THE LAST WORD
Getting it right for people with a learning disability
With the prospect of financial restraints looming, it is more important than ever to safeguard the rights of a group that is one of the most marginalised in our society, says Mark Goldring
Last month, Mencap heard first hand from doctors and nurses that people with a learning disability receive a poorer standard of healthcare than the rest of the population(ii)
. Mark Goldring is chief executive, Mencap T
here are over 1.5 million people with a learning disability in the UK. People
with a learning disability find it harder than others to learn, understand and communicate. They also have poorer health outcomes than the rest of the population, being at higher risk of illnesses such as heart disease, epilepsy and diabetes. Research has shown that they are 58 times more likely than others to die before their 50th birthday(i)
. By law, all healthcare
professionals must ensure that people with a learning disability have access to good quality healthcare by making reasonable adjustments where necessary.
These adjustments are often relatively straightforward and needn’t be costly, for example allowing more time in a consultation or making the effort to involve family members and carers in decisions about treatment. All too often, however, people with a learning disability suffer poor health outcomes because these adjustments are not made.
Of the 1,000 doctors and nurses we surveyed, one third felt that people with a learning disability are discriminated against in the NHS and the same proportion had witnessed a person with a learning disability being treated with neglect or a lack of dignity or receiving poor care.
In too many cases, this inadequacy of care results from a lack of awareness and training. More than a third of those surveyed said they had not been trained in how to make reasonable adjustments.
Over half of doctors and more than two thirds of nurses said they needed specific guidelines on how care and treatment should be adjusted to meet the needs of those with a learning disability.
That so many healthcare professionals recognise the gaps in their own training and the need for specific guidelines indicates a need for urgent action if we are to avoid more tragic cases like those included in Mencap’s 2007 report Death by indifference(ii)
.
It is unacceptable that the increased risk of certain illnesses among people with a learning disability, together with difficulties in communication, are compounded by indifference, lack of awareness and
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decision-making based on false assumptions about someone’s quality of life.
The challenge now is to make sure this is inequality is redressed by specific training, increased awareness and a sea change in attitudes towards learning disability.
Mencap recently launched its Getting it right campaign, calling on health authorities to sign up to a charter that sets out the measures needed to ensure that people with a learning disability have access to good quality healthcare.
The charter was developed together with several of the medical Royal Collegesand is accompanied by comprehensive guidance on how to achieve nine key points that we hope will make real changes and save lives.
We are calling on health authorities to lead the way by signing up to the charter and committing to work towards fulfilling these nine goals.
It is not enough to wait until presented with a patient with a learning disability to start thinking about how their needs can be met. Annual health checks can pick up problems before they worsen, while hospital passports provide NHS staff with vital information about a person at their very first contact.
If mental capacity laws are properly understood, they can be applied more swiftly, saving
valuable time. If information is available in an accessible form, the likelihood of a patient being distressed by the hospital setting is lessened.
All these points are addressed by our charter and the sooner hospitals and individuals put them into practice, the easier it will be to ensure that people with a learning disability get the treatment they need and that healthcare professionals are confident in making this happen.
The number of people with learning disability in the UK is growing by around three per cent every year. A cut in available funds for health services is not an excuse for slow progress or continued indifference. The measures we take now must reflect the urgency of the situation and the imperative to avoid any more unnecessary deaths.
Signing up to the Getting it right charter is just the start. It is a commitment to helping challenge attitudes, defend rights and ensure that people with a learning disability always receive the healthcare they are entitled to.
Indifference and lack of awareness should never be the cause of death of someone with a learning disability.
(i) Hollins S, Attard MT, von Fraunhofer N, Sedgwick P. Mortality in people with learning disability: risks, causes, and death certification findings in London. Developmental Medicine & Child Neurology. 1998; (40): 50-6. (ii) ICM Research surveyed a sample of 1084 doctors and nurses online between 25.05.10 and 07.06.10
Jul/Aug 10
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