The author reviews Valuing People's policy, the limited progress in taking the agenda forward between 2001 and 2006,outlining some key actions that should be taken to promote better health outcomes for people with intellectual disabilities.

Rob Greig (UK)

Introduction
The Government's White Paper, Valuing People, sets the policy agenda for the lives of people with learning disabilities into the 21st century. It outlines a radical agenda to ensure the health of people with learning disabilities improves, in particular by ensuring that mainstream health services take on their responsibilities to be inclusive of learning disabled people. This contribution reviews the reasons behind this policy, the limited progress between 2001 and 2006 in taking the agenda forward, and outlines some key actions that should be taken locally to promote better health outcomes for people with learning disabilities.

The general health of people with learning disabilities is significantly worse than that of the general population, as the following facts demonstrate:

  • people with learning disabilities have a significantly increased risk of early death (Hollins et al, 1998).
  • death from respiratory diseases is 3 times that of the general population (Puri et al., 1995)
  • there is a failure to screen for, identify and treat a range of illnesses that are particularly prevalent among people with learning disabilities (e.g. thyroid dysfunction and congenital heart problems) (Rooney and Walsh, 1997; Brookes and Alberman, 1996).
  • more than 40% have a hearing loss, which is unidentified in 75% of cases (Yeates, 1995).
  • the prevalence of schizophrenia is around 3 times higher than in the general population, with an excessive and inappropriate use of antipsychotic medication (Emerson, 2001; Doody et al., 1998).

In spite of this, the response of the NHS has traditionally been poor. In the Government's own words, the NHS 'has failed to consider the needs of people with learning disabilities.' This position has recently been highlighted through the Disability Rights Commission's Formal Investigation into the health inequalities facing people with learning disabilities.

The aims of Valuing People

In order to help address these issues, in 2001 the Government produced a White Paper for England called Valuing People: A New Strategy for Learning Disability for the 21st Century, which required a radical change in the way the NHS as a whole operates (Department of Health 2001). Valuing People primarily has a whole-life, social inclusion agenda, in which the promotion of positive health is an essential building block: unless people are well, they cannot take their place as full members of their communities.

The sections in Valuing People about health are therefore concerned with ensuring that people with learning disabilities benefit fairly and equally from NHS resources and initiatives and are not excluded from the health service needs of the whole population. Achieving this requires a major change in the way in which the NHS - both mainstream and specialist services - works with people with learning disabilities.

Rectifying the current situation

Back in 2001, in some ways managers and clinicians could not be blamed for that position of neglect. The role of the NHS in relation to people with learning disabilities used to be seen as the provision of long-stay hospitals. Then the task was to close the hospitals, and a common misunderstanding of the social model of disability meant that many health authorities thought their responsibilities in relation to people with learning disabilities were largely finished once the hospitals were closed. Meanwhile, the specialist health services often undermined their own position by sending out a message (sometimes intentional, sometimes not) that mainstream services need not include people with learning disabilities because the issues and challenges were so great that specialist services would deal with them. The genuine concern to deliver a health service to people with learning disabilities resulted in specialist professionals carrying out tasks that would have better come from the mainstream NHS.

Five years on, with the publicity surrounding Valuing People, the development materials and support provided through the Valuing People Support Team, and the requirements of the Disability Discrimination Act, all make this position much less
understandable. Across the country, there are a number of positive examples of innovative approaches, with specialist services providing appropriate care and mainstream clinicians offering sensitive and inclusive healthcare, but these are still in the minority. In a review of Valuing People carried out in 2005, this author identified change on health issues as the weakest area of progress since the publication of the White Paper (Greig, 2005).

Promoting good health
Valuing People was unequivocal in its intent to change this. It stated that the role of the NHS as a whole is to promote and ensure the good health of people with learning disabilities. The challenge facing mainstream managers and clinicians is to achieve the inclusion of people with learning disabilities in all aspects of service delivery, while specialist learning disability services change to focus on supporting, training and working alongside mainstream services as they aim to achieve this. In short, the objective is to reduce the health inequalities experienced by people with learning disabilities. The new Public Sector Duty contained within the Disability Discrimination Amendment Act re-emphasizes this - making it clear that where any section of disabled people receives poorer outcomes from public services than the rest of the population, there is a legal requirement for those public bodies to take action to rectify the situation (Disability Discrimination Act, 2005).

Some of the main expectations from Valuing People are outlined in Table 1. These represented a radical and challenging policy and required a fundamental shift not only in service design but also in the organizational culture of parts of the NHS. It is crucial to emphasize that the health aspects of Valuing People are not about the unsupported shifting of responsibility for the healthcare of people with learning disabilities onto GPs, primary care staff and acute hospitals. Rather, the emphasis is on a new partnership whereby specialist learning disability health professionals change their priorities, so that they work alongside and offer support to mainstream staff. The specialist staff can and will be a willing resource to help make new ways of working a reality.

