A shortfall in the quality of care for patients with intellectual disabilities is making a mockery of the aspiration towards parity of esteem
A person in England and Wales with intellectual disability will die about 16 years earlier than average, and more than double the number die before the age of 50. And their experience of NHS healthcare is often woefully poor.
Now, a new BMA report calls for this inequality to be urgently addressed.
BMA board of science chair Baroness Sheila Hollins says: ‘There is a scandalous disparity in the health outcomes for people with mental health problems and intellectual disability compared with those without.
‘While people with mental health problems do not have parity with physical health, the case is even worse for those with intellectual disabilities.
‘This is a vital issue for doctors to be aware of as they need to be the voice speaking up for these vulnerable patients, to ensure they get the best possible care — free from discrimination and a lack of aspiration.’
Less equal than others
Rates of epilepsy, mental health problems and respiratory illness are elevated in those with intellectual disabilities. About one-third have epilepsy, a rate 20 times higher than the general population.
Respiratory disease is the cause of death in 46-52 per cent of this group, compared with 15 per cent in the general population.
Despite these disparities, CIPOLD (the Confidential Inquiry into Premature Deaths of People with Learning Disabilities) has identified an under-diagnosis of co-morbidities, with delays in referrals, diagnosis and investigations.
CIPOLD team manager Pauline Heslop (pictured) says: ‘A particular weak spot was regarding prompt diagnosis.
‘Of the 171 people with learning disabilities who had been identified by themselves or their carers as being unwell, and who had responded promptly in reporting this to a doctor, almost a quarter (23 per cent) had one or more problems with their illness being diagnosed.’
This can be caused by diagnostic over-shadowing, which occurs when a doctor believes symptoms are to be expected in the light of a patient’s existing condition.
A lack of training may also lead doctors to feel less than confident dealing with people with intellectual disability and so limit the time spent with them.
Some patients may be fearful of contact with medical professionals and there may be a failure on the part of healthcare providers to make ‘reasonable adjustments’, as defined in the Equality Act 2010, such as having quiet waiting areas to reduce anxiety or providing information in an easily accessible format.
CIPOLD also identified that carers and family often felt sidelined and that health professionals did not listen to them.
Baroness Hollins (pictured), a professor of psychiatry of learning disability at St George’s University of London, says: ‘The healthcare system should begin to focus on the needs of the most vulnerable people first, which will have benefits for all patients because it will thus develop a service that is responsive to all complex needs.
‘While there are some signs of optimism, the talk of harsher cuts to mental health services compared to physical care services is directly against the ethos of parity of esteem.
‘There are also problems with the commissioning of mental health and intellectual disability services separately from their physical health counterparts, an absence of integrated care and gaps in healthcare training and workforce planning.’
In 2006, annual health checks for every adult with intellectual disabilities on a local authority register were introduced as a directed enhanced service (DES) in primary care in Wales, with England following in 2009.
CIPOLD has raised concerns that the quality and recording of annual health checks can vary widely.
BMA GPs committee deputy chair Richard Vautrey says: ‘The learning disability enhanced service has been extended this year to include all those 14 years and over and an expectation has been added that a care plan will be agreed with the patient and/or their carer as a result of the health check.
‘We hope this will help to enhance the care this often vulnerable group of patients receive.’
Shrewsbury GP Mary McCarthy gives her area as an example of good practice. She says: ‘Locally, there have been a number of schemes to help support this group of vulnerable patients. In my area, there is a dedicated specialist nurse who identifies these patients and their carers in the community and liaises with the GP to make sure that they are reviewed regularly.
‘Their attendance at the surgery for check-ups is facilitated and work is going on to elicit carers’ and patients’ needs by means of a questionnaire.’
Although the solution is complex, it is clear that urgent priority must be given to reducing morbidity among people with intellectual disabilities.
London consultant psychiatrist and Board of Science member Philip Steadman says: ‘We really have to grasp the nettle here. We must no longer tolerate our most needy people receiving anything below that of first-class care. The time for changing this has come.’
Read the BMA report Recognising the importance of physical health and intellectual disability — achieving parity of outcomes