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Healthcare for people with learning disabilities

Scott Harrison
RN RSCPHN BSc(Hons) PGCert
Community Matron
Warrington PCT

Governmental focus on the development of new and effective health services has centred on the growing and increasingly complex population of patients with long-term conditions and chronic ill-health.(1) Both locally and nationally, this has been interpreted as older adults, who are clearly identified as being more likely to suffer from chronic health than the younger population.(2) However, guidance documents are clear that long-term conditions are not simply age- related.(1,2) The highest incidence of poorly controlled long-term conditions occurs in disadvantaged groups, who are often high-frequency users of both primary and secondary care services.(2) The most "at-risk" patient group for poorly controlled chronic ill-health are those patients with highly complex needs who are either housebound or require long-term residential or nursing care. This group often experiences poor coordination of their care, receives reactive health services rather than proactive management, and experiences "revolving door" syndrome through their repeated admissions to secondary care.(2)
In my current role as community matron for people with learning disabilities, I have been closely involved in the local interpretation of the long-term conditions agenda, to ensure that my patient group is identified as a key at-risk group.

Improvements needed
The health of people with learning disabilities has been an area of concern for many years and despite a range of reports and policy recommendations aimed at improving the situation, very little has actually changed.(3) Despite a slow increase in life expectancy, mortality rates for people with learning disabilities show a significantly increased risk of early death compared with the general population, particularly for those patients with Down's syndrome and profound and multiple learning disabilities (PMLDs).(4)
The high mortality rate is clearly linked to the multiple and ongoing failures in both primary and secondary care, which fail to engage this patient group, and a significant lack of appropriate anticipatory care from social care providers.(3)
Although people with learning disabilities visit their GP (when ill) with similar frequency to the general population, research has illustrated that they are much less likely to receive regular health checks or access health promotion/health improvement activities.(5,6) Most GPs agree that they should meet the medical needs of people with learning disabilities as part of general medical services, although fewer agree that they should take an active role, such as providing regular health checks.(5,7) It is this active involvement with patients with complex health needs that the long-term conditions agenda is directly promoting.(2) When health screening does take place, it often reveals high levels of unmet physical and mental health needs, poor differential diagnoses and the inability of doctors and nurses to see beyond the person's learning disability. The burden of disease and the impact of long-term conditions on the lives of people with learning disabilities are therefore significant, with key areas of concern.(8)

Valuing people
With this backdrop of significant health issues, failures in primary and secondary care and the implications of serious physical and mental health problems being put down to behavioural issues by health professionals, the UK government brought together several key principles in the white paper Valuing People.(9) The white paper provides the health service with key goals for engaging people with learning disabilities in mainstream health services and ensuring that they have equal access to high-quality care, ensuring that all mainstream services uphold the principles of the inclusion agenda: rights, independence, choice and inclusion.
For most patients with learning disabilities, primary care nurses are often the first point of access to health services. Our success in Warrington has relied on the enthusiasm and willingness of nurses in general practice to make their services more accessible. This includes working with the specialist learning disability team to establish practice registers of patients with learning disabilities, and offering health checks to those who have not been seen in primary care for some time.(7-9) It is essential, however, that these checks take into account the specific health concerns for people with learning disabilities. In Warrington, we developed a standardised framework for health needs assessment together with nurses from general practice to ensure that the tool was both effective and practical (see Box 1).(3,4,6)

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High level of care
Many patients with learning disabilities are unsure about their own health. They have not been involved in the key decisions regarding long-term conditions or their role in the improvement of their own health.(8,9) Many of them are totally reliant on others to monitor their health, so an important consideration in providing clinical care to this patient group is to help social care staff to gain confidence in health support. Primary care nurses - with their knowledge and expertise in providing this education - play a central role in ensuring that both patients and their carers fully understand the nature of their health condition and the need to maintain a healthy life.(1) Many areas, including Warrington, have supported this education by developing personal health profiles that support anticipatory care and focus both patients and their carers on the importance of health and the need to develop and maintain an accurate and up-to-date health history.(7)
Good teamwork is essential in making primary care more accessible and meaningful to learning disabled patients. This includes engaging with specialist health professionals from local learning disability teams - an excellent resource for advice and support on communication, making information accessible and helping patients navigate the healthcare system.(7) Primary care nurses are often keen to offer the same high level of care to all of their patients, but lack confidence in dealing with people with learning disabilities, thus partnership working can be the solution to many of the problems that people with learning disabilities often experience. Having a clear understanding of our different, yet complementary, roles ensures that disabling practices are exposed and dismantled and that mutual respect is developed between specialist and primary healthcare services. Neither service can achieve the challenging aims of government health policies for people with learning disabilities in isolation. We all have a role to play in developing primary care services, and the challenge is to make sure that we are fulfilling the right role.

Challenging future
Primary care nurses have an exciting yet challenging future in the changing NHS. Both the health improvement and the long-term conditions agendas have been widely welcomed. However, the realities of translating these national agendas into local action is yet to be achieved. Current health policy, focusing on improved primary care, is a timely and realistic response to very real patient needs, particularly those patients in vulnerable communities, such as the learning disabled. Primary healthcare teams can do much to help people with learning disabilities manage their health and wellbeing more effectively.
People with learning disabilities are people first.  Primary care staff should understand that there is often a greater level of health need in this patient group, and to fully deliver the long-term conditions agenda people with a learning disability cannot be overlooked.

References

  1. DH. Supporting people with long-term conditions: an NHS and social care model to support local innovation and integration. London: DH; 2005.
  2. DH. Supporting people with long-term conditions: liberating the talents of nurses who care for people with long-term conditions. London: DH; 2005.
  3. Mencap. Treat me right: better healthcare for people with a learning disability. London: Mencap; 2004. 
  4. Hollins S, et al. Dev Med Child Neurol 1998;40:50-6.
  5. Kerr MP, et al. J Appl Res Intellect Disabil1996; 9:347-52.
  6. 6. Powrie E.J Adv Nurs2003;42:413-23.
  7. Harrison S, Berry L. Learn Disabil Pract J 2005;8(6):18-21.
  8. Barr O, et al. J Adv Nurs 1999;29:1482-91.
  9. DH. Valuing people: a new strategy for learningdisability for the 21st Century. London: TSO; 2001.