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The diagnosis and management of learning disability

01 Oct 2006

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Providing health care for people with learning disabilities can be one of the most

rewarding areas of general practice, but it is also one of the most challenging. People with moderate, severe and profound learning disabilities run twice the risk of significant health problems compared with the general population.1 Their life expectancy is reduced and levels of morbidity are increased. Learning disabilities are associated with higher levels of epilepsy, sensory impairment and behavioural disorder, and approximately 16 per cent of patients also have epilepsy.2

People with learning disabilities often live in poverty, may be socially isolated, and will often suffer from poor nutrition leading to either obesity or underweight. Low levels of health screening and poor uptake of health promotion activities expose them to the risk of health inequalities.3

Definition

A learning disability includes the

presence of:

• A significantly reduced ability to understand new or complex information, or to learn new skills (impaired intelligence)

• A reduced ability to cope independently (impaired social functioning)

• Onset before adulthood with a lasting effect on development.4

Learning disability may be mild, moderate, severe or profound. The definition includes those adults with autism who also have learning disabilities. People with Asperger syndrome are not categorised as learning disabled, as their intelligence is within the normal range,

nor are people who have dyslexia or a reading disorder.

Causes

In the UK, Down's syndrome is the commonest known cause of mild and severe learning disability. Other chromosomal anomalies may be associated with learning disability, but they are relatively rare. In the developing world endemic cretinism caused by

iodine deficiency remains a common, but easily preventable, cause of severe learning disability.

Among inherited forms of learning disability it now seems that fragile X syndrome, although still the most common inherited condition associated with learning disability, does not occur as frequently as was once thought.

Extremely low birth-weight children, even in optimum socioeconomic environments, run a high risk of suffering brain damage and 20 per cent are likely to become significantly learning disabled. Brain damage due to bacterial meningitis in childhood rarely gives rise to significant learning disability, but fetal alcohol syndrome is now the second commonest known cause in many countries.

Maternal smoking in pregnancy may also be a preventable cause of learning disability: even smoking one cigarette per day on five or more days per week in pregnancy may increase the risk of learning disability by 50 per cent, and there is evidence of a dose-response relationship. However, for most children with learning disability the cause remains unknown.5

Prevalence

The prevalence of learning disability in the community is much higher than many doctors realise. The rate for severe and profound learning disability in Western countries is 3-4 per 1000 population. In England there are about 210,000 people with severe and profound learning disabilities. Of these around 65,000 are children and young people, 120,000 are adults of working age and 25,000 are older people. The rate for moderate learning disabilities is around 25 per 1000 population - some 1.2 million people in England.4 There are ethnic variations: the prevalence of severe learning disability for those aged between five and 34 years is three times higher among the Asian community compared to the non-Asian community.6

Supporting families

Doctors will often have to support parents when they learn that their child has a learning disability. Such a discovery can trigger anxiety and distress in young parents and the transition from being ordinary parents to parents of a disabled child can be traumatic. They may feel isolated and alone because they don't know anyone else facing the same problems. Parents may want contact with another family who have been through a similar experience and will want information about their child's condition. Contact a Family, a UK charity for families with disabled children, enables families to get in touch with each other.7

Reactions to having a disabled child vary, but most parents experience a deep sense of loss. In many cases a diagnosis will have been made by a paediatrician but in others no medical diagnosis is been made and the parents may continue for years to search for a reason for their child's failure to develop normally. The local community learning disability team may be able to offer help. Voluntary organisations that can provide information and advice include MENCAP8 and the National Autistic Society.9

Demographic changes

Most long-stay hospitals are now closed and the former residents live in local communities. Nowadays, all primary health care for people with learning disabilities is provided within general practice and people with learning disabilities are no longer 'out of sight and out of mind'. The proportion of learning disabled children with complex and multiple disabilities appears to be increasing, in part because more are surviving into adulthood. Over the past decade there has been a sharp rise in

the reported numbers of school-age children with autistic spectrum disorders, many of whom will present challenging behaviour.

It is estimated that the number of people with severe learning disabilities is likely to increase by 1.1 per cent per year for the next two decades,4 reflecting increased life expectancy, especially among people with Down's syndrome. Indeed, the most significant demographic change is that people with learning disability are now living much longer and suffering similar patterns of ill health to the non-disabled population. As life expectancy increases, so do age-related diseases, and this includes a heightened risk of Alzheimer's dementia among those with Down's syndrome.

