have access to support services. • Older carers face their own health deteriorating • Health staff have a key role to play in helping carers to access support • Carers say that they feel best supported where services are high quality flexible and give the cared for person good quality of life. • Carers want continuity of staff who are competent and sensitive. Examples of progress highlighted in the consultation event includes: • The carers advocacy service has been commissioned • The Carers Support Service provides practical support eg. cleaning, • Carer Awareness training has been ongoing since Jan 2004 • A Carers Emergency Support Service is being developed. • There is an ongoing programme of the Looking after Me Course. Summary of the key issues highlighted at the event • Carers do not understand GP contracts • Carers are concerned by lack of continuity eg. key workers and closure of cases • There is a lack of reliable, effective day time activities/services eg. to support working carers • Carers are confused about hospital discharge eg. quality standards, levels of information, training and support should they receive when the person they care for gets discharged.
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Employment, training and money Background • One in eight Kirklees carers combine work and caring, combining work and caring causes stress, six out of 10 people give up work to care • Many Carers want to work in order to feel a part of society and to make a contribution - 80% of carers say they would return to work if they could • Recent consultation by Carers UK highlighted ‘Income’ as one of carers top priorities for carers and stated that Carers want ‘a decent income’, ‘a flexible benefits system’ and ‘the right to work’ • Approx £740 million of benefits go unclaimed each yr • The benefits system is complex and can be a barrier to carers going back to work/education • Carers sometimes get unhelpful information e.g. 'It wont pay you to work' • The costs of caring can be considerable and is sometimes unrecognised e.g. having to use local shops • Not only can there be poverty whilst the person is caring but when the caring stops, they can find themselves with even more financial problems when they find their experience and training is out of date. Examples of progress highlighted in the consultation event includes: • Action for Carers and Employment (ACE) at Carers Gateway • Issues around employment/training considered in carers assessments • The carers advocacy service has been commissioned • Revenues and Benefits eg. Awareness Days and outreach, involvement during Carers Week etc, publicity, co-working with other services to assist benefit forms completion, member of CSG, home visits, plain English. Summary of the key issues highlighted at the event • Carers want support to meet their aspirations and access job and training opportunities • Most employers are not ‘carer friendly’ • People new to the caring role do not always receive early benefits advice • Carers want easier access to legal advice.
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Transport and housing Background • Housing that is warm, safe, secure and manageable is an important ingredient to enhancing a persons quality of life Unsuitable housing can be ‘disabling’ and exacerbates the difficulties faced by carers and the people they care for • Problems with housing relate not only to the accessibility of the home but issues with space, house condition and unsuitable location can be equally important • Recent consultation by Carers UK highlighted transport services as a problem for carers, with many having to pay expensive taxi costs out of their own pocket to get the person they care for to and from hospital because public transport was insufficiently flexible or disability friendly • Having to rely on public transport brings enormous stress to a carer who has left the person they care for alone and lack of transportation means that many carers are forced to use local shops, which in turn has an impact on their finances. Examples of progress highlighted in the consultation event includes: Housing and adaptations: • Review of adaptations process undertaken Transport: • By 2012 all buses will be 'low floor accessible' and have an area for a wheelchair user and space for carer • Access Bus and Metro Local services are fully accessible public transport services available to all. Summary of the key issues highlighted at the event • Carers still do not feel involved or know enough about the adaptations process eg. how the process works, timescales and what is available (particularly when they are preparing for the person they care for to leave hospital) • Lack of transport facilities leads to social isolation and lost opportunity to learn social skills - Carers experience problems with the Access Bus - No room, need to book at least two weeks in advance, inflexible route. Also poor bus services in rural areas • Car parking at hospitals is inconsistent and poor. There are real problems – for example at Calderdale hospital Blue Badge holders have to go to reception to get their ticket authorised • Carers experience problems regarding transport for the person they care for – where it is available it can come anytime within a two hour time slot so carers are always “clock watching” / anxious and where it is not available carers have to transport the people they care for to activities otherwise they would not be able to attend, both leaving little or no break for the carer 16
