NICE Published Guidelines for Adults with Cerebral Palsy

Richard_Scope

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.

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:

Cerebral Palsy in adults

 

SteveE

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

@SteveE

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.

SteveE

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

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

Hi @SteveE

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.

SteveE

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

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.

Colabear21

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

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

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

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

Richard,
Can you tell me who gets these and has responsibility for implementing? 

Richard_Scope

Hi @Colabear21 and @helpathand

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.

Colabear21

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

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. 

Richard_Scope

@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

Colabear21

Definitely i feel much better after talking to you guys today thank you😁

Richard_Scope

Hey, anytime!

helpathand

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

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 

trubble

Does what I’ve read mean people with CP actually get some kind of benefits paid. My son applied some 15 years ago and because he could walk something like 400 metres without falling over he was denied, all he wanted was a blue badge as he was finding it hard to park a reasonable distance from work. He’s now 35 and like most people with a permanent disability he just gets on with it.
How do I get him to apply for,( what I think he’s entitled to) the benefits, without him thinking it’s a complete waste of time and effort 
He still lives at home with us and is costing us a fortune as his job isn’t the best of payers, but options are limited, and he likes what he does and just plods along.

Colabear21

Yes apply for PIP (was DLA) obviously it will all depend on his answers to what he can do and how far he can walk, you can ask your GP to write a letter stating what pain meds he is in if any and ask his orthopaedic consultant to do the same if he has one.  But if he lives at home and you look after him he should get something, I live alone and my parents and my partner do everything for me.  you only need to get the minimum rate of mobility to qualify for a blue badge but you may be able to get one without my nan does check with your local council.  But the system is all wrong we as people with a condition like CP a from birth shouldn't have to fight for help or a badge.  Good Luck!!!

Richard_Scope

trubble said:

Does what I’ve read mean people with CP actually get some kind of benefits paid. My son applied some 15 years ago and because he could walk something like 400 metres without falling over he was denied, all he wanted was a blue badge as he was finding it hard to park a reasonable distance from work. He’s now 35 and like most people with a permanent disability he just gets on with it.
How do I get him to apply for,( what I think he’s entitled to) the benefits, without him thinking it’s a complete waste of time and effort 
He still lives at home with us and is costing us a fortune as his job isn’t the best of payers, but options are limited, and he likes what he does and just plods along.

Hi here is our Benefits Calculator that might help you and your son work out what he may be entitled to. I agree with @Colabear21

forgoodnesssake

We (a small charity I am a trustee of) have just had a NICE consultation on the quality standards for adults with  CP sent to us for comments by 4/4/19.  It seems to be related to this but i had not heard of it anywhere else.  Sorry I cannot find a link to it on the NICE website...only a PDF they sent us. What do others know about this?

Richard_Scope

Hi @forgoodnesssake ;
I am not aware of a consultation related to the guidance. Could you email the PDF to me?

forgoodnesssake

With regard to the very short deadline on this latest consultation (opened last thursday 21st March and closes next Thursday 4th April...but requires quite a lot of reading to make sensible comment) this is the response I have had from NICE, who I rang today

"Thank you for contacting the National Institute for Health and Care Excellence (NICE) with your query about our quality standard on Cerebral palsy in adults [GID-QS10080.]

 I have liaised with a senior colleague in our Quality Standards team about your query – and they have provided this response.

 ‘The two-week period for topic engagement forms one aspect of the overall 40-week development process for quality standards, which includes a further 4 week consultation period on the draft quality standard, as set out in the process guide on the NICE website.

 We do endeavour to extend topic engagement where possible, for example should it fall over public holidays etc. We do also adopt a flexible approach, (where possible within the wider development process) if people are struggling to submit their ideas on the priority areas for improvement within the timeframe set for topic engagement. Any requests for an extension to submit comments should be sent to: [email protected] ‘"

 

forgoodnesssake

"The NHS is not compelled to act on the guidelines - which are for England only - but services are expected to take NICE recommendations into account when planning and delivering care."
I just found this in a BBC article about a different set of nice guidelines. 
Quite telling though... Basically they can be ignored as long as they are "taken into account" whatever that actually means