AN INCLUSIVE AGENDA FOR ALL
By Beverley Dawkins
Thursday, August 5, 2010.
There 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. Their health is generally poorer than the rest of the population, as they are 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 they give people with a learning disability good quality healthcare by making reasonable adjustments where necessary. These adjustments are often relatively straightforward and needn’t cost too much, for example allowing more time in consultations or involving family members and carers in decisions about treatment. All too often, however, people with a learning disability suffer poor health outcomes because these adjustments aren’t being made.
Mencap’s 2009 report, Reaching out, described how there are significantly fewer people from black and minority ethnic communities accessing public services, including health services. Some of the barriers they face are similar to those encountered by people with a learning disability, including a lack of accessible information, a lack of understanding and stereotypes. Others include culturally inappropriate services and a lack of social contact.
It has long been accepted that people with a learning disability from black and minority ethnic backgrounds therefore face ‘double discrimination’ when accessing public services.
Last month, Mencap asked more than 1,000 doctors and nurses about the treatment that people with a learning disability get within the NHS(ii). One third said 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 many cases, this is because of 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 and when to adjust care and treatment for people with a learning disability.
These findings, though alarming, didn’t come as a surprise to Mencap. In 2007, our Death by indifference report(ii) told the stories of six people with a learning disability who died because they didn’t get the care and treatment they were entitled to in hospital. Their already complex health needs were compounded by ignorance and indifference among those that should have cared for them. For people with a learning disability from a black or minority ethnic background, a further layer of discrimination could make it even more difficult for them and their families to make sure they get the healthcare they need.
On 21 June, 2010, Mencap launched its Getting it right campaign, calling on hospitals and health authorities to sign up to a charter that sets out the steps 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 Colleges and comes with guidance on how to achieve nine key points that we hope will make real changes and save lives.
It is not enough to wait until a patient with a learning disability needs care and treatment 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 quickly, saving valuable time. If information is available in an accessible form, the likelihood of a patient being distressed by being in hospital is reduced.
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 all people with a learning disability get the treatment they need, regardless of their ethnic or cultural background.
Beverley Dawkins is national officer for profound and multiple learning disability for the charity, Mencap.
(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