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Guest post: Do you feel there are a lack of adult services for cerebral palsy?

emmalivemmaliv Posts: 17Member Connected
edited December 2016 in Guest blogs

In my experience, first as a child with cerebral palsy and today as a professional working with children with cerebral palsy (CP), services for children with CP are well established and co-ordinated, even if they may not be perfect. Unfortunately, this has not been my experience as an adult with Cerebral Palsy.

Unlike most neurological conditions, there is no one lead consultant with specialist knowledge of cerebral palsy who takes the lead with patients. My transition pathway to adult services was poor and the access to services limited. Responsibility for coordinating my care fell to my GP.

The issue with the GP becoming the gatekeeper to access to services is that it is dependent on them having sufficient knowledge and understanding of cerebral palsy to make appropriate and timely referrals and to manage pain. It also means that there is no immediate access to services during an acute episode. For example, access to physiotherapy to help control acute episodes of spasm is impossible because of the long NHS wait times and no opportunity for immediate care.

As a result of this system, care becomes reactive rather than proactive. Diagnosis and treatment is often delayed and leaves no room for preventative or long term maintenance programmes. Statistics for the number of adults who have cerebral palsy are hard to come by, but with an estimated 30,000 children in the UK having CP, it’s easy to conclude that a great many people are currently struggling within this system.

 A difficult transition for adults with cerebral palsy

After the transition to adult services, care becomes siloed specialty care, and the providers don’t always have knowledge about cerebral palsy. For example, many of the orthopaedic surgeons I have met have treated me like just another orthopaedic case. They have been unable to consider the effects of my underlying neurology when diagnosing and suggesting treatment, and they neglect to consider the impact of the treatment. Some seem to feel unable to offer advice and put everything down to the fact that I have CP. 

As a result of the lack of a lead consultant for my cerebral palsy and the difficulties accessing knowledge and services, I feel I have spent much of my adult life: 

  1. Trying to get people to acknowledge that things are getting more difficult for me (and that I am neither anaemic or depressed)

  2. Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)

  3. Not being able to access services when I need them, nor finding specialist consultants in whom I feel confident and who understand the functional impact of my difficulties.

A possible solution to the lack of adult cerebral palsy services?

These issues are likely not unique to the UK, but in some places there have been positive moves to address this. In the US for example, the Weinberg Family Cerebral Palsy Center was set up in New York in 2013 to offer dedicated transitional care for cerebral palsy. It provides integrated, coordinated, and multidisciplinary health care that includes paediatric, transitional, and adult care. It was funded by the Weinberg family to address their son’s needs as he transitioned into adult services.

The Weinberg Family Cerebral Palsy Center describes their service as providing “transitional & lifetime care” – integrated care and best treatment options by a network of adult care specialists knowledgeable about CP. I would like to see a centre like this in the UK as one possible solution and I plan to raise awareness, galvanise support, and fundraise in order to make it happen. 

In summary I feel the main issues are:

  • Lack of clear transition pathways
  • Lack of understanding of the longer term impact of living with CP
  • No individual practitioners who hold a specialised knowledge of Adults with CP
  • No co-ordinated services to allow access to treatment at key times
  • Difficulty accessing specialist knowledge

This is the early stages and there's much to be done, but if you'd like to keep up to date with my campaign and find out how you can join in, please visit my blog.

Have you experienced difficulties in transitioning to adult services? What would you like to see done? Let us know in the comments below.

Replies

  • rachelclrachelcl Posts: 34Member Connected
    My physiotherapy pretty much stopped when I was 17 - though I still do the exercises I was shown how to do when I was 12 every day, by my own volition.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @Francesca1994 Your post on loneliness and CP was so great, I just wondered what your thoughts are on adult services?
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @CerebralPerson how have you found adult services?
    Scope
    Senior online community officer
  • NoahNoah Posts: 430Member Pioneering
    edited December 2016
    I very much agree with your main points outlined,

    • Lack of clear transition pathways
    • Lack of understanding of the longer term impact of living with CP
    • No individual practitioners who hold a specialised knowledge of Adults with CP
    • No co-ordinated services to allow access to treatment at key times
    • Difficulty accessing specialist knowledge
    I have spoken to many consultants over the years and would love to find one that has specialist knowledge of Adults with CP.

    Well done raising awareness of this issue.

    I personally have found that that's very important do lots of research on your own condition and keep up to date with latest treatments etc, and that consultants respect you more when you turn up at appointments armed with research studies and explain what you looking for as an outcome and how you need their help to get there.