The primary care team

GPs and their primary care colleagues have a key role in the diagnosis and management of acute and chronic illness, in health promotion, health screening

and counselling and support. A typical primary care team in the UK may expect to be consulted once a day about the health care needs of a person with a learning disability.10

The diagnosis and management of medical disorders in people with learning disabilities is not always straightforward. 'Diagnostic overshadowing' (when symptoms or changes in behaviour are viewed as part of the learning disability) may complicate diagnosis. For example, in the case of a young woman with Down's syndrome who is reported to be less alert than usual, the casual observer might assume that it is her Down's syndrome that is slowing her up, but it is also possible that she has incipient hypothyroidism

and the GP will need to check her thyroid function. Although often missed in the past, clinical or sub-clinical hypothyroidism is regularly found in up to a third of people with Down's syndrome.

Similarly, 'challenging behaviour' presenting in a man with profound learning disabilities may be taken to be a constituent part of his behaviour, but his behavioural disturbance may actually have been triggered by pain from an undiagnosed middle ear infection, or a dental abscess or perhaps intense pain from oesophageal reflux in an unrecognised and untreated hiatus hernia.

In a study in Bristol we found that people with learning disabilities are likely to visit their GP just as often as other patients,11 but are less likely to be offered health screening or be engaged in health promotion. We found that few doctors feel they had adequate training to deal with their needs and research has shown that some primary care staff may be reluctant to engage with this group of patients. Training interventions for primary care staff have been shown to be effective.12,13 Research among older people with learning disabilities has found inadequate diagnosis and treatment of specific medical conditions, including heart disease, hypothyroidism and osteoporosis.14,15

A recent Disability Rights Commission study16 found that rates for conditions such as diabetes, stroke and ischaemic heart disease were lower among people with learning disabilities than in the rest of the population. However, it is known that diabetes is often under-diagnosed in people with learning disabilities, and primary care records may not accurately reflect the full extent of health problems. The DRC study also found that those with a stroke have fewer blood pressure checks than others in the population who have had a stroke (78 per cent, compared with 99 per cent). They found that health checks identified significant unmet health needs among people with learning disabilities but when a second health check was given one year later further significant unmet needs were identified, some of them serious. The DRC study noted that health checks for people with severe mental health problems have been incorporated into the majority of primary care practices in England, thanks to GP contract financial incentives, but unfortunately health checks for people with learning disabilities do not attract similar financial incentives.

However, important changes have been made to the GP contract in Wales, which now provides incentives to general practices to provide regular health checks for people with learning disabilities. Practices have to compile their own registers of people with learning disabilities known to social services, invite them for checks and carry out the check using a standard format. Extra funding has been provided by the Welsh Assembly Government.5

Valuing people

In March 2001, the Government published a white paper, Valuing People,4 which set out policy for improving the lives of people with learning disabilities and their families and carers, based on the recognition of their rights as citizens, their social inclusion in local communities, choice in their daily lives and real opportunities to be independent. The remit of the new policy is broad and contains policies that have a direct impact on the delivery of primary health care.17

Valuing People stated that all people with learning disabilities should benefit from primary health care provided by a local GP and a target date of June 2004 was set for all people with learning disabilities to be registered with a GP. Previously, many people, especially those in long-stay institutions, had never had the benefit of GP care.

The Department of Health expects that GPs will identify all people with learning disabilities registered on their list using Read codes and ensure that patients with learning disabilities are invited to attend for health screening if they have not visited the surgery in the last three years.18

Health Action plans

Valuing People also introduced the concepts of health action plans and health facilitation.19 A health action plan (HAP) is a mechanism that has been introduced to link the individual with the range of services and support they need. The HAP is usually co-produced with the disabled person. The function of the HAP is to educate and inform those who are working with the patient about their health needs, improve the co-ordination of services for the individual and influence services that affect a person's life. The HAP includes details about the need for health interventions, oral health and dental care, fitness and mobility, continence, vision, hearing, nutrition and emotional needs, as well as details of medication taken, side-effects and records of any health screening. HAPs are offered and reviewed at critical stages in people's lives.

A copy of the HAP should be held at the GP surgery, either on paper or on the computer. This need not be an accessible version. Where there are aspects of the HAP that the person does not want recorded in a patient-held record, this information can be recorded on the surgery-held record. After completing the HAP, a date for a review should be agreed.

