am wondering whether anyone else has had this happen to them — Scope | Disability forum
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am wondering whether anyone else has had this happen to them

Welshmabinogion
Welshmabinogion Member Posts: 6 Listener
edited May 2019 in Cerebral palsy
Hi I am a mum to a 35 year old son who has quadriplegic spastic cerebral palsy due to medical negligence at his birth which cause a brain acquired injury.  I am wondering whether anyone else has had this happen.  In 2009 the NHS took away his access to continuing health care and his complex care package and we have been left without access other than paying privately.  It has now ben decided he does meet the criteria fo CHC back dated to 2016.  

Comments

  • Welshmabinogion
    Welshmabinogion Member Posts: 6 Listener
    Hi I am a new person in here but there does not seem to be a category which deals with how to access NHS Continuing Care funding unless I missed it if someone could point me in the right direction
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Welshmabinogion welcome to the community :) I am sorry to hear what you and your son have been through, some of our members may have gone through this too and can share their experiences with you.

    Sorry we do not have a category on this but there's some information from the NHS website on continuing healthcare 

    I hope this helps, please let us know if you have any questions. 
  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @Welshmabinogion welcome to the community! Sorry to hear this, I will tag our lovely Cerebal Palsy Specialist Information Ofiicer, @Richard_Scope to see if he can offer any advice :)
    Disability Gamechanger - 2019
  • Richard_Scope
    Richard_Scope Posts: 3,178 Scope online community team
    Hi @Welshmabinogion
    Good to meet you. I live with spastic quadriplegic CP too. Just so I am clear, has your son had his care package reinstated and backdated?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Welshmabinogion
    Welshmabinogion Member Posts: 6 Listener
    I now know when in 2009 the CCG took away his CHC and complex care package it was unlawful.  They took away all the therapies which maintain condition.  And it was what is known as not Couglan Compliant.  We had to fund everything for ten years 
  • Richard_Scope
    Richard_Scope Posts: 3,178 Scope online community team
    edited May 2019
    I have not heard of this happening before but that doesn't mean that it hasn't. Are you looking to try and recoup the money you spent funding for 10 years?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Welshmabinogion
    Welshmabinogion Member Posts: 6 Listener
    Yes because we fought for ten years and john was disabled by medical negligence and the nhs abdicated their statutory duty of care towards him in 2009 in the process of filling in forms to get the money back.  I am surprised there is no section on here about continuing healthcare as
  • Welshmabinogion
    Welshmabinogion Member Posts: 6 Listener
    if your needs are health then nhs meets all the costs.  Sons needs are more than social services can legally provide.  
  • Richard_Scope
    Richard_Scope Posts: 3,178 Scope online community team
    I think that you have a case. The NHS has clearly made an error and has abdicated its duty of care. Here is a Patient Advocacy service that you may find helpful.

    We also have a free helpline who may be able to advise you in the process of reclaiming your costs on 0808 800 3333
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • forgoodnesssake
    forgoodnesssake Member Posts: 415 Pioneering
    I am unclear though in that you say that your son's disability was caused by medical negligence.  So does this means that he has received a settlement through the courts and the NHS have accepted responsibility?  Or is it the case that you believe there was negligence but the NHS have not accepted responsibility and so your son has had no payment?  If it is the first case then that may explain them ceasing CHC, because they would say that the settlement should cover all his needs.  Sorry if I am mis-understanding

  • Welshmabinogion
    Welshmabinogion Member Posts: 6 Listener
    totally misunderstanding  he met the criteria for chc until he was 26 and then during what i now know was an unlawful MDT it was removed, and he was pushed over to social needs,  his condition is very severe and he has more than 13 consultants involved in his health.  Continuing healthcare is free and fully funded by the NHS.  the NHS have a statutory duty of care to everyone and they abdicated this care.  son never recieved any compensation from the NHS to relieve them of their satutory duty of care towards providing him the services, and what they bank on is unfortunately even with medical advance a lot of people with his condition die.  so if they give you say 2 million pound s to cover you for life for therapies then the NHS loses that money if the person dies.  so they promised to meet their statutory duty of care towards him and their gamble did not pay off as he did not die so removed illegally his CHC and complex care package.  

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