NICE Published Guidelines for Adults with Cerebral Palsy

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?
Specialist Information Officer - Cerebral Palsy
Replies
Specialist Information Officer - Cerebral Palsy
Specialist Information Officer - Cerebral Palsy
Specialist Information Officer - Cerebral Palsy
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
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.
thank you very much xx
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.
Can you tell me who gets these and has responsibility for implementing?
Specialist Information Officer - Cerebral Palsy
Specialist Information Officer - Cerebral Palsy
Specialist Information Officer - Cerebral Palsy
Specialist Information Officer - Cerebral Palsy
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.
Specialist Information Officer - Cerebral Palsy