“INDEPENDENCE, WELL BEING AND CHOICE” The Government’s Vision for the future of Social Care for adults in England RESPONSE BY THOMAS POCKLINGTON TRUST 1 INTRODUCTION Thomas Pocklington Trust (Pocklington) is Britain’s largest provider of housing, care and support services for people with sight loss. Part of Pocklington’s mission is to offer a range of extra-care sheltered housing, residential care, respite care, day services and home care services, together with community based support services, which provide choice and independence. In addition to providing these services (often in partnership with others) Pocklington also funds a research and development programme on the prevention, alleviation and cure of visual impairment, amounting to around £300,000 per year. The research programme aims to identify practical ways in which the lives of people with sight loss can be improved, and focuses on three themes which resonate with the philosophy underpinning the Green Paper: 2 Improving social inclusion, independence and quality of life. Improving and developing service outcome. Public health issues, including prevention of blindness, and promotion of eye health. THE IMPORTANCE OF SIGHT LOSS Current estimates indicate that there are around 1.7 million adults in the UK with some form of sight loss that disrupts their day-to-day lives. Around 1 in 8 people over 75 years of age and 1 in 3 of people over 90 years in the UK have serious sight loss, according to the most recent peer-reviewed study 1 funded by Pocklington. Recognising that there will be a 25% increase in the over 85s by 2011, sight loss is a very significant factor in later life, and a growing issue. Much of this loss arises from correctable impairment, 2 and a short literature search 3 commissioned by Pocklington from King’s College, London challenged the view that sight loss was an automatic consequence of ageing. The late onset of visual impairment has significant emotional consequences including anxiety, depression and profound loss generally. 4 D:\533582735.doc 1 The experience of sight loss is accompanied by many other “losses”. These losses include: education and employment opportunities, reduced mobility, a need for readjustment, problems with communication and loss of friends and social contacts. 5 3 THE VISION AND VALUES OF THE GREEN PAPER Thomas Pocklington Trust warmly welcomes the vision and principles which are at the heart of the Green Paper. In particular: the opportunity for people to have more control and more choice. the chance to do things that other people take for granted and to have better access to universal services. the focus on outcomes for service users, rather than simply on levels of activity. the emphasis on joint working between Central Government, Local Authorities, the NHS, and partnerships with the voluntary, independent and private sectors. extra care sheltered housing becoming the preferred alternative to residential care the greater focus on preventive services through better-targeted early interventions which are aimed at preventing or deferring the need for more costly, intensive support. 4 POCKLINGTON RESEARCH 4.1 In 2002, Britain’s largest ever research project of the housing, care and support needs of older people with sight loss was completed in a major study undertaken for Pocklington by University College, London and the University of Bristol. 4 The result was an extensive analysis of visually impaired people’s needs and circumstances. Major findings of this study of 400 visually impaired people over the age of 55 years included: The late onset of visual impairment has significant emotional consequences which included anxiety, depression and profound loss. There was little professional recognition of this, or offers of help or advice. Needs which were unmet included timely and holistic care management assessment, rehabilitation services and provision of affordable Low Vision equipment. Social isolation and lack of human contact were prominent in the conversations with interviewees – nearly a quarter of the participants in the study never, or rarely, went out to the shops. Confinement to the home due to low self-confidence, inability to negotiate the outside world, and lack of visitors or people to act as guides were principal barriers to social inclusion. Participants talked touchingly of the need for greater human contact and the negative consequences of remaining too isolated: “Every evening I am on my own…. I’m longing to hear a human voice….. I feel I want to scream, just for human conversation”. D:\533582735.doc 2 4.2 Participants had little or no knowledge or information of support groups, community services or specialist housing options for people with visual impairment, and expressed a desire for a reliable source of general information. Another Pocklington-commissioned research study evaluated its Day Services for people with a visual impairment in the West Midlands. 6 The aim of this study was to identify a holistic understanding of service users’ needs and outcomes, and how these might be met. The study was based on interviews with users of Day Services, other people with a visual impairment and key stakeholders. Significantly, both user groups ranked as “most important” the need for “meeting people and friendship”. The over-arching strategic recommendation of the study was that the purposes and the aims of the services should be expressed in terms of outcomes for people with a visual impairment rather than services. Furthermore, outcomes should meet individual needs and also promote the inclusion of visually impaired people in mainstream provision. Examples included: training of staff in leisure centres, libraries, supermarkets and taxi firms about how to include people with a visual impairment. Operationally, the researchers developed an outcome-focussed assessment framework, with the resultant action plan likely to involve linking service users with other groups and services in the community. Services would help visually impaired people to maintain their independence and live active lives within their own communities. Services would also work with friends and relatives to help them maintain and develop their relationships with people with a visual impairment. 