Published: 17/11/2005 Volume 115 No. 5982 Page 16 17
Despite government rhetoric, the physical health of people with learning disabilities and mental health problems remains a low priority. Emily Dent reports
It is the 'last great civil rights battle'.
People who have learning disabilities or mental health problems are still more likely to die young or live with physical health problems than the general population, a report just out shows.
Only last year, the public health white paper acknowledged that more work was needed to help these people get equal rights to NHS healthcare. But a Disability Rights Commission report indicates that little progress is being made.
Equal Treatment: closing the gap shows that people with learning disabilities or mental health problems suffer from poorer access to health services. They have lower rates of routine screening and other essential routine tests.
The report concludes that these inequalities are not due to the intrinsic qualities of the learning disability or mental health problem.
They are caused by the way the NHS treats these people.
Rethink chief executive Cliff Prior, who sits on the commission's inquiry panel, says: 'Many people would say this is the last great civil rights battle. An early death for these people is assumed to be inevitable, but it is entirely preventable. A big part of the solution is realising this.
'People with learning disabilities or mental health problems have the same right to good physical health as the rest of the population, but there is a culture of low expectations.' The DRC's analysis of 1.7 million primary care patients found that people with schizophrenia are more than twice as likely to have diabetes than other patients, and more likely to experience heart disease, stroke, hypertension and epilepsy.
Although not all of these cases could have been prevented, a large number could have been avoided by better overall physical health management, such as measures to tackle obesity and smoking rates.
Both have higher rates among people with learning disabilities or mental health problems.
As part of the investigation, the DRC sent consultation questionnaires to 1,083 disabled people asking about good and bad experiences of using primary care services.
Over half of those who responded said they faced difficulties when trying to use the service provided by a health centre or doctor's surgery.
Many felt that their physical needs were overlooked due to their mental health problem or learning disability.
As one respondent told the commission: 'The doctor just assumes everything is psychological, and if he can't find a reason for it just through talking to me, then it can't be a real illness. I also find my GP is happiest to just give me pills and tell me to go away.' This is something of which DRC commissioner Dr Philippa Russell, who chaired the investigation panel, has had personal experience. She has a son with learning disabilities and has experienced this type of 'diagnostic overshadowing' - where physical symptoms are attributed to an underlying mental health problem or learning disability without proper investigation.
'Physicians had said my son was suffering behavioural problems which led him to scratch his arms and hands raw' she recalls. 'We went to the Isle of Wight on holiday and my son fell over and injured himself.
I took him to a GP to get him checked out and while we were there the GP commented on his arms.
'The GP said he had psoriasis and that the scratching was down to this.
My son had been misdiagnosed by the other physicians because of the assumption that all his problems were behavioural and not physical.
'It is very common to treat the disability and not the person, but GPs are in an ideal position to combat this, ' continues Dr Russell. 'Their general training should enable a more holistic approach to good healthcare and health management, looking at people in the round and not anticipating problems.' The report shows that misdiagnosis is a common complaint and says lack of time is the problem.
As one GP told the inquiry team: 'Time and pressure needed to concentrate mean that we have to run appointment systems and clinics with set times, and that can feel like a barrier to people with mental health needs. Sadly, a more flexible system is simply impossible.' Dr Russell is keen to say that the report is not about blaming GPs, but about finding workable solutions to a complex problem. 'Nothing succeeds like offering a model that works, ' she says. 'We are looking at examples of good practice and trying to find a way to roll them out across services.' For example, the report suggests providing annual health checks to those with learning disabilities or mental health problems to alleviate some of the pressure felt by GPs in treating their patients.
Royal College of GPs disability task group chair Dr Charles Sears, who was involved in a pilot of an annual health check, says there are hurdles to be overcome. 'Even though the team was devoted to it, it was extremely difficult to fulfil the aims we had, ' he says.
'It involved a lot of extra time because consultations with people with learning disabilities do take longer. We just didn't have the resources to effectively carry it out.
