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The NHS was set up to care for everyone equally on the basis of need. Yet in the eyes of some in the medical profession, people with learning difficulties are clearly less equal than others.

This has been starkly illustrated in several recent cases. In March the parents of a teenage boy with autism and severe learning difficulties went to the High Court to challenge a hospital's refusal to give him a potentially life-saving kidney transplant. The hospital had said it would only provide their son with palliative care. Judge Dame Elizabeth Butler-Sloss said a kidney transplant should not be rejected on the grounds of the patient's inability to understand the purpose and consequence of the operation or concerns about the management of his behaviour.

Mary Hassell, a partner at Parlett Kent solicitors firm in London, a specialist clinical negligence practice, worked on the case. "Our philosophy is that everyone has an equal right of access to health care regardless of their disability," she says. "The judge gave the analogy that a young child may not understand what is happening to them when they need a life-saving operation, but they would still be treated."

Hassell says these types of case represent an expanding area of litigation as medicine increases the options available to people, and patients and families are more prepared to challenge medical decisions.

People with learning difficulties have greater health needs than the general population, yet receive poorer support from mainstream services. But why is this? Attitudes and assumptions play a big part.

Jackie Rodgers, senior research fellow at the Norah Fry research centre, says: "They aren't valued or seen as equal people with equal rights to have their health needs met. They are not included in health initiatives to improve the health of the national population."

The importance of equal access to health care was finally recognised in the learning difficulties white paper Valuing People. Here, the government set a target for all people with learning difficulties to have a health action plan by June 2005. Campaigners have welcomed the move, but it still leaves two years before all people with learning difficulties begin to get their health needs taken seriously. Although learning disability partnership boards working with primary care trusts are responsible for meeting the 2005 target, Rodgers says: "The problem now is that everyone sees it as someone else's responsibility."

Statistics from learning difficulties charity Mencap reveal the extent of the problem. Although 85 per cent of women in the general population have cervical smear tests, this ranges from just 3 per cent of women with learning difficulties living in the family home to 17 per cent of those in care. One reason behind this seems to be that the family or carers mistakenly believe they do not need screening because they assume they are not sexually active - even though this is not a prerequisite for cervical cancer developing.

Breast screening shows a similar trend. It is taken up by 76 per cent of women over 50 in the general population, but only 17 per cent of women over 50 with learning difficulties living at home and 52 per cent of those in care receive screening.

People with learning difficulties living in formal care settings are more likely to benefit from a structure to encourage regular health checks and support to allow them to make and keep an appointment.¹ The self-referral element to primary care means that those living in informal support settings are at a disadvantage as their health checks may depend on whom they live with.

Most GPs are unlikely to know whether they have a person with learning difficulties on their caseload, says Janet Cobb, primary health care lead at North West Training and Development Team, which works on behalf of this client group and is funded by health and social care authorities.

The problem starts in childhood. Learning difficulties are usually diagnosed before the age of two. There is regular attention and assessment of health needs by a specialist paediatrician until the child reaches 19 when their health care becomes the responsibility of the GP, often with little or no handover. Cobb says: "It's done with good intentions, but it creates a segregated service."

There are other barriers preventing people with learning difficulties seeing their GP. These include difficulties if the patient has challenging behaviour; the standard 10-minute appointment being too short; buildings that may not be wheelchair-accessible; communication problems; and dependence on carers accompanying patients to the surgery.

And even during an appointment illnesses can go unnoticed because the patient sometimes cannot communicate the pain they are in; doctors may not recognise or understand their health needs because they have little experience in dealing with this client group; professionals may talk to the carer rather than explain the situation to the patient; or a patient may be denied treatment because of their learning difficulty.

Given that medical students have just a couple of days' tuition on the needs of this client group, it is hardly surprising that many practitioners find it hard to relate to their needs. According to Cobb: "There are few training and development opportunities for generic primary health care staff in relation to learning disabilities. I'd like to see awareness of the needs of this client group taught in every NHS module."

Because of this lack of knowledge, if a person with learning difficulties has to go into hospital then often the responsibility for 24-hour care lies with their carers. Cobb cites one case in which a woman with learning difficulties was admitted to hospital with pancreatic problems. After spending about six weeks in intensive care, she had made a good recovery and was transferred to a general ward on her local hospital.