Equality and involvement Background • The 2001 census tells us: - 40,000 carers in Kirklees - 58% female and 42% male - 12% of carers are non white compared with 14% of the population who are BME - 3% (1,200) are young carers (17 years and under), 16% (6,400) are aged 65 and over - 3.4% of carers between the ages of 16-74 are permanently sick or disabled • The number of enquiries to Well-being and Communities, from non white carers is increasing . . . • Carers UK recently calculated the value of carers’ contribution to the economy at a staggering £87 billion a year (£3,000 a year to every UK tax payer) • The National Carers Strategy states that service providers must see carers as partners in the provision of help to the person needing care, and must involve them as partners… • Recent consultation by Carers UK highlighted ‘Better recognition from professionals and inclusion in society’ as one of the top priorities for carers - Carers described feeling ‘looked down on’ and ‘kept in the dark’ and said that health and social care professionals often behaved as if they were ‘invisible’ Examples of progress highlighted in the consultation event includes: • Improved ‘inclusive’ consultation - that ensures people from a wide age range and from different cultures, race etc are involved – promoted via WIP’s ‘Good practice Guide’ • A wider variety of effective communication methods are used to consult/involve e.g. Braille, sign language, face to face, telephone interviews, focus groups, questionnaires • Increased Cultural diversity awareness raising / training – Internally for new starters, supervisions, plus on-line exercise and shared with partners and agencies we work with. • Developed an advocacy service for carers • Increased pro-active consultation – where services go to carers to involve/consult and not wait for carers to come to them – including outreach work with new and existing groups, invites to other organisations and partners events • Development of carers network to ensure all carers can be involved not just those who can attend a meeting • Getting better at identifying and addressing barriers to involvement – including use of interpreters and care cover • It is an aim of Kirklees Council to have a workforce which reflects the rich culture and diversity of citizens which live in the area 17
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Increased usage of: Public Information Panel (Service managers – who make sure information is produced in clear and easy to read formats and is appropriate to the target group of readers). Readers Panel and Asian Readers Panel – who check information is produced to a high standard and is accessible to all people who need it. Web focus groups – Service users and carers test out our information on the website to make sure it is easy to download and is appropriate to their social care needs
Summary of the key issues highlighted at the event • Consultations and events do not follow the same procedure regarding support for carers e.g. care cover, childcare and transport • Carers feel that they are not always treated as equal partners regarding the development of new services • A diversity of carers views are not always represented at events / meetings e.g. young carers and BME carers • Carers want more feedback on what developments have taken place as a result of consultation
Kirklees vision for carers – where we want to be The vision for carers in Kirklees is:
Carers to be equal citizens, to have a life outside of their caring role, be recognised and respected as expert partners in care and receive appropriate support to enable them to stay mentally and physically well.
To achieve our vision we have identified the following priorities.
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Information about carers and understanding caring A clear definition of the term ‘carer’ which can be understood by all citizens. Awareness raising to help people identify themselves as carers A diverse range of carers fully involved during consultation processes Carers’ status clearly identified on GP records and support offered accordingly
Choice and control The ‘transformation of adult social care’ fully extended to all carers Eligible carers encouraged and supported to access direct payments Carers experiencing choice and control
The workforce Carers recognised, respected, understood and supported as ‘expert care partners’ not only by staff within Kirklees Adult and Childrens Services but also NHS Kirklees and other partner organisations Recognition - expert partners in care Carers recognised and respected as ‘expert partners in care’, fully involved and informed in any decisions regarding the cared for person which impacts on their caring role. Carers fully involved and consulted on the future development of carers services Carers fully recognised and involved in safeguarding work
Access, assessment and information Carers able to ‘care with confidence’ with easily accessible, clear information and advice on - support and services for carers and the cared for person - specific illnesses and conditions Information, advice and signposting available at GP surgeries and other NHS points Carers assessment easily accessible and clearly clarifying what is on offer to them. Carers fully involved and informed during assessment of the cared for person, including the hospital discharge process
Caring in Kirklees A caring system on our side A life of our own
Access, assessment and information
Information about carers
A life outside caring
Choice and Control
Health and wellbeing
Recognition expert partners in care
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Finance, employment & skills
Workforce
Young carers Young carers protected from inappropriate levels of caring and having the support they need to learn, develop, thrive, enjoy positive childhoods, achieve and care.
Support in daily living Young Carers
A life outside caring Carers benefiting from flexible, responsive, reliable and tailored services both for themselves and the cared for person Carers being able to access practical support Carers being able to access 24 hour/emergency support Carers encouraged and supported to have a life outside of caring All carers being able to participate in local health and social care activities provided by rd the 3 sector
Health and wellbeing Carers supported to maintain their health and wellbeing by a variety of methods eg. GPs, breaks, moving and handling training and equipment, adaptations, the Looking after Me course, holistic therapies, local health and social care activities provided by the 3rd sector etc
Finance, employment and skills Carers accessing support into training, volunteering and employment Carers, especially new carers, receiving early and ongoing benefits and financial advice, Carers experiencing ‘carer friendly’ employers who support them in their rights as carers
Support in daily living Direct payments available to carers to flexibly meet their outcomes Carers central to the development of social care across all agencies including employment, housing, leisure, transport and health.