Extra finance is essential to ensure the difference is made.'
Although extra funding does have a part to play in redressing health inequalities, Dr Russell believes other cost-neutral actions can be taken to help people with learning disabilities or mental health problems access the health service more efficiently.
The report highlights examples such as giving patients the opportunity to book double appointments to enable more efficient communication; quiet private rooms to wait in as opposed to busy reception areas that may be difficult to handle; and e-booking appointments.
'Resources will always be an issue, ' she says. 'It is not necessarily about spending more money.
Simple, small changes can make big differences to people. Just letting the receptionist know that a patient with a particular problem is coming in or putting pictures of the GPs on their doors can make the whole ordeal easier for the patient.
'We must encourage health professionals to think laterally about solving some of these problems, ' she argues.
However, one of the biggest problems highlighted by the DRC interim report - a final report is due next year - was hostile staff attitudes and discrimination. More than half of those who responded to the questionnaire said they faced discrimination when seeking and accessing primary care. Two per cent said they were not registered with a GP because they were seen as too demanding. Some had even been removed from doctors' lists.
The report found that respondents felt they were not listened to by their GP and were not given adequate time and information. Overall, listening was mentioned by 9 per cent of people with mental heath problems and by 25 per cent of people with learning disabilities.
'Often It is just a matter of confidence in dealing with the person's particular needs, ' says Dr Russell.
''People may feel intimidated or worried about how to approach those with learning disabilities or mental health problems. We have to consider how to give appropriate training. That is something we will be looking at in the investigation.' She praises the programme at London's St George's Hospital medical school for its efforts to introduce students to people with learning disabilities and help curb discrimination (see box).
But alongside best practice comes poor practice. The report highlights health promotion as an area in which people with learning disabilities and mental health problems experience inequalities.
Health promotion is high on most managers' agendas but only in terms of poverty, race, sex, age and geography, not in terms of disability status. Mr Prior says it is a question of raising the issue. 'Managers should be made aware that disability is a major cause of health inequality, ' he says.
On health check-ups, there are also inequalities. An analysis of GP data about people with learning disabilities in Wales shows that they had markedly lower health check take-up than others. Cervical smear take-up was 13 per cent compared with 84 per cent in the practices as a whole, and take-up for breast screening was 26 per cent compared to 71 per cent as a whole.
However, there is a bright side.
Other health promotion interventions such as smokingcessation advice and blood pressure recordings appeared to be offered as often, and in some cases more often, to people with mental health problems. The report points to high consultation rates and public health schemes, with incentives for GPs to explain the high rates. .
LEARNING FROM THE REAL EXPERTS
ST GEORGE'S HOSPITAL
More than 2,000 students at St George's Hospital medical school in London have trained on an award-winning programme which employs adults with intellectual disabilities as 'simulated patients'.
Students can practise communication, administration of informed consent and breaking bad news with people who can give them real feedback.
The programme won a BUPA Foundation Communication Award in 1998, and St George's has been given funding by the Department of Health to extend it to other healthcare training schools.
Alice Thacker, senior lecturer in the psychiatry of disability at St George's, who initiated the programme, says: 'As far as I am aware the simulated patient programme, using actors who actually have learning disabilities, is a world first.
'Students receive at least five hours of direct training from people with learning disabilities. So there is a distinct improvement in attitudes towards people with a learning disability.' She adds: 'Our students realise that people with learning disabilities are not passive individuals who we do things for. They have the right to control their own healthcare.
'We make an effort to teach all our staff.
Nurses, physiotherapists and radiographers get training in how to treat people with learning disabilities. It is not just GPs that need this.
People with disabilities get cancer, too.' The actors are recruited from specialised theatre companies and paid professional union rates. Ms Thacker is hoping to get funding to create a qualification across health and other industries - for example, training prison or airline staff.
www. drc-gb. org/documents/interim_ report_final. doc