Shine Five Year Plan

Shine Forward Our plans for the next five years These are the plans formulated by Shine for the years 2011-2016. The priorities and issues outlined in this plan will form the basis of detailed planning by Directors, Managers and staff responsible for delivering the work.

Our Background Shine (formerly the Association for Spina Bifida and Hydrocephalus) is a charity with a rich history, encompassing the unique struggles and achievements of people with spina bifida and hydrocephalus, and the professionals, families and carers who have strived to make a difference.

Since 1966 it has brought together this community of people and funded research and supported campaigns that have led to better medical care and a greater understanding of these serious and lifelong disabilities.

During this time there have been groundbreaking discoveries and developments – the proof that folic acid deficiency can lead to neural tube defects, for example, and revolutionary new technology which has led to products which have made day to day life so much more manageable for thousands of people.

Shine has worked across England, Wales and Northern Ireland, and in close partnership with colleagues in Scotland, Eire, Europe and the USA to raise the profile of spina bifida and hydrocephalus and further the life chances of those affected by these disabilities both in the UK and throughout the developing world.

When Shine (as ASBAH) was first formed, as a national organisation, it was to support and co-ordinate the activities of around 70 local associations for spina bifida and hydrocephalus. These groups were themselves formed by clusters of parents and carers who felt isolated as they supported children and families with spina bifida and/or hydrocephalus, and wanted to create a more formal network of peer contact and support.

More recently the number of these local associations has reduced dramatically meaning that support at local level across the country is very varied. A few areas have large thriving associations, well funded and able to provide a range of services, whilst in large areas of the country there is nothing at all and individuals and families are increasingly looking to Shine for support and activity at local level.

Shine’s constitution still reflects this combination of local support through local associations and national activity designed to support this work.

However, the day to day reality is that Shine works increasingly as a national body relating directly to its members in localities where no other support is available. Patterns of work, and demand from its members, suggest that Shine will be increasing direct work at local level and it will therefore be necessary to review its constitution and make up to ensure that it’s current role is accurately reflected in its governing structures.

Shine has remained a very traditional charity for the majority of the past two decades when there has been rapid development in the third sector. The adoption of IT and contemporary management, fundraising and social networking practices has lagged behind many other national charities and the organisation has suffered as a result, both in its ability to project a vibrant, compelling message and in its income generating potential.

During the period of this strategic plan it faces a significant challenge in developing its infrastructure and outward image to match the importance of its cause and the demands and aspirations of the community it serves.

In this sense Shine must regard itself as embarking on an exciting new beginning. Whilst valuing its history and crediting those within that history who have achieved and given so much, it must also now look to a very different future – a future in which the equality and empowerment of individuals with spina bifida and hydrocephalus must feature as prominently as addressing the medical conditions they were born with, or acquired during life. Shine must look to a future, which acknowledges that a charity is a business in a competitive market, where income generation has to go hand in hand with service delivery, and where image, in a marketing sense, can be the difference between success and failure.

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Our environment The environment in which Shine operates today is complex, competitive and changing. The disability that triggered the founding of local and national associations, spina bifida, is decreasing with only around 100 babies being born per year. However, the incidence of hydrocephalus occurring on its own is increasing with around 1 in 1000 babies being born with congenital hydrocephalus. This in itself changes the demand from the external environment in which Shine operates.

The disability agenda is changing with great strides having been made in improved attitudes towards disabled children and adults. Disability organisations are increasingly handing over direction and responsibility to people who themselves have the disability and all must adopt a collective responsibility to moving forward the Disability 2025 agenda.

Our environment is changing too with huge shifts in health and social care.

There is more emphasis on wellness and preventative health and less on intervention and ‘treatment’. Individuals are being encouraged in both health and social care to take more responsibility for their own lives, their own support and their own healthcare. Shine needs to respond to these changes and help support individuals to understand the implications of new developments, both by supporting their rights and by helping them to overcome the barriers to health and fitness posed by the nature of the disabilities themselves.

Our economic environment is challenging, both for the organisation in controlling its own finances and for the individuals and families we support.

This plan must balance its ambitions with the harsh financial realities and uncertainties of the continuing credit crunch.