In order to make this vision for carers a reality, the following have been prioritised for action. These priorities will be reviewed and updated annually in full consultation with the Carers Network and Carers Strategy Group.
1
2
Information about carers – understanding carers
Recognition – expert partners in care
Kirklees Carers Strategy 2010 to 2015 1.1 Review the Carers Strategy Group Core Membership to ensure a diverse range of carers are represented both on the CSG and the Partnership Boards
Well-being and Communities
1.2 Ensure a clear well publicised definition of the term ‘carer’ which can be understood by all citizens to enable them to identify themselves as such.
Well-being and Communities/NHS Kirklees/ChYPS
2.1 Review the Carers Network arrangements to ensure that a wide and diverse range of carers can meet and are central to all decisions made about carers
Well-being and Communities/ChYPS
2.2 Ensure that carers are integrated into the work of the multi-agency safeguarding partnership’
Well-being and Communities
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3
Access, assessment and information
3.1 Review systems to ensure that carers are identified by GPs and that information for carers via GP surgeries is easily accessible, clear and comprehensive and that signposting happens 3. 2 Review the Carers Assessment process in line with the personalisation agenda, ensuring that carers have a clear understanding of what their ‘offer’ includes. The Aiming High for Disabled Children Core offer presents an expectation of all services for disabled, children, young people and their families
Well-being and Communities/NHS Kirklees Well-being and Communities/ChYPS
3. 3 Review the Carers Assessment Training and ensure adequate delivery to ensure that assessors prioritise carers’ assessments and enable positive outcomes
Well-being and Communities/ChYPS
3.4 Work with partners to ensure that carers are central to hospital discharge procedures by evaluating discharge policies
Well-being and Communities /NHS Kirklees
3.5 Develop the information available to all carers, including carers of disabled children
3.6 In addition to the Carers Emergency Support Service, develop other ways to provide crisis support eg helpline 3.7 Ensure that information about safeguarding is readily available to carers
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Well-being and Communities
Well-being and Communities Well-being and Communities
4
A life outside of caring
4.1 Ensure that carers needs are considered in the design of new services and support for the cared for person
Well-being and Communities/NHS/ChYPS
4.2 Work with partners to minimise barriers to carers enjoying leisure facilities eg. cost, access, parking
Well-being and Communities / Leisure Services
4.3 Work with Community Liaison to encourage/enable carers to access local support groups provided by the 3rd sector 4.4 Enhance support for carers of people with dementia, especially early onset dementia 5
Health and wellbeing
5.1 Enhance links with NHS partners to increase joint working on carers issues eg. identification and support via GPs, annual health checks, condition specific Looking after Me courses, care in the home to children with complex medical needs 5.2 Work with Community Liaison to encourage/enable carers to access local health and social care activities provided by the 3rd sector
6
Support in daily living
Well-being and Communities Well-being and Communities Well-being and Communities/NHS/ChYPS Well-being and Communities
6.1 Review the Carers Budget to ensure that carers can access practical support in ways that meet their needs.
Well-being and Communities
6.2 Ensure that other partners/agencies are represented on the Carers Strategy Group giving the message that ‘carers are everyone’s business’ and their needs are represented across all social care sectors
Well-being and Communities
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7
Finance, employment and skills
7.1 Work with partners to ensure that carers, especially working carers’ needs are considered during consultation and the design of new services
Well-being and Communities
7.2 Work with partners to ensure that carers get early benefits advice
Well-being and Communities/ Benefits Agencies Well-being and Communities/Job Centre Plus
7.3 Work with Job Centre Plus Partners to develop new ways and continue existing ways to support carers into education, training and employment
8
Choice and control
7.4 Work with Kirklees Council Working Carers Network to develop a Working Carers Good Practice Guide to share with other Kirklees Employers
Well-being and Communities/Job Centre Plus, Kirklees WCsN
8.1 Ensure that the ‘Transformation of Adult Social Care’ agenda and ‘Aiming High for Disabled Children’ agendas are fully extended to carers
Well-being and Communities/ChYPS
8.2 Invest in Carers Personal Budgets to ensure their sustainability and to enable carers to access a personal budget to meet their identified outcomes 8.3 Introduce agreements for internal services and improve monitoring systems to ensure that services are delivering what carers (CSG) want and need, have prioritised and agreed 9
Young carers
9.1 Improve support for disabled parents and parent carer’s of children with a disability to ensure children do not take on inappropriate caring responsibilities
Well-being and Communities/ChYPS Well-being and Communities/ChYPS Well-being and Communities/ChYPS
9.2 Gain a better understanding of the incidence of young carers 10 The workforce
10.1 Review Carer Awareness training for in house staff and make it available to external providers
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Well-being and Communities/NHS Kirklees
Current Service Model 2009 Carers’ Gateway (Carers’ Centre) offers information, advice, signposting, support, training, activities. Range of short breaks - residential and nursing home placements, adult placement, day service, home/community based ‘carers break service’. Includes ‘end of life’ and specific mental health provision. Carers’ Support Service – Direct Payments and Vouchers Carers’ Employment Service (ACE) Carers’ ‘Looking after Me’ courses Range of locality based/condition specific ‘support groups’ Carers’ Advocacy Carers’ Emergency Support Service (in development) DPs for disabled parents to reduce the impact of caring on children (in development) A wide range of voluntary sector services available Carers’ Assessments routinely offered. Carers involved in service planning through Carers’ Strategy Group.