4.3 Many of Pocklington’s research studies show that quality of life and well being could be so dramatically improved, at relatively little cost, through “low level” preventive interventions such as a home visiting / befriending service. 5 KEY ISSUES CAUSING CONCERN TO POCKLINGTON 5.1 The continuing lack of a “level playing field” between the Government and the voluntary and community sector The perceived lack of a level playing field poses a continuing and major threat to the future of collaboration and partnerships between Central Government, Local Authorities and the voluntary sector. On the one hand, the Government actively encourages voluntary sector organisations to take a larger part in the delivery of public services – because this is seen as a good way of giving ownership of public services to the local community. Likewise, volunteers are valued because they work and are grounded in local neighbourhoods and communities. On the other hand, there seems to be no equity in annual fee uplifts between the voluntary and public sectors ie: Local Authority staffed services regularly attract RPI or above, whilst annual fee uplifts for Service Level Agreements with voluntary organisations are usually offered, “take it or leave it”, at least 1% below RPI. D:\533582735.doc 3 There is a voluntary sector compact that is often not known or not accepted, with the result that many Local Authorities have the expectation that the charity and voluntary sectors will be expected to subsidise public sector services. Likewise, disparities between public sector and charitable and voluntary salary levels are not addressed. Also, “key worker” status in the housing market is not extended to voluntary sector staff. 5.2 Funding of the preventive agenda Pocklington applauds the central theme within the Green Paper – that people should be at the centre of planning services and their delivery – and strongly welcomes the vision of moving from an acute, crisis-driven agenda to a preventive agenda. However, given the well-known demographics of old age, Pocklington believes that it is unrealistic for the policy agenda foreseen in the Green Paper to be achieved simply and solely from projected efficiency savings. We believe there should be an “Invest to save” approach, with additional funding attached. In our experience, the needs of people with sight loss (as demonstrated by our research) are not yet adequately recognised by Local Authorities or other social care providers – in terms of priority, risk and the additional costs of a specialist service. 5.3 Collaboration with the Voluntary Sector The vision of personalised services, healthy communities and equality is likely to be secured by a change, not only of attitudes but also culture, and delivered by way of genuine transparent collaboration between commissioning authorities and voluntary sector organisations (see 5.1 above). 5.4 Housing Models Pocklington also believes that we are in danger of becoming too onedimensional in our thinking. What is needed is more choice for older people, through providing a range of innovative housing models. Pocklington, through its research and development programme is currently looking at piloting new supported housing models. 5.5 Extra care sheltered housing Whilst Pocklington welcomes Extra-Care sheltered housing becoming the preferred alternative to residential care, this form of housing will only ever be available to a small minority (5-10%) of older people. Therefore, the vast majority of our resources and energies will have to be directed to those people who choose to remain in the home they have lived in for many years. 5.6 Residential Care There is a danger in “writing-off” residential care. Pocklington believes that the more modern residential care homes do have a part to play in the range of provision for older people. Also, that residential care could well be the most appropriate solution for people with high dependency needs – for example: people with dementia and sight loss. D:\533582735.doc 4 5.7 Appropriate information, advice and advocacy A common finding from much of our research is the lack of good quality information and advice to enable people to make informed choices. Pocklington believes that we need “one-stop” advice, nationally and locally. 6 CONCLUDING COMMENTS Thomas Pocklington Trust looks forward to the detail of the White Paper which will no doubt take account of the myriad responses from voluntary sector organisations during the consultation period. Pocklington intends to continue to play an active part in engaging in the process with Government – as a sight loss Charity, as a member of the Voluntary Organisations Disability Group (VODG), and of Vision 2020 – the umbrella charity for sight loss organisations. Likewise, Pocklington continues to welcome proposals from the Department of Health, Local Authorities and sight loss charities for collaborative research, within our aims as outlined earlier. Thomas Pocklington Trust 5 Castle Row Horticultural Place Chiswick W4 4JQ Tel: 020 8995 0880 www.pocklington-trust.org.uk REFERENCES: 1. J R Evans, AE Fletcher, RPL Wormald et al. Prevalence of visual impairment in people aged 75 years and older in Britain: results from the MRC trial of assessment and management of older people in the community. Br J Ophthalmology 2002;86:795-800. 2. JR Evans, AE Fletcher,RPL Wormald. Causes of visual impairment in people aged 75 years and older in Great Britain: an add-on study to the MRC Trial of Assessment and Management of Older People in the Community. Br J Ophthalmology. 2004;88: 365-370. 3. In: Towards a New Research Policy: compiled by Dr Angela McCullagh, Pocklington, 2000. Available from Thomas Pocklington Trust, London. 4 Housing and Support Needs of Older People with Visual Impairment – experiences and challenges. J Hanson, J Percival, R Zako and M Johnson, UCL and Bristol University. Pocklington Occasional Paper 1. 2003. 5. Housing and Support Needs of Adults aged 18-55 with Impaired Vision. J Hanson, D Osipovic, K Moore, J Percival and K Rehman University College London. Forthcoming research and Good Practice Guide, jointly sponsored by the Housing Corporation and Pocklington. 2005. 6. An evaluation of Pocklington Day Services in the West Midlands: M Willis. Dr G Douglas and S Pavey: University of Birmingham. 2003. D:\533582735.doc 5 D:\533582735.doc 6