Organ Donation- do we know enough?
BBC News recently featured a video highlighting one family’s struggle to ensure that the avoidable death of their loved one, Paul Ridd, never happens again. Paul Ridd’s death in 2009 at Swansea’s Morriston Hospital was found, by an inquest, to have been contributed to by the hospital’s neglect.
Paul had learning disabilities as a result of brain damage at birth, which were not taken into account during his care. Paul went into hospital with a perforated bowel, yet he died from respiratory problems which were contributed to by a failure of supervision and inadequate examination by doctors. The Public Services Ombudsman for Wales called Paul’s treatment “dire”. This is a clear case of ‘diagnostic overshadowing’ where a patient’s symptoms are dismissed as caused by their disability rather than a physical illness. Paul’s sister succeeded in her petition to ensure that the Welsh government debate mandatory training for healthcare staff in Wales to raise awareness of how to care for patients with learning disabilities.
The Department of Health & Social Care ran a Consultation on Learning Disability and Autism Training for health and care staff in England in February 2019. This was in response to the death of 18 year old Oliver McGowan who had high-functioning autism and a mild learning disability for which reasonable adjustments were not made. Oliver told ambulance staff that he did not want anti-psychotic medicine yet he was later administered it to prevent him becoming anxious. His mother, Paula, argues that if staff had a better understanding of disabilities and autism they would have been able to adapt their communication to calm his anxiety using humour.
A further example of diagnostic overshadowing is evident in a recent report into the death of Mark Stuart, a 22 year old man with autism who died at the Royal Blackburn Hospital in 2015, which concluded that a lack of reasonable adjustments at crucial stages of his treatment contributed to his death. Mark was admitted for a partial bowel blockage and was left starving and desperately thirsty for five days prior to his death. The Director of External Affairs at the National Autistic Society stated that health care professionals did not consider Mark’s needs as an autistic man, or take into account that autistic people often need more time to understand questions, may express pain differently and can be sensitive to light, sound or touch.
The government has described health inequalities as ‘avoidable and unfair differences in health status between groups of people or communities’. In 2018 Mencap, a charity for those with learning disabilities, launched a ‘Treat Me Well’ campaign to address the unequal health treatment of those with a learning disability. They highlighted that people with learning difficulties frequently receive sub-standard healthcare. Indeed, 1,200 people with learning difficulties die an avoidable death every year. A YouGov survey of more than 500 healthcare staff found that one in four had never attended training on how to care for patients with learning disabilities. Moreover, one in three healthcare professionals thought that the quality of care received by patients with a learning disability was worse than those without.
I have a family member who has severe autism. He lives life to the fullest: he is the Beatles’ biggest fan and loves going to football matches. However, sometimes, particularly when he is distressed, he struggles to communicate. It is deeply upsetting to think that due to a lack of understanding of learning difficulties, he could potentially not receive high quality healthcare which reflects his needs.
It is essential that care staff understand what a learning disability is, and are able to make reasonable adjustments to ensure that people with learning disabilities receive the standard of health care that they are entitled to. No patient’s chances of survival in hospital should be reduced on the basis of whether or not they have a learning disability.
If you are worried about someone you care about or would like to discuss a possible clinical negligence claim please contact one of our Medical Negligence & Personal Injury lawyers on 020 7814 1200, or email us at firstname.lastname@example.org.
Eleanor is a trainee solicitor in the Medical Negligence and Personal Injury team, where she assists with claims relating to injuries arising from birth, fatal accidents, colorectal injuries and delayed diagnosis of cancer.
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