April 2010
Desired Service Model 2015:
Planning for services for carers Commissioning / Service Activity
Review the Kirklees Vision for Carers and the Kirklees Carers’ Strategy with partners and carers. Ensure the ‘Transformation Process’ is fully extended to carers.
Review the Carers Support Service and the Carers Budget to ensure personalised support is available to carers. Introduce agreements for internal services and improve monitoring systems to ensure that services are delivering what carers (CSG) want and need, have prioritised and agreed.
Enhance links with NHS partners to ensure increased joint working. Develop and launch DPs for disabled parents to reduce the impact of caring on children Develop and launch the Carers Emergency Support Service.
Develop and launch improved support to carers of people with dementia.
April 2011
April 2012 24
All carers will receive a Carers Assessment if they want one There will be a ‘Carers Pathway’ and a personalised ‘Carers Offer’ will be available to carers Carers’ Gateway will continue to deliver dedicated carers access, information, support and training There will be increased use of Carers Personal Budgets There will be wider options for short breaks Specialist end of life home support service will continue. All carers who want one will have an emergency plan to support them in times of emergency/crisis. Carers’ Advocacy will be routinely offered. The Carers’ Employment Service (ACE) will continue to support carers back into training/ employment. There will be improved support for carers of people with sensory impairments and dementia The Looking after Me Programme will be offered to all carers. There will be improved support for disabled parents to reduce impact of caring on children (DPs) There will be a wide range of locality support groups A diverse range of carers will be consulted on planning carers services
April 2015
Over to you… “I care for my wife who has severe arthritis, rheumatism and alzheimer’s. I found it hard to accept my wife’s change in health and the change in our relationship. I was losing weight, having panic attacks and becoming agoraphobic. Then I attended a ‘Looking after Me’ course and things changed. I didn’t think the course could help me. But it has helped me; it has helped me to get help. I picked up lots of tips, not only from the course but from the other carers who were there too. I’m eating more fruit and vegetables and trying to eat breakfast every day. I’m also going to see my health trainer - I’m not cured yet but I’m getting help, to help myself. I wouldn’t have learnt all of this if I hadn’t of attended the Looking after Me Course. I hope others get the help too”
“My son became mentally ill when he was sixteen, he is now 41. It has not been easy especially when he goes into crisis. I dealt with this on my own for years but in the last six years other help has been gratefully appreciated. I joined Carers Gateway a few years ago which really helped me. I joined their ACE scheme and through a carers assessment they helped me enrol on to the Learning for Living course and Looking after Me course and they put me in touch with Making Space and Carers Cloverleaf Advocacy which helped me immensely.“
“I care for my wife who has had a heart bypass, suffers with angina, and has osteoporosis in her spine resulting in very poor mobility meaning she is house based and only goes out when totally necessary. I also have angina, high blood pressure, high cholesterol, glaucoma and cataracts on my eyes. After contacting Carers Gateway and an assessment, we have gardening and domestic help, adaptations and a benefits check”
“I was a carer for my wife for a number of years. I was put in touch with Carers Gateway to see if there was any help they could give to alleviate my caring role and to see if there were any possibilities of helping me to return to employment to give me a break from my caring role and give me back some self respect. Carers Gateway staff helped me with interview techniques, job applications and put forward an application to the Carers Support Fund for funding towards fork lift truck driving courses as this was what I did before becoming a full time carer. I have successfully completed my course and was successful in finding full time employment.”
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Information in other formats We are committed to ensuring that our communication is clear, plain and available for everyone. This information can be made available in languages other than English. It can also be made available in large print, audio CD, audiotape and Braille. Full details are available by telephoning 01484 22 52 74.
Useful telephone numbers Phone Gateway to care on 01484 223000 Carers can contact Kirklees Council Carers Gateway on 01484 226050 In an emergency outside office hours only, please telephone 01484 226050
April 2010, PIP ref is Ca4101