Institutional discrimination in the health system is unacceptable

Earlier this week, Mencap revealed that over the last decade the NHS has, appallingly, caused or contributed to the deaths of at least 74 patients with a learning disability.

As if this wasn’t troubling enough, across these 74 cases it was common that advice from the families of people with a learning disability – the people who know their loved ones' needs best – was ignored. Some health staff even assumed that the quality of life for some patients with a learning disability was so low that they were not worth saving.

These attitudes and behaviours are responsible for cultivating institutional discrimination in the NHS, and we must challenge and change these attitudes if we want to improve the quality of health care for people with learning disabilities and prevent further needless tragedies from happening.

If this isn’t tackled, the situation will only get worse as the NHS will see increasing numbers of people with learning disabilities accessing their health services due to the continuing trends of increasing survival rates among young people with complex health needs and reduced mortality rates among older adults with learning disabilities. Add to the equation the deep financial cuts that the NHS is currently facing and we have an even bigger problem.

People with learning disabilities are far more likely to experience poor health as compared to the rest of the population, yet the health care they receive is not as good as the health care that other people get. We have worked with a number of Primary Care Trusts to address these health inequalities for our Better Health, Better Metrics project, and at the moment I am working on a project called An Ordinary Life, which looks to improve the quality of life and care for children who depend on medical technology to live.

It is also important to tackle these inequalities by making information on health more widely available and accessible for people with learning disabilities themselves. Last year, we launched a new set of Easy Read materials on a range of topics that are particularly important to the health of people with learning disabilities.

There are a number of other initiatives around that can help NHS staff to better meet the needs of people with learning disabilities.

One of which is a Hospital Passport, which is designed to ensure people with learning disabilities are better supported when in hospital. It contains information that is unique to them, which should enable NHS staff to deliver personalised care, such as how they communicate, how they show pain and what medication they are on. Although we know that Hospital Passports can make a huge difference to the quality of care that people with learning disabilities receive, no health care professional has a statutory responsibility to implement them.

If you’re interested in Hospital Passports then your local Learning Disability Team can help or you can visit the EasyHealth website for Hospital Passport templates and a whole range of accessible information on health. Also, many people with learning disabilities have better experiences using health services when a Health Liaison Nurse is in place, so be sure to ask if your hospital has one.

Understandably, Mencap’s inquiry might make some people with learning disabilities and their families anxious about NHS care, but there is lots you can do to make sure you are well prepared for any GP or hospital visits. People with learning disabilities can find accessible health resources using easy words and pictures on the CHANGE website, or if you are a health professional or a family carer and you want specific information or advice, you can use the UK Health and Learning Disability Network that is free to join and supported by the Foundation for People with Learning Disabilities.