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The NHS must accelerate its reforms on treating learning disabled patients
Five years on from our shocking report into the discriminatory treatment of learning disabled people, little is different
Specialist nurses and regular health checks could help improve care for people with learning disabilities. Photograph: Christopher Furlong/Getty Images
When Mencap published its Death by Indifference report in 2007 it sent shockwaves through the health sector. The study contained damning evidence that people with a learning disability were dying unnecessarily due to institutional discrimination in the NHS. Such was the strength of the report it triggered an independent inquiry and an investigation by the parliamentary and health service ombudsman.
Despite these welcome initiatives, five years on from the publication we continue to hear heartbreaking stories of unnecessary pain and death. These cases form the basis of our report published on Wednesday , Death by Indifference – 74 Cases and Counting, which looks at progress that has been made in the NHS. Sadly, it finds that the NHS has still not got to grips with treating people with a learning disability and is putting the lives of patients at risk.
Prejudice, ignorance and indifference as well as failure to abide by disability discrimination laws still feature too frequently in the treatment of patients with a learning disability. This is illustrated by the case of Alan MacDonald, who died suddenly in Lister hospital, Hertfordshire, in 2009 after being admitted with stomach cramps. From the time MacDonald was admitted, his family felt that they had "to beg" staff to treat him, only to be met with what they described as "hostility". In a society that prides itself on its universal healthcare system, such treatment is incomprehensible.
We know that regular health checks for people with a learning disability, training for healthcare staff and the appointment of specialist nurses greatly improve health outcomes. Indeed, successive governments have accepted the recommendations of the independent inquiry, which called for these measures. But, as our report shows, efforts to implement them have been slow and in some cases non-existent. Policy may have been changed but practice must follow.
For the most part, health professionals do an incredible job and want the best for each patient – we take heart that more than 200 healthcare organisations have signed up to Mencap's Getting it Right charter – but where progress has been made, it has been patchy or has come about as the result of the avoidable death of a learning disabled patient.
How many people must die before the service takes this issue seriously? At a time when the NHS is going through changes there's a risk that the progress made will be lost, and the health needs and human rights of people with a learning disability left unheeded.
• Mark Goldring is chief executive of Mencap