People with learning disabilities still suffer discrimination from the NHS, and this has contributed to the deaths of at least 74 patients in recent years, an investigation has claimed.
The investigation, by The Guardian newspaper and learning disability charity Mencap, identified the cases of 74 people with a learning disability who died while in NHS care, 59 of which were in the past 5 years. It also highlighted a further 17 serious incidents. Families of the patients involved allege that hospital blunders, poorly-trained staff and indifference are to blame. Mencap also recently called for the reopening of the case into the death of Kirsty Pearce, who had a learning disability and complex health needs, at Basildon Hospital in Essex in 2003.
This call was made after an inquest into her death, where the coroner's expert witness, Dr Ian Maconochie, of St Mary's Hospital, London, concluded that "the delay in her [Kirsty] getting the sort of treatment required for her from the outset of her presentation contributed to her death". The charity has long campaigned for an end to discrimination in the NHS and to ensure that people with a learning disability receive the same quality of care as the rest of the population. This has included its 'Death by indifference' report in 2007.
To combat this, Mencap is calling for:
- Annual health checks to become a permanent part of the GP contract to ensure early detection of health conditions, not agreed on an annual basis as now
- All health professionals to act within the law and get training around their obligations under the Equality Act and Mental Capacity Act so that they can put this into practice when treating patients with a learning disability
- Regulatory bodies, such as the General Medical Council, should conduct rigorous investigations and deliver appropriate sanctions where health professionals clearly failed in their obligations to patients with a learning disability
- The NHS complaints process should be overhauled. It is not fit for purpose. It is time consuming and defensive and does not enable the NHS to learn important lessons quickly enough to prevent further deaths
- All hospitals should sign up to Mencap's Getting it right charter, which lists 9 key activities that Mencap believes all healthcare professionals should do to ensure that there is equal access to health.
David Congdon, Mencap's head of campaigns and policy, said: "These cases confirm that too many parts of the health service still do not understand how to treat people with a learning disability and they are an appalling catalogue of neglect and indignity. "The [Guardian] article shows that health professionals are still making the same errors that we highlighted in our 'Death by indifference' report.
These include ignoring crucial advice from families, failing to diagnose serious illness, assuming that the quality of life of some individuals is so poor that their lives are not worth saving and failing to recognise pain and distress. In some cases this also has meant failing to provide the most basic nursing care such as leaving patients dehydrated and without food. If attitudes and training aren't overhauled across the board, people will continue to die needlessly."