Cerebral Palsy
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Adults with Cerebral Palsy Need Better Access to Health Care

Richard_ScopeRichard_Scope Community Team Posts: 2,496 Scope community team

 A new commentary, published in Mayo Clinic Proceedings, from the University of Michigan, highlights the state of scientific research, policies and health services available for adults with cerebral palsy, and advocates for improvements.

“Cerebral palsy has been thought of for a long time as a pediatric condition,” says Mark Peterson, Ph.D., M.S., FACSM, a research professor in physical medicine and rehabilitation at Michigan Medicine and the lead author of the commentary. “But, just because its onset is in childhood, the vast majority of these folks are ageing into adulthood, and we’re finding that the health care system is not adequately keeping up with the care they need as they grow older.”

Peterson, along with his Michigan Medicine co-author and department chair, Edward Hurvitz, M.D., begin the commentary explaining the growing number of adults living with cerebral palsy, the secondary health conditions they experience because of their diagnosis and updated lifespans for patients with the condition.

The authors highlight that although the number of adults with cerebral palsy is continually growing, there is a lack of:

  • Trained health care professionals to help care for their unique needs as they age,

  • Scientific research into the health, wellbeing and lifespan of adults with cerebral palsy, and

  • Coordination of health insurance options, clinical subspecialists, public programs and federal assistance for the patient population.

“We also suggest the need for health navigator groups to assist adults with cerebral palsy,” Peterson says. “These groups would help the patient population navigate the various arenas we previously described as they transition from pediatric care to adult primary care.”

Peterson and Hurvitz also encourage policy and thought leadership, as well as gleaning insights from other countries and how they are supporting the patient population by promoting continuity of care as individuals with cerebral palsy age.

“People with cerebral palsy grow up,” Peterson says. “We should be there to help them at every stage of their lives.”

See Original Study

Scope
Specialist Information Officer - Cerebral Palsy

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Replies

  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    I completely agree. I was having yearly visits to the hospital when I was a child, my foot was operated on 4 times to adjust to my growth spurts but once I was nineteen I was signed off the hospital and haven’t had any help since. I am married with 2 children and own my own house and found it difficult to bring up my children with support from my husband and in the last 5 years as arthritis has kicked in. Although my children are 22 and 19 I am struggling with having a job but in the states eyes because I’m coping ...just then I can be ignored.
  • littleacornlittleacorn Member Posts: 118 Courageous
    I understand your situation as it is same for me. As a child born with a deteriorating physical disability I saw consultants regularly but when I became an adult some 42 years ago, wow that along time! I was left to self manage. It was not until I was about 45 that my health deteriorated so much I need some some medical intervention. I need to start with trying to get pain medication as bringing up 2 children took it out of me physically. This resulted in me getting to know my GP well. He knew me and how I managed my disability. Then he retired. Everything changed and I saw a different doctor everytime I needed an appointment. This did not help with things like supporting letters for PIP etc. I felt I was being moved from pillar to post and not getting anywhere especially at a time when my pain was getting worse. I was referred to hopsital to see a consultant who had no idea what to do with me other than take xrays. It was not until I asked to speak to the practice manager after turning up for a  consultants appointment and being told it had been cancelled even though he had never seen me saying he doesnt deal with situations like me and had my GP not informed me. Before covid I began to see the same GP reguarrly or at least she was begining to get to know me but again Im back to self manging. I thing really no one can help but I will make it known if I feel I need more than I am getting.
  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    @littleacorn, so glad someone else is the same. It wasn’t until I came on here I realised that a lot of things I was struggling with was to do was my disability. Do u have back ache? That has seriously got worse over the last 4 years.
  • littleacornlittleacorn Member Posts: 118 Courageous
    Lower back pain is a daily problem for me. I also have pain in my neck. I suppose its all the wear of uneven movements over the years.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,496 Scope community team
    @Georgiacdon and @littleacorn there is a free event that is being hosted by our friends at Bobath, It is about Back and Neck Pain and Cerebral Palsy
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    @Richard_Scope thank you so much will sign up and watch with interest.
  • littleacornlittleacorn Member Posts: 118 Courageous
    Thanks @Richard_Scope I have just registered.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,045 Pioneering
    Thank you @Richard_Scope, this is so true, the support for adults with CP is not up to the standards that it should be in relation to health and wellbeing. That said, I personally, have experienced more support in this regard as an adult compared to when I was a child. If I may, I would please like to give you an example, I was under the same paediatric consultant for many years and seen on an annually basis. In the end, I felt like I became a tick box exercise and they never really resolved any of the problems I was describing. I had severe pain in my foot and they insisted there was nothing wrong. I was discharged from their clinic at the age of 18 and the one thing they did do was refer me onto a foot and ankle consultant. Since seeing this consultant, who is absolutely brilliant, I have had to have two operations on my foot and have also been diagnosed with a second condition, which I am likely to have had since my teenage years, despite at this time being told 'Sometimes we imagine pain to gain attention'. The understanding of health and wellbeing for those with CP needs much improvement as the navigate both childhood and adulthood. Thank you. 
  • forgoodnesssakeforgoodnesssake Member Posts: 326 Pioneering
    Thanks...really useful link
  • littleacornlittleacorn Member Posts: 118 Courageous
    I dont have CP but experience very simular areas of pain. I feel I have been just left to get on with life with very little medical support. It would have helped if I had been able to access things like hydrotherapy and when things are really bad some massage which you could dip in and oit of when needed.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,045 Pioneering
    edited January 19
    I am sorry to hear that you have experienced very little medical input @littleacorn, it's not good enough. People with a range of disabilities know their bodies best and with the support of health practitioners should be able to access what they need if and when they need it. I have found some practitioners don't always hear what is being said and can be quite dismissive. That said, others are fantastic, I think some of it comes down to the individual practitioner and their will to resolve issues. Please may I ask what your experiences of health practitioners are in this sense? I hope we can make progress with regard to this. Thank you. 
  • littleacornlittleacorn Member Posts: 118 Courageous
    @WestHam06 I think the locum GPs are the worst because they really have no interest in long term conditions. Especially when it js not one of their NHS targets. I think I needed to be assertive and insisit on being referred to a particular Consultant and was listened too but I dont always feel I have the energy to do this. I am sick of saying "Hear I go again!"

    I have heard said that there are lots of people my age who were left to get on with "it" all their life and that was from a manager working in the ESA team. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,045 Pioneering
    I hear what you are saying, particularly with regards to having the energy in order to fight to get our voices heard. I hope that following research papers such as the one @Richard_Scope has shared, along with people sharing real life experiences, things start to improve though I agree, it's not one their NHS targets. It's hard, but all we can do is keep pushing to ensure adults with CP get the support they need. Thank you for sharing your thoughts with me. 
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