Finally, as an organisation occupying a place in society and employing around 100 people, many of whom travel widely, Shine has a duty to ensure that it plays its part in protecting the physical environment in which it operates, adopting greener methods of operating and endeavouring to reduce its overall carbon footprint.

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Our vision These then are the contexts in which we are operating in 2011 as we embark on a new five-year strategy for Shine. Our existing vision ‘A society in which people with spina bifida and/or hydrocephalus can get the best out of life’ remains no less relevant today than in 1966.

However, there is an argument for a refreshed statement of our vision to support the concept of a new beginning for the organisation and a slightly more focused statement of intent.

We have therefore adopted the following as Shine’s vision going forward: A society that meets the needs, values the contribution and celebrates the lives of people living with spina bifida and hydrocephalus.

This vision is more active and makes a bolder statement about the potential contribution to their communities of people with sb/h.

Our Values Any organisation is ultimately defined by its values whether these are made explicit or not. Shine believes it should make its values clear and public and that all those who represent the organisation are committed to and remain grounded in these values. They form goals for staff to aspire to and provide a basis for challenge and review in all areas of work.

The following six values were drawn from an extended consultation with members, trustees, the Shine Adult Members Council and regional and headquarters staff groups. As a result of this we have resolved that we will: • Challenge the ways in which society disables our members • Promote the empowerment and participation of people with spina bifida and hydrocephalus • Value and respect all the different people with whom we work • Work to achieve excellence • Welcome challenge and review • Use resources ethically, thoughtfully and responsibly

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Priorities and Objectives for the years 2011-2016 We have identified five over-arching objectives for the work of the charity over the next five years culminating in the celebration of its 50th anniversary year.

Collectively the achievement of these objectives will achieve the following outcome in 2016: An organisation focused on the needs of a highly involved membership, which meets those needs effectively, efficiently and creatively Objective 1 We will develop a larger, more interactive, more involved national membership of people with spina bifida and hydrocephalus, their families and supporters What we will do: • Our membership will grow to at least 12,000 by 2016 • We will actively listen to and communicate with our membership through regular mailings, websites, social media, representative groups, regional contacts and events • Our membership will be seen to inform and direct our work • We will communicate appropriately with each section of our membership, including children, young people, adults, families, professionals and supporters • Our disabled members and parents will be prominent in representing the organisation in all aspects of its work • We will work to employ more people with spina bifida and hydrocephalus in the delivery of our work • The Adult Members Council will become fully representative of the disabled membership allowing full expression of its needs, concerns and aspirations Objective 2 We will become a force for change to address the many challenging issues that our members face What we will do: HEALTH 5

• We will conduct a major health survey designed to record and demonstrate the health challenges and inequalities our members face and we will publish a report based on this • We will campaign for a means of annual checking and holistic health care for people with spina bifida and/or hydrocephalus • We will address the unacceptable challenges faced by many of our members in accessing appropriate continence support and services • We will address the unacceptable challenges faced by many of our members in accessing adequate mobility support, especially wheelchair services • We will assess the extent of mental health issues amongst our members and, if necessary, develop services and projects to address this • We will develop resources and support to improve skin health in order to reduce skin breakdown • We will work with the Fetal Anomaly Screening Programme and others to monitor and improve the information and support given to parents whose unborn child is diagnosed with spina bifida and/or hydrocephalus • We will work to improve awareness of the problems and challenges which face those with shunts • We will develop a major project which examines the implications of ageing with spina bifida and/or hydrocephalus • We will further address the needs of those with adult-onset hydrocephalus and Intercranial Hypertension • Through the Go Folic! campaign we will continue to promote the uptake of folic acid by women of child bearing age in order to reduce the incidence of neural tube defects EDUCATION • We will challenge the discrimination and unfair treatment that children, young people and adults with spina bifida and hydrocephalus experience in education • We will work to raise awareness of hydrocephalus in children which remains a ‘hidden’ disability EMPLOYMENT • We will survey the employment status of our disabled adult membership and develop appropriate support and initiatives based on the results 6