    Noah
  • Francesca1994Francesca1994 Posts: 11Member Connected
    Hi Sam!! I've just recieved your comment about adult services. So far I've had a rollercoaster ride with them. 3 weeks ago i had a meeting with social services because my last care agency didn't work out and i was asked to write down a list of activities I would like to do.
    I spent a good 2-3 hours on it only to recieve a phonecall off her telling me that she got the list from her email but they would have to look at in the New Year!! I've never been so upset and humiliated because I'm 22 and I just feel that my life is constantly on hold. What really angers me is that when you have those first few meetings the social workers are all over you like a rash and then the minute you're in dire straits they always manage to find ridiculous excuses as to why things can't get done and they always try and tell you how they think you should live your life when in actual fact they have no idea of what you go through on a daily basis. I think the whole adult social care system is disgusting and needs to be reviewed because in no offence to anyone on here but you have people like drug addicts who get everything but on the other hand you have people like myself and others who would do anything to get a job and earn profit that they can call their own or just totally transform their own lives just by making a few simple changes. 10 Downing Street I hope you're listening to this!
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Some really great points here!
    Scope
    Senior online community officer
  • emmalivemmaliv Posts: 17Member Connected
    Hi All, thanks so much for the comments, Really helpul. I am really serious about setting a centre specifically aimed at adults with CP. If you would like to join me I would love to have a chat and see if we can make it happen together. In the meantime please keep posting - I need all the ammunition I can get. I promise to keep my blog up to date so you can follow my progress.
  • emmalivemmaliv Posts: 17Member Connected
    @rachelcl what happens when you need additional physio? Are you able to access this?
  • emmalivemmaliv Posts: 17Member Connected
    @Noah thanks for your comment. Sounds like we have had similar experiences, unfortunately. I agree with needing to come armed with knowledge to the consultants. I am finding this very difficult at the moment because I do not have an answer. In my ideal world, the professionals who are working together would be able to communicate together to come up with options and have the opportunity to be innovative and ground breaking. I have heard of instances of this but I would like this be the norm.

    How would you like the services to be? Maybe we can share ideas together in the hope we can make them happen.



  • emmalivemmaliv Posts: 17Member Connected
    @Francesca1994 Sounds like you are really having a tough time. The frustration of wanting to work is something that I can really relate to. Do you find the same frustrations in terms of your medical care too? I hope that your email is responded in the new year and things get moving. It is so tiresome having to fight all the time, isn't it?
  • rachelclrachelcl Posts: 34Member Connected
    @emmaliv I've tried but my GP didn't think it was available.
  • dereklivderekliv Posts: 6Member Listener
    @rachelcl - that sounds pretty rubbish! How do you find your GP is in managing your care and directing you to appropriate services?
  • NoahNoah Posts: 430Member Pioneering
    edited December 2016
    Too be fair, I'm extremely lucky to to have an exceptional GP who has been incredible, and has worked very hard to help me get the best possible treatment.

    I'm very aware though of all the points that you raise I agree completely with them, and if it hadn't been for my approach of not accepting "no" for an answer when asking to try certain treatment, and a very supportive GP then I'm not sure where I would be.

    It takes very strong negotiating skills to get what treatment and care you need, unfortunately you have to fight for everything these days.

    Yes it would be nice if there were more specialists that have a better understanding of CP, and can co- ordinate necessary and appropriate treatment, and help more individuals make successfully transitions to adult services and reach their full potential.

    It important to try take ownership and control of your health needs, keeping all the doctors reports helps, and doing lots or research to help you understand all the medical terminology and try and find out the best way forward. Also make use of patient liaison services, and advocacy services where possible and try and formulate a plan, and be clear about what outcomes you are looking for.

    It sound like you working hard to try and find the right answers and solutions. What are you currently struggling to find the answer for @emmaliv ? Is it something we can help with on the Community? Or have you tried calling the Scope Helpline on 0808 800 3333 if its something that you would rather not post on a public forum. The helpline is an an excellent source of advice and has a great team of individuals who have a wide range of expertise including CP.

    I wish you all the very best, and don't give up, it will be worth the every effort in the end.


    Noah



  • rachelclrachelcl Posts: 34Member Connected
    @derekliv This was a few years ago. My GP has said he's learning about hemiplegia and CP all the time so if I needed extra physio now he might have found out where I could get it.
  • StayceStayce Posts: 275Member Pioneering
    edited December 2016
    This is a great post @emmaliv - Very thought provoking
    I agree wholeheartedly with all the bullet points you raise about adult services. I don't think the NICE guidance has helped us here much either. @Noah is also spot on with his comments about having to go armed with research and possible solutions to your own problems to your GP etc. All the services I have received that have involved a practitioner that specialises in CP have been identified by either my parents ,(when I was a child) and then later by myself as the batton of knowledge of the condition and the system is passed on. Given the complexity of the nature of CP I don't think an individual practitioner would be able to address everything.

