NICE Published Guidelines for Adults with Cerebral Palsy — Scope | Disability forum
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NICE Published Guidelines for Adults with Cerebral Palsy

Richard_Scope
Richard_Scope Posts: 3,638 Scope online community team
edited January 2019 in Cerebral palsy
Today NICE has published the final recommendations for the NHS with regards to adults with Cerebral Palsy.
Here is an overview of the recommendations:

Cerebral palsy in adults: the care you should expect

Cerebral palsy is a lifelong condition caused by a problem developing in a baby’s brain around the time of birth. It mainly affects muscles and movement but can also affect how people see, hear, communicate, understand and think. Everyone with cerebral palsy is affected differently – symptoms vary widely and the effects can range from minor problems to severe disability. Most people with cerebral palsy live well into adulthood and many have independent and active lives. Although the brain injury that causes cerebral palsy does not get worse over time, its effects on the body change, so people often need different care and support as they grow older.

We want this guideline to make a difference to adults with cerebral palsy and their families by making sure:  

  • your care and support always fits your needs and the things you want to achieve
  • you’re offered regular check-ups with your care team
  • you know how to get more help when you want it, or if your needs change
  • a good range of specialist support is available locally to provide your care.
close up of a wheelchair

Making decisions together

Decisions about treatment and care are best when they are made together. Your health and care professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.

To help you make decisions, think about:

  • What matters most to you – what do you want to get out of any therapy or treatment?
  • What are you most worried about – are there risks or downsides to treatments that worry you more than others?
  • What happens if you don’t want to have a particular treatment or therapy?
The full recommendations are available to read here:


 

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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Comments

  • SteveE
    SteveE Community member Posts: 88 Pioneering
    I made a start at looking at this and soon found reference to a "multi-disciplinary team" and wondered why, in our case, we don't have one.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    The guidelines now strongly recommend the multidisciplinary approach. There has long been a lack of joined-up thinking when providing service to adults living with CP. These guidelines are now a foundation for what we can reasonably expect.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • SteveE
    SteveE Community member Posts: 88 Pioneering
    Thanks @Richard_Scope - that clears up the mystery. I'll keep reading to see how/when such teams might be set-up and when we might hear from ours. Ta.
  • SteveE
    SteveE Community member Posts: 88 Pioneering
    Sorry - I don't get it.

    The opening words say the guidelines "[make sure] you’re offered regular check-ups with your care team" suggesting a care team exists when there isn't one now, and it doesn't say how a care team might be formed (or when).

    It gives guidelines to various professionals but how would any of those professionals know there is an issue?

    Especially if there is no professional taking the lead and when that would seem to be the primary/central requirement for caring for someone with CP.

    We feel cast aside nowadays and I can't see how these guidelines would change anything.

    Any ideas anyone?

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    edited January 2019
    I think for the purpose of the document 'Team', refers to more than one area of expertise and implies that these different areas will work closely together. My understanding is that your G.P. will have a clearer and more direct pathway to secondary treatment or services and that once referred the different specialisms will provide more holistic treatment. This is the ultimate goal I think.
    The key thing for me is that these guidelines now give people with CP a much better idea of what we can expect or demand as we are now central to the treatment decision process. It also aims to standardise services. So you can expect the same level of service and ability to access to those services where ever you are.
    I agree that up to this point many peoples experiences of care both medical and social (including my own) have been less than good. These guidelines are a positive step in the right direction provided they are adopted and adhered to.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • SteveE
    SteveE Community member Posts: 88 Pioneering
    Agreed - I just feel "we have been here before" and that good intentions, such as these guidelines, remain just that - intentions.

    Interesting that you mention "your GP" - it would be good to have a GP who knows us and a GP who knows about the kind of services appropriate for someone with CP. An annual health check with the GP would also be helpful...

    Sorry if I sound negative - isomething to do with a noticeable shrinking of support over the last few years - and if I find a health (or social care) professional taking a proactive and holistic approach then I will admit I was too pessimistic. Until then...