LIVING INDEPENDENTLY • We will monitor and respond to changes to housing provision to disabled people which may threaten the independence and welfare of our members FINANCIAL SUPPORT AND BENEFITS • We will monitor and respond to changes in the benefits system to protect the welfare and rights of our members • We will support our members to manage their own health and social care in a complex and changing environment CARERS • We will highlight the needs of informal carers of all ages and work to build a more accurate picture of their needs in the context of caring for people with spina bifida and hydrocephalus

Objective 3 We will provide unique, high quality services What we will do: • We will redevelop our range of unique information materials to make them more attractive, relevant and accessible to all • We will provide a welcoming, informative and responsive first-point-ofcontact for all enquiries and requests relating to spina bifida and/or hydrocephalus • We will provide both reactive and proactive support for the community of people affected by spina bifida and hydrocephalus through the provision of professional regional and national staff • We will provide a free health advisory service to our members • We will provide a free education advisory service to our members • We will support, inform and train statutory and voluntary organisations, and potential employers, on how best to enable our members to contribute to the workplace/their communities • We will advise and signpost our members to organisations that can support them in finding suitable employment 7

• We will produce materials and programmes which help our adult members to develop the skills to live independently • We will develop awareness and training programmes based on the expertise of our staff • We will assess demand among our members for specialist counselling and develop appropriate responses if necessary • We will develop a strategy for increasing the role of volunteers within the organisation • We will develop a national network of at least 50 social groups where members can access social support, activities • We will support the work of existing local associations and groups supporting people with spina bifida and hydrocephalus enabling them to develop new structures where appropriate • We will develop our Lifelong Opportunities Programme to offer a range of events and learning opportunities for our wider membership • We will work proactively and co-operatively with other agencies in the interests of our members • We will review our strategy in funding and supporting research in order to renew focus and ensure supported research is consistent with the objectives in this plan Objective 4 We will put communication at the heart of all we do What we will do: • We will develop a new name, image and brand for the charity to better explain and promote the disabilities we work with and the work that we deliver • We will ensure that the rich history of the organisation and the lives and achievements of individuals with spina bifida and hydrocephalus and their families is captured for posterity • We will engage with all available social media, website interaction, digital media to reach the largest possible contemporary audience • We will proactively communicate about our work to relevant health professionals and bodies • We will ensure our communications are accessible to all • We will use our physical resources (office buildings, shops, publications) to explain and promote what we do • We will communicate often and comprehensively with our staff

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• We will endeavour to achieve on-going regular communication with all our members • We will work to widen our networks and develop partnerships with others • We will develop a range of media contacts networks and methods of engagement in order to educate and enthuse media professionals • We will train staff to communicate more effectively with a range of audiences, including the media • We will use the written word, visual images (photography, film, art) tactile media the spoken word, produced or delivered by our members and others, to get our messages heard and our issues understood Objective 5 We will, through on-going development and review of our operations, become an organisation that is exceptionally fit-for-purpose What we will do: • We will develop a new constitution that properly reflects the role of the organisation in 2011-2016 • We will conduct a Governance review • We will seek to develop a broad ‘family’ of Patrons and supporters to support our cause and the delivery of our work • We will develop a long-term financial strategy that reflects the necessary growth whilst maintaining organisational stability • We will develop a broad base of outcome-focused fundraising methods seeking to engage funders responsibly, innovatively and creatively • We will develop excellence in the use of our Human Resources, ensuring that Shine is a forward looking employer of choice • We will ensure that up-to-date IT is used effectively in supporting our operations • We will at all times endeavour to achieve quality administration and efficiency • We will ensure our buildings and physical resources are designed and used for the maximum benefit of our membership • We will ensure that our operations in Wales and Northern Ireland take account of the national and cultural differences which affect our work and that due autonomy is built into the way in which we operate

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• We will conduct a ‘green’ audit of our operations and resources, and based on this develop plans to reduce our negative impact upon the environment • We will develop our financial processes and systems to ensure that we provide an effective service to our internal and external customers, whilst maintaining appropriate controls • We will ensure that quality monitoring and reporting systems enable us to measure and demonstrate the impact of what we do on behalf of our members and wider stakeholders

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