To date nearly 100 families have shared with us how they have been devastated by the death of a loved one with a learning disability, due to bad practice and neglect in the health service. Our reports Death by Indifference and 74 deaths and counting have concluded that this is a result of institutional discrimination in NHS services.
We have highlighted where NHS services have failed to meet the needs of patients with a learning disability and how a lack of basic training for staff leads to delays in diagnosis and treatment, a poorer standard of care, and avoidable deaths.
But we have always felt that these deaths were just the tip of the iceberg, and our latest research, published last month, confirmed this. We now know that every year in England more than 1,200 adults and children with a learning disability are dying of causes that could be prevented.
This figure is a national estimate based on the findings of theConfidential Inquiry into premature deaths of people with learning disabilities, also published last month.
The inquiry also confirmed what we hear from the people we support time and time again – that if you have a learning disability you’ll have a far worse experience of healthcare than the general population, and can expect to die, on average, 16 years earlier.
Mencap believes that the new GP-led clinical commissioning groups(CCGs) could play a key role in ending the health inequalities faced by people with a learning disability in the NHS. These groups present a key opportunity to improve commissioning.
To support them, we have been working in partnership with the Royal College of GPs, Royal College of Nursing and a number of other bodies to produce a new charter for CCGs. It outlines practical steps they can take to ensure that services are commissioned to meet the health needs of people with a learning disability, and that as patients, their views are heard.
Our charter asks CCGs to pledge to take action on a number of key points, including ongoing learning disability awareness training for NHS staff in their area; supporting all GP surgeries to offer annual health checks to people with a learning disability; and providing evidence of what they have done to meaningfully involve patients and their families in the planning of health services.
Later this year we will release further guidance on what clinical commissioning groups can do to ensure that the health services provided in their area truly meet the needs of people with a learning disability. We will showcase good practice examples, such as the work that is going on at St George’s Hospital in Tooting, where Jim Blair, a consultant nurse in learning disabilities, supports patients every step of the way. His work facilitates better communication between staff and patients and ensures that the views of patients and carers are heard, leading to better outcomes.
The new charter for CCGs is part of Mencap’s Getting it Right campaign, which supports local campaigners, health professionals, GP surgeries, hospitals and healthcare authorities to work together to make improvements in the quality of care.
We hope all CCGs will pledge to meet the many challenges that lie ahead, and accept their important role in tackling the many health inequalities that people with a learning disability experience.
Beatrice Barleon is senior campaigns and policy officer at Mencap
By Beatrice Barleon