The health facilitator, who may be a nurse or other health worker, helps GPs and others in the primary care team to identify patients with learning disabilities. Their task is to facilitate, advocate and ensure that people with learning disabilities gain full access to the health care they need, whether primary or secondary health services. The role of the health facilitator embraces mental health as well as physical needs. The health facilitator's role is especially important in enabling people with learning disabilities to navigate their way around the health service. Valuing People has clarified that all people with learning disabilities enjoy the benefits of the National Service Framework for Mental Health. A further policy paper, Green Light for Mental Health, provides details on how this should operate in local communities.20

challenges ahead

GPs provide much of the diagnosis, treatment and management of acute and chronic illness for people with learning disabilities and so have a key role in health promotion and health screening, as well as in providing counselling and support. Access to primary health care, including health screening and health promotion, is not as good as it should be. The challenge is to deliver good quality health care for people with learning disabilities wherever they live. The reward lies in seeing these patients enjoying good health and leading fulfilling lives.

Online sources of information

• Contact a Family http://www.cafamily.org.uk

• Health Evidence Bulletins Wales http://www.hebw.cf.ac.uk This includes information on learning disabilities

• NHS Learning Disabilities Specialist Library http://www.library.nhs.uk/learningdisabilities

• MENCAP http://www.mencap.org.uk

• National Autistic Society http://www.nas.org.uk

• Valuing People http://www.valuingpeople.gov.uk Government website offering full access to all the valuing people policy papers and guidance

References

1 Van Schrojenstein Lanteman-De Valk, HMJ, Metsemakers JFM, Haverman MJ et al. Health problems in people with intellectual disabilities in general practice: a comparative study. Family Practitioner 2000;17(5):405-7

2 Morgan CL, Baxter H, Kerr MP. Prevalence of epilepsy and associated health service utilisation and mortality among patients with intellectual disability. Am J Ment Retard 2003;108:293-300

3 Kerr M. Improving the general health of people with learning disabilities. Ad Psychiatr Treat 2004; 10:200-6

4 Department of Health. Valuing People: a new strategy for learning disability for the 21st Century. London: Department of Health, 2001. http://www.valuingpeople.gov.uk

5 National Assembly for Wales. Health Evidence Bulletins Wales; Learning Disabilities, Cardiff: National Assembly for Wales, 1999. http://www.hebw.cf.ac.uk

6 Emerson E, Azmi S, Hatton C et al. Is there an increased prevalence of learning disability among British Asians? Ethn Health 1997;2:317-21

7 Contact a Family. http://www.cafamily.org.uk/

8 MENCAP. http://www.mencap.org.uk/

9 National Autistic Society. http://www.nas.org.uk/

10 Lindsey M, Russell O. Once a day one or more people with learning disabilities are likely to be in contact with your primary healthcare team. How can you help them? London: Department of Health, 1999. http://www.valuingpeople.gov.uk

11 Whitfield M, Langan J, Russell O. Assessing general practitioners' care of adult patients with learning disabilities: case control study. Qual Health Care 1996;5:31-5

12 Melville CA, Finlayson J, Cooper SA et al. Enhancing primary health care services for adults with intellectual disabilities. J Intellect Disabil Res 2005;49:190-8

13 Melville CA, Cooper SA, Morrison J et al. The outcomes of an intervention study to reduce the barriers experienced by people with intellectual disabilities accessing primary health care services.

J Intellect Disabil Res 2006;50:11-17

14 Hatton C, Elliott J, Emerson E. Key highlights of research evidence on the health of people with learning disabilities Lancaster: Institute for Health Research, Lancaster University, 2002. http://www.valuingpeople.gov.uk

15 Beange H, Lennox N, Parmenter T. Health targets for people with an intellectual disability. J Intellect Dev Disabil 1999;24:283-98

16 Disability Rights Commission. Equal Treatment. Closing the Gap: a formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. 2006. http://www.drc-gb.org/healthinvestigation

17 Martin G. 'Valuing People' - a new strategy for learning disability for the 21st century: how may it impinge on primary care. Br J Gen Prac 2001; 51:788-90

18 Valuing People Support Team. Improvement, expansion and reform - ensuring that all means all. London: Department of Health, 2003. http://www.valuingpeople.gov.uk

19 Department of Health. Action for Health: Health Action Plans and Health Facilitation: detailed good practice guidance for Partnership Boards, 2002. http://www.valuingpeople.gov.uk

20 Valuing People Support Team. Green light for

mental health. How good are your mental health services for people with learning disabilities?

A service improvement plan, 2004. http://www.valuingpeople.gov.uk

REFERENCES

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