  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Don't apologise! You are being realistic, not pessimistic. I have gone through it too.
    I agree with your point about G.P.'s but I hope at least now any G.P. will have a process to follow.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    Hi Richard, 
    wonder if you could give me some advice please, I have hemaplegic Cerebral Palsy on my left side. it is only mild but i struggle with cooking cleaning etc cannot get in and out of the bath without assistance cannot walk very far, I had the mobility side of PIP taken away but after reapplying and assistance from my consultant have had it reinstated.  my query is when I had interview i was asked if i saw any one for my CP i don't and haven't since I was diagnosed when I was 3 although i didn't find out what was wrong with me until I was 29 i am now 43.  is there help out there for people like me? should i be seeing someone for support and help? 

    many thanks Nicola 
  • helpathand
    helpathand Community member Posts: 17 Connected
    Dear Nicola,
    I was asked the same question on my PIP - 'Who is your consultant for Cerebral Palsy?' It caused me to feel distressed that I had lost out in some way and "should" have one until I searched online and found there are none in the UK and only one in USA for adults. It would be a wonderful investment because someone might have more of an overview of what works etc. But sadly even scope itself has stopped being 'our' charity.
    I suspect that the people employed to do pip assessment were following a script.  I did not have the emotional energy to say anything but if I get another assessment in 3 years (as my paperwork says I should) will consider saying this. If you are still in contact with them for your assessment you are welcome to tell them this fact!!!

    NICE guidelines are perhaps an acknowledgement that we exist at least.
  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    I agree i even said to my mum i haven't seen anyone for my CP, I also was asked if i took medication for my spasms!! I will be reviewed again in 3 years and my situation will not of changed only the fact that my arthritis will be worse but because I work full time and have 2 children i live a normal life.  They don't seem to understand the fact that getting out of bed in a morning is a massive struggle and if it wasn't for my parents my house wouldn't be clean or we wouldn't eat properly. so frustrating!! Yes they do  read from a script with no compassion or idea what it's like to live like we do.  sorry to vent  and i am very grateful to you for coming back to me i will keep in mind what you have said for my next review 

    thank you very much xx
  • helpathand
    helpathand Community member Posts: 17 Connected
    I am glad it helps.  I agree too about the "work" = you must be able.  I was able to work 36 years and then redundancy - but my body is actually thankful as everything is hard (I am now 63) so keep it up while you can but don't get into shame or self blame if you can"t.

    My knowledge that the GOD  who created this universe knows and loves me is what can give me the ability to forgive and know He will judge and bring justice one day.
    I find a simple word of kindness sometimes really works wonders too. Wish I could become the missing consultant  sometimes as I am sure our experience needs collating somehow to help others. 
  • helpathand
    helpathand Community member Posts: 17 Connected
    Richard,
    Can you tell me who gets these and has responsibility for implementing? 
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    You are correct when you say that there aren't any specialists in CP in the UK. It is a difficult condition to develop a specialism in because no two people present with the same effects and how CP affects certain parts of the body can change daily, leading doctors to interpret presentations differently.
    I last saw an orthopaedic consultant about my CP about 30 years ago before embarking on corrective surgeries on my legs and feet. I have not seen a doctor regarding my CP since. This is why I think that guidelines for adults are a definite step in the right direction. Particularly, treatment a multi-disciplinary level and also consulting with us, the patient, before deciding on a particular treatment.


    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    I have had my left foot partially fused and just before Christmas i has a tibial transferred tuberosity and a new knee cap so still recovering.  I am due to have surgery on my right knee and will eventually have to have my left foot completely fused.  It's hard all i do is go to the hospital to see one of my consultants or for physio but i don't know any different and i just get on with it.  Saying that I get very frustrated when I am due a surgery or an injection and people say oh you will be better then no i won't the pain may ease in that joint but i will never get the use of my left side back and be strong enough to walk for miles or jog round the block. people don't understand do they!! sorry ranting again but nice to talk to someone who knows how if all feels.
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    As I understand it @helpathand, the guidelines are to be made available to healthcare professionals such as G.P.s. Implementation would fall under the remit of health commissioners and providers. It would be their responsibility to enable the guideline to be applied when exercising their medical judgement. 
    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. 
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    @Colabear21 don't apologise for having a rant. I can relate to everything you have said. I find it useful to talk it over with people in a similar situation :)
    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. 
  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    Definitely i feel much better after talking to you guys today thank you?
  • Richard_Scope
    Richard_Scope Posts: 3,638 Scope online community team
    Hey, anytime!
    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. 
  • helpathand
    helpathand Community member Posts: 17 Connected
    I have not embarked on corrective surgery as an adult because there is no health/social care pathway in my area for "non weightbearing rehabilitation" but meeting up with people who have had such things in adult hood at least could help identify the pluses and minus'.  I was also told that as I can drive a car I could not get any care  package.  These are the kind of things a consultant might have some influence over don't you thinkK
  • Colabear21
    Colabear21 Community member Posts: 8 Listener
    yes my consultant wrote me a letter to put with my second application after being told by his secretary the first time they didn't do them i asked him myself, and he was more than happy to help. But what happens in 3 years time!!! they should just live a day in my shoes and see how it feels as i am sure you will agree and understand 

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