Michelle tells us why she fears for Oliver's future
As NHS England feels the need to remind clinical staff that having either a learning disability or Autism is not an acceptable reason to place a DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) on people without proper advanced care planning, below are some of the realities that our community are facing which scares me about the future for my son and who will advocate for him if I cannot.
In 2020 I campaigned against blanket DNACPR orders with Little Miracles Charity and they were ruled as unacceptable in May 2020 by NHS England and Baroness Campbell. This was at the height of Covid when families were receiving phone calls to place DNACPR orders on their loved ones with no advanced care planning. Three years later poor practice is continuing with Down Syndrome (among others) being given as a reason for not attempting cardiopulmonary resuscitation.
People with learning disabilities and Autism deserve better, some facts and figures below to highlight what is happening.
😢49% of deaths of people with learning disabilities and Autism were considered avoidable - 49%!!!
😢 the average life expectancy for someone with a learning disability or Autism is 62 - that’s 20 years less than the general population
😢over 50% of people with a learning disability or Autism who died did so in the most deprived areas of the country
🥲 Do Not Resuscitate orders were placed on 64% of those with learning disabilities and Autism who died - the procedures for doing so were only followed correctly 60% of the time
😢if you are any ethnicity other than white then you will die even earlier
Why do we accept this? Can you look at my son and say his life is worth less?