Her parents had stayed with their daughter for the whole period, but went home for a change of clothing and a meal in the early evening, leaving her in the care of ward staff. The patient slipped down the bed, covered her tracheotomy and suffocated. She had a heart attack and died 10 days later. "The ward staff had not assessed the risks adequately," says Cobb. "This shows how people with complex needs are at risk within mainstream health care settings."


Although plans to close all long-stay hospitals were welcomed by people with learning difficulties and those working with them, it has caused added problems. The closure programme is due to be completed next year, leaving nearly all people with learning difficulties living in the community and needing mainstream health services. This is a significant shift in policy - and means that even those with the most profound and complex health needs must rely on primary care and acute service practitioners rather than having access to specialist services.

"While the philosophy behind this approach was sound, there hasn't been enough preparatory work," says Colin Beacock, adviser in learning difficulties for the Royal College of Nursing. "While we supported the closure of the remaining long-stay hospitals, we were anxious that there was an underestimation of the level of severe needs."

Beacock says it is not simply a question of there being enough services, or even whether practitioners have the right level of understanding of the needs of this client group. "It's about appreciating the continuing need for a form of specialist service, even though it should never be based in institutional care. People with learning difficulties are the acid test of whether NHS modernisation has led to an equitable and accessible service because they are probably the most marginalised and needy citizens of our society."

1 R Band, The NHS - Health for All? People with Learning Disabilities and Health Care, Mencap, 1998

2 J Elliott, C Hatton and E Emerson, "The health of people with learning disabilities in the UK: evidence and implications for the NHS", Journal of Integrated Care, Vol 11, 2003

For further information on health action plans go to www.doh.gov.uk/learningdisabilities/healthactionplans.htm

Health facts for client group

• Respiratory disease and coronary heart disease are the the most common causes of death. 
• Prevalence of schizophrenia is about three times as great as that of the general population. 
• Prevalence of dementia is much higher among older adults with learning difficulties than in the general population. 
• Prevalence of epilepsy is at least 20 times that of the general population. 
• This client group is much more likely to be either underweight or obese (rather than a healthy weight). 
• Less than 10 per cent of adults with learning difficulties eat a balanced diet, and most do not eat enough fruit and vegetables and have little knowledge or choice about healthy eating.  Source: Reference ²

Mencap's top five wishes

• Annual health checks and equal access to health care for all people with learning difficulties. 
• Primary care groups and primary care trusts to take responsibility for the health of this client group. 
• Better learning difficulties training for NHS staff. 
• More speech and language therapists, physiotherapists and community learning difficulty teams. 
• Learning difficulty registers for children and adults so that services can be properly planned.   

'It's all one big fight'

Paul Ogaza, aged 26, has severe learning difficulties and epilepsy. He is blind in one eye, cannot walk or talk, and has had major bowel problems since early childhood that have been continuously misdiagnosed.  Symptoms would build up over a three-week period during which Paul would become highly distressed and have severe bowel problems. This would be followed by Paul sleeping for 24 hours, after which he'd be fine, only for the pattern to repeat itself.  

Paul's GP thought he was constipated and suggested laxatives, but these only made the problem worse. At one stage he was rushed into hospital, where a weekly enema was suggested. 

"They were a torture to him," says his mother, Mary. When they went back for the six-week check-up she said she wanted to discontinue the enemas. She was told "it was a case of me not being able to cope". At this stage, Paul had not been examined or seen by a consultant. 

Three days later she received a letter from the hospital, saying "we feel that further investigation into his problem will be difficult and unrewarding".  Unable to continue witnessing Paul's pain, Mary started to search out information herself and was recommended St Mark's Hospital in Harrow, which specialises in bowel problems. Last year Paul was diagnosed with chronic intestinal pseudo obstruction, resulting in a major operation to remove his large bowel and rectum.  

"He's a completely different young man, has put on weight, grown, and is much brighter because he's not riddled with pain," says Mary. "It's all one big fight, and if you are not a strong person you haven't got a hope in hell."   

STOP PRESS    People with learning difficulties should benefit from a new government appointment. Vicky Stobbart at the National Patient Safety Agency hopes to reduce the time it takes for people with learning difficulties to be diagnosed and treated for illnesses. She also wants to improve access to health screening services, particularly breast and cervical screening.