The entire policy is about redressing the collective failure of the NHS with regard to people with learning disabilities. Such a level of poor health and often undiagnosed illness cannot be justified in a modern health service. At its most simple, this is an issue of clinical governance. For example, all people with learning disabilities should be registered with a GP, which is not currently the case. The new partnership between primary care, acute services and specialist learning disability staff offers the potential for people to have their health needs comprehensively addressed - often for the very first time.

TABLE 1
  • The most important issue for the NHS to address is developing the necessary skills to consider the needs of people with learning disabilities.
  • It is expected that GPs, practice nurses and other members of primary care teams will provide the main contact with the NHS for people with learning disabilities.
  • Mainstream secondary healthcare services must be accessible to people with learning disabilities.
  • All the National Service Frameworks (NSFs) for specific conditions must be delivered in a way that includes people with learning disabilities with those conditions/needs.
  • All people with learning disabilities are to have a proactive Health Action Plan by 2005
  • In order to help achieve all the above, specialist NHS professionals are to change the focus of their work to have a greater priority in supporting, teaching and working with mainstream clinicians and managers.

Taking the agenda forward.
Many practitioners across the country are working in new ways, and Table 2 describes some practical ways in which specialist and mainstream staff are taking the agenda forward. Central to this at a local level are the Learning Disability Partnership Boards, in which primary care trusts should be central and influential members. (There are 150 Partnership Boards across England, one for each local authority social services area.)

The challenge for the NHS (changing historical working practices) and the prize at stake (significant health gains for up to half a million people) are both substantial. People with learning disabilities themselves made it clear throughout the development of Valuing People and in its review, in The Story So Far, that getting a fair deal from the NHS was one of their top priorities. A health service that aims to be genuinely responsive to the patient must now try to live up to that hope.

TABLE 2: Practical ideas for joint action
  • Identify all people with learning disabilities in a GP catchment area by combining primary care, specialist team and social services databases in order to ensure people are registered with the practice.
  • Use GP information systems to cross-reference people with learning disabilities against health conditions known to be particularly relevant among that population.
  • Use this information to ensure that NSF targets (e.g. in coronary heart disease) are achieved equally among learning-disabled people.
  • Establish protocols and staff training in the acute sector to improve the quality of people's experience when admitted to hospital.
  • Use the 'Better Metrics' initiative to set local targets for the improvement of healthcare for people with learning disabilities and work with neighbouring health communities to compare progress and performance.
  • Focus on people who are placed out of the area in residential, nursing or hospital care to identify shortcomings in local specialist services and use plans to bring those people back home as a way of developing local service competence.

References

Hollins S, Attard M T, von Fraunhofer N, Sedgwick P. Mortality in people with learning disability: risks, causes and death certification findings in London. Dev Med Child Neurol 1998; 40: 50-6.
Puri B K, Lekh S K, Langa A, Zaman R, Singh I. Mortality in a hospitalized mentally handicapped population: a 10-year survey. J Intellect Disabil Res 1995; 39: 442-6.
Rooney S, Walsh E. Prevalence of abnormal thyroid function tests in a Down's syndrome population. Int J Med Sci 1997; 166: 80-2.
Brookes M E, Alberman E. Early mortality and morbidity in children with Down's syndrome diagnosed in two regional health authorities in 1988. J Med Screen 1996; 3: 7-11.
Yeates S. The incidence and importance of hearing loss in people with severe learning disability: the evolution of a service. Br J Learn Disabil 1995; 23: 79-84.
Emerson E. Challenging behaviour: analysis and intervention in people with severe intellectual disabilities. 2nd edn. Cambridge: Cambridge University Press, 2001.
Doody G A, Johnstone E C, Sanderson T L, Cunningham-Owens D G, Muir W J.
'Propfschizophrenie' revisited: schizophrenia in people with mild learning disability. Br J Psychiatry 1998; 173: 145-53.
Department of Health. Valuing people: a new strategy for learning disability for the 21st century. London: The Stationery Office, 2001.
Greig R. Valuing people: the story so far. London: Department of Health, 2005.
Disability Discrimination Act 2005. Chapter 13. An Act to amend the Disability Discrimination Act 1995; and for connect purposes. Available here

Useful website
For more information about Valuing People, see http://www.valuingpeople.gov.uk

This article was published in Psychiatry 2006; 5(9): 295-97, and is reprinted by kind permission of Medicine Publishing. It is a revised version of The New Government Policy in England: A Change of Direction, published in Psychiatry 2003 and on this website in 2004