Parents, carers and disabled parents
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Valuing the lives of our disabled children

RosRos Member Posts: 12 Connected
How many people have also had this experience? I am repeatedly invited to write "Do Not Resuscitate" on my daughter's medical notes. I keep being told that asking the question is an NHS requirement. The thing is that, like her 2 sisters, she is in good health and has a normal life expectancy. Because her sisters don't have a disability, no one would dream of saying this about them. So why are they saying it about her, just because she has a disability? I feel very strongly that this is the ultimate in disability discrimination. We're not talking about someone with a limited life expectancy, or near the end of their life, we're talking about a healthy young person who happens to have cerebral palsy. I feel so strongly about it that I started this petition: https://www.change.org/p/health-secretary-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives

Replies

  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    I have had many medical treatments and have never been asked to do this. I have cerebral palsy as well. When was the last time you were asked to do this Ros?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • RosRos Member Posts: 12 Connected
    Hello Speedincaesar and sorry for the delay in replying - I've been away. I get asked this every year at my daughter's annual review. Several social workers and a couple of residential home managers have told me it's a NHS requirement to put it on the agenda. And last December when I took my daughter away on a Revitalise holiday, a nurse from the organisation rang me beforehand and asked me the same question, very apologetically, saying she knows how much it upsets people, but it's a NHS requirement that she has to ask it.
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