    What I would like to see is a voluntary register established whereby practitioners from an array of different disciplines(e.g. Orthopaedic consultants,  Neurologists, physiotherapists, orthotists, Occupational therapists, clinical psychologists, alternative practitioners etc) whom have a special interest in the treatment of Cerebral Palsy could sign up to, which could be made available to both patients (under the freedom of information act) and health care practitioners. This would assist both adults with Cerebral Palsy find the correct services that we need and also assist other healthcare practitioners such as GPs to identify the correct care pathway for adults with Cerebral Palsy when that is less obvious.

    Just my thoughts :) I could go on for hours :) Great post 
    Best wishes
  • mikeep1983mikeep1983 Posts: 7Member Listener
    Couldn't agree more. I had physiotherapy when I was a child but that stopped when I was 8 due to a lack of funding. Since then I haven't had anything at all and I certainly empathise with previous comments, whilst CP isn't in itself classed as a progressive illness, a lot of the associated conditions unfortunately are.
    Mike Parris RGN
  • JadeBJadeB Posts: 62Member Courageous
    I couldn't agree more with this post. I have cp and am also a support worker for Teenagers/ young adults, many of which all have cp. i think there should be more research in adults with cp as everyone becomes an adult at some point. I personally find it really difficult when I stirugflr with certain things to understand if it's something that is due to me having cp, or just because I've gotten older. I also find that most (although there is very little) research that has been done on cp is all about the 'spastic' types. (I hate that word just for the record,) however I and many others fall into the 10 percent that have ataxic cp. a 'non spastic type.' presenting with a different set of symptoms in Most cases.  Yet there is hardly any information on this. On how I and others will be or are already affected 
  • emmalivemmaliv Posts: 17Member Connected
    @Stayce thanks for your feedback. I think a register of practitioners would be a great help. Though I don't think on its own it would solve the main issues of getting co-ordinated care. 

    great that you can go on for hours! How else would you like services to be? Would love to hear your thoughts, and maybe we can try and make the change happen.
  • emmalivemmaliv Posts: 17Member Connected
    Thanks @JadeB really helpful feedback
  • emmalivemmaliv Posts: 17Member Connected
    edited February 2017
    thanks @Noah I am trying to work with Scope to raise awareness. I am just fed up with the current state of care in the UK for adults with CP and think if I don't try to change it, it will never change. It is going to be a long road and looking for all the support I can to make it happen
  • StayceStayce Posts: 275Member Pioneering
    edited December 2016
    Thanks @emmaliv - Ican only go on for hours
  • StayceStayce Posts: 275Member Pioneering
     Thanks @emmaliv - I can only go on for hours because there is so much to be done to adult services. No, a register on its own would not solve all the issues of coordinated care but it would make considerable strides in the right direction. Coordinated care won't happen without some form of identification or mapping (via a register or some other means) of practitioners with specialisms in cerebral palsy from multiple fields of expertise. We need communities of practice to be identified, built and nurtured for coordinated care to then follow from.
    Just my thoughtsBest wishes
  • NoahNoah Posts: 430Member Pioneering
    I agree with @Stayce, that having a register where practitioners state if they have a special interest/experience in treating individuals with Cerebral Palsy would be a great step in the right direction and would most definitely assist patients and GP's when making referrals. 
  • nightjarsnightjars Posts: 1Member Listener
    My sister who has severe cerebral palsy was referred to physio by her dr months ago because of a painful hip.She is still waiting..... I t would be nice to think that she and other disabled adults are given more priority in the health servce but it means nothing. Im afraid the days of sitting back and waiting for your dr to do something are gone and Ive had to go down the private health route which is expensive and still an area where medics remain totally unfamiliar with disabilities.
  • CerebralPersonCerebralPerson Posts: 4Member Listener
    Sam_Scope said:
    @CerebralPerson how have you found adult services?

