There was a big discussion on twitter today about why the health needs of learning disabled people are often ignored.
I agree that there is a lack of basic care and that learning disabled people deserve care which is just as good as non-learning disabled people.
I believe that one way of the many ways iin which this lack of care shows itself is in the poor provision for learning disabled people, especially those with complex conditions, at 18 plus. The rounded, co-ordinating care of the paediatrician is lost. CIPOLD says:
A striking finding of CIPOLD was the multiplicity and complexity of clinical conditions that people with learning disabilities had. The key problem was the lack of coordination of care across and between the different disease pathways and service providers. This was largely because of the way in which secondary services are organised for adults, which limits the opportunity for a holistic focus on a person’s health and for effective coordination of the various specialists involved. CIPOLD frequently reviewed the deaths of people with learning disabilities whose multiple needs were being served by different specialists, sometimes in different hospitals, with no designated or responsible coordinator for their care. This resulted in each hospital admission being micro-managed as a distinct entity, but without any consideration of the whole picture and the overall pattern of the person’s illnesses, so contributing to their vulnerability, deteriorating health and sometimes their death.
I think the provision of a medical specialism for these adults would greatly improve care and health. These specialists (adult paediatricians if you like) would also have expertise in communicating and in consent issues. They would help produce the care plan, ensuring all staff were aware if the person’s health needs.
In thinking about the poor health care given to learning disabled people I think of Connor Sparrowhawk who was in the care of a team employed by Southern Health Foundation Trust. The Trust did not think the learning disabled people in its care important enough to receive their care from staff with proper training and support. They employed psychiatrists with little knowledge of epilepsy, despite knowing that learning disabled people often have epilepsy. This, to me, is treating learning disabled as less deserving of good care, shocking in a specialist trust.
I agree with George Julian and Katherine Runswick-Cole that people with learning disabilities should expect and receive just as good care as anyone else. This includes basic care, and also accessible specialist care for additional needs.
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Norah Fry Research Centre University of Bristol March 2013 Quote from Page 65