by Sally Percival
My name is Sally Percival and I chair The National Co-production Advisory Group (NCAG) and co-chair The Think Local Act Personal (TLAP) partnership, but more importantly I am a mum to a wonderful young man with autism and a learning disability. Last week on Facebook I read about Voyage Care, a company which supports people with learning disabilities, autism, brain injuries and other complex needs, reporting that three of its services in Somerset, Derbyshire and East Sussex have been contacted by GPs to recommend that all of their clients should not be resuscitated if they contract the virus, I felt the need to vent and respond to this shameful directive. I am enormously proud of my son and I have never hidden the fact that he has autism and a learning disability, in fact we as a family have always embraced it, I have always taught my son that his autism is part of him, he just processes things differently, which doesn’t make him a lesser person. However during this pandemic of covid 19 I have begun to notice a change in attitude towards people with any kind of disability. The message is that somehow a person with a disability is not worthy of life and this GPs directive really bought those fears to life. If Alex contracted Covid19 I wouldn’t dare even mention that he had autism for fear of discrimination and that his life may not be perceived to be worth as much as the life of the person in the next bed! Historical beliefs also play into these notions of disabled people being somehow less worthy. In 1300s an English law allowed discrimination between the ‘deserving’ and ‘undeserving’ poor claiming alms. Specific reference is made to disabled people and in 1939 Hitler ordered the widespread ‘mercy killing’ of sick and disabled people. The Nazi euthanasia program, to eliminate ‘life unworthy of life,’ is code-named Aktion T4. An estimated 275,000 people are killed under this programme.
The worry is that GPs are seen as really influential people, for some they are god like and this influence like corona virus ,spreads and infects others beliefs.
It’s very upsetting to see this happening and to know that this ugly, discriminatory attitude still exists towards people with autism and a learning disability and it’s even more appalling that doctors in a medical practise would think like this. People with autism make valuable contributions to the world; Isaac Newton and Mozart are both believed to have had Autism. The notion that they would be encouraged to take out a DNR in the middle of a pandemic as if they were less equal or had less of a right to care or a right to life should horrify everyone.
Jenny Carter a member of the NCAG and has a diagnosis of autism says “It’s a disgrace that we are treated like this, we are not ill, we are people” and Vicky Buckingham another member of NCAG is encouraging people to sign a petition developed via Facebook to combat such frightening decisions. I urge you all to seek it out and sign it. https://www.change.org/p/uk-parliament-stop-covid19-dnrs-being-issued-to-elderly-disabled-autistic-learning-disabled-people.
#socialcarefuture supported this statement, with over 2300 other organisations and individuals challenging discriminatory policies.
The key principle is that each person is an individual whose needs and preferences must be taken account of individually. By contrast blanket policies are inappropriate whether due to medical condition, disability, or age. This is particularly important in regard to ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual or their family
And a joint statement from BMA, CPA, CQC, RCGP on importance of advance care planning here
My desperate hope is that this pandemic doesn’t erase the decades of hard work that independent living campaigners and personalisation have accomplished.