    They barely exist, sadly, as there are plenty of adults with CP!
  • htlcyhtlcy Posts: 132Member Pioneering
    Great post Emmaliz. Though I'd give my two cents (for what it's worth!!) I have hemiparesis and I have to say when I turned sixteen any support regarding the CP stopped. Took me a long time and persistence to get some help including occupational therapy(which I'd never had before...can you believe that!?) physio, neurology and pain management. I was based in hull for my university study and found their provisions much better than in other places. Perhaps it differs depending on region? Either way, I had no real transition and it would have been incredibly useful if I had.
  • Rainbow_wheelz16Rainbow_wheelz16 Posts: 30Member Community champion
    emmaliv said:

    In my experience, first as a child with cerebral palsy and today as a professional working with children with cerebral palsy (CP), services for children with CP are well established and co-ordinated, even if they may not be perfect. Unfortunately, this has not been my experience as an adult with Cerebral Palsy.

    Unlike most neurological conditions, there is no one lead consultant with specialist knowledge of cerebral palsy who takes the lead with patients. My transition pathway to adult services was poor and the access to services limited. Responsibility for coordinating my care fell to my GP.

    The issue with the GP becoming the gatekeeper to access to services is that it is dependent on them having sufficient knowledge and understanding of cerebral palsy to make appropriate and timely referrals and to manage pain. It also means that there is no immediate access to services during an acute episode. For example, access to physiotherapy to help control acute episodes of spasm is impossible because of the long NHS wait times and no opportunity for immediate care.

    As a result of this system, care becomes reactive rather than proactive. Diagnosis and treatment is often delayed and leaves no room for preventative or long term maintenance programmes. Statistics for the number of adults who have cerebral palsy are hard to come by, but with an estimated 30,000 children in the UK having CP, it’s easy to conclude that a great many people are currently struggling within this system.

     A difficult transition for adults with cerebral palsy

    After the transition to adult services, care becomes siloed specialty care, and the providers don’t always have knowledge about cerebral palsy. For example, many of the orthopaedic surgeons I have met have treated me like just another orthopaedic case. They have been unable to consider the effects of my underlying neurology when diagnosing and suggesting treatment, and they neglect to consider the impact of the treatment. Some seem to feel unable to offer advice and put everything down to the fact that I have CP. 

    As a result of the lack of a lead consultant for my cerebral palsy and the difficulties accessing knowledge and services, I feel I have spent much of my adult life: 

    1. Trying to get people to acknowledge that things are getting more difficult for me (and that I am neither anaemic or depressed)

    2. Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)

    3. Not being able to access services when I need them, nor finding specialist consultants in whom I feel confident and who understand the functional impact of my difficulties.

    A possible solution to the lack of adult cerebral palsy services?

    These issues are likely not unique to the UK, but in some places there have been positive moves to address this. In the US for example, the Weinberg Family Cerebral Palsy Center was set up in New York in 2013 to offer dedicated transitional care for cerebral palsy. It provides integrated, coordinated, and multidisciplinary health care that includes paediatric, transitional, and adult care. It was funded by the Weinberg family to address their son’s needs as he transitioned into adult services.

    The Weinberg Family Cerebral Palsy Center describes their service as providing “transitional & lifetime care” – integrated care and best treatment options by a network of adult care specialists knowledgeable about CP. I would like to see a centre like this in the UK as one possible solution and I plan to raise awareness, galvanise support, and fundraise in order to make it happen. 

    In summary I feel the main issues are:

    • Lack of clear transition pathways
    • Lack of understanding of the longer term impact of living with CP
    • No individual practitioners who hold a specialised knowledge of Adults with CP
    • No co-ordinated services to allow access to treatment at key times
    • Difficulty accessing specialist knowledge

    This is the early stages and there's much to be done, but if you'd like to keep up to date with my campaign and find out how you can join in, please visit my blog.

    Have you experienced difficulties in transitioning to adult services? What would you like to see done? Let us know in the comments below.

    Yes, totally agree about the lack  of knowledge and changing needs from childhood, to adolescence through to adulthood. I have had a functional  deterioration from mid to late teens and I'm a full time wheelchair user. I was given ops and meds. Now, in my mid 30's they told me that that wasn't the right thing to do! They have also reclassified my cp from childhood  and have told me that I have mixed cp with hypertonic and hypotonic muscles throughout my body. (Originally,  it was spastic diplegia)  I have supportive seating and was on 6 tabs of baclofen,  for several years. I have done my own research and apparently  baclofen can cause your back muscles to lose their tone... I. E your back muscles  can become  floppy. There is also quite a bit on fatigue and cp. I find this the  most difficult to deal with as it impacts on every single aspect of my life.  I can do very little and feel knackered. This includes mental fatigue as well. I think some consultants are starting to become aware of the changes, but GPs and consultants do need to be more informed. A pathway would be great  and it is vitally  needed. You are too often just left to get on with it
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