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Learning disability patients’ deaths are not isolated cases

I started becoming interested in treating patients with learning disabilities in general practice as a new GP about six years ago, when our practice started looking after four homes, caring for 24 patients with complex learning disabilities.

I very quickly started to realise that my holistic approach, developed from my training in a hospice, was key to providing good management.  The most important thing was not to know what drugs to use, nor manipulate them, not to know the chromosomal basis for the syndrome but to treat the patients with respect. Simple actions like looking at patients when I was talking to them or about them and involving their families and carers in their care, made a big difference to how I was received by them.

Our CCG, Nene Commissioning, has recently taken over the learning disabilities agenda with myself as the GP lead. Our team is committed to delivering better care and the principles set out in Mencap’s Getting it Right charter.

It says it as it is: simple things done well matter and will help prevent future horror stories.  I remember helping to create some of the original wording and structure of the Getting it Right messages; we wanted it punchy, to the point and easy to understand and implement.

Some doctors are worried about consulting with, or managing a patient with, learning disabilities.

Three big principles should be foremost in one’s mind: talk to the patient, consider the Mental Capacity Act, and make reasonable adjustments. Remember that The Mental Capacity Act is LAW, not optional, also The Equality Act 2010 makes it clear that reasonable adjustments are also law. 

When in hospital the most valuable thing a patient with learning disabilities can bring with them is the Hospital Passport, a quick reference guide to how to communicate effectively, what are normal actions and how can these be used to interpret what the patient is experiencing. The Passport was woefully missing when, in the original Death by Indifference report, one of the case studies pain levels were never really reviewed with him, despite changes in his behaviour which should have indicated he was suffering. With a Hospital Passport, there would be a better chance that these changes in behaviour were noted and be an example of ‘diagnostic overshadowing”, where behaviour of any type is simply put down to a patient’s learning disabilities. 

CCGs are swamped with work and if too few GPs have particular interest in learning disabilities, there is often little experience within their CCG boards.  Three ways of overcoming this are to contact a CCG that does have experience and arrange to liaise; learn from your learning disability trained nurses, who have a wealth of experience to support your decision making; and make note of the soon-to-be-published learning disabilities commissioning document, jointly authored by IHAL and the RCGP. 

Be aware that CCGs will have some responsibility over the health placements of local patients, and considering the findings of the Winterbourne View Hospital abuse scandal that is a significant responsibility.  Politicians can’t seem to decide whether or not the Annual Health Check DES is here to stay, consequently planning for practices and CCGs is more difficult when considering future work and income streams.

The Mencap publications Death by Indifference and 74 lives and counting demonstrated how a patient with learning disabilities and their carers cannot be confident of being treated appropriately in NHS hospitals. One could have been forgiven for originally thinking that Death by Indifference was 6 isolated cases, but the 74 lives and counting demonstrates that, despite our awareness of the horror stories, these tragedies are still occurring.  It is completely wrong to downplay this problem.

Progress in this area has been slow. We cannot be certain how many fewer deaths will occur by following the launch of the new online GMC resource, the Getting it Right Charter and continuing annual health checks for patients with learning disabilities.  However we do know that if we don’t take these precautions, there will be far more deaths amongst patients with learning disabilities

Tom Howesman is a GP partner in Duston Medical Centre, Northampto and GP lead in learning disabilities for Nene Commissioning CCG.