NICE Quality Standards for Adults with CP

Richard_Scope

Over the last 18 months, Scope has been working with the National Institute for Clinical Excellence (NICE) and other organisations with an interest in CP to agree on what good service should look like for Adults living with CP. 

Scope supports these newly agreed and published quality standards. The standards are:

1. To refer adults with cerebral palsy to a specialist multidisciplinary team if their ability to carry out usual daily activities deteriorates or is expected to deteriorate

2. For healthcare professionals with expertise in neuro disabilities to have an annual review with adults with cerebral palsy who have complex needs

3. For adults with cerebral palsy who want support to live independently to be referred to a professional with expertise in independent living

4. For adults with cerebral palsy who want support to work to be referred to a professional with expertise in vocational skills and independent living

5.For adults with cerebral palsy who have communication difficulties to have their need for intervention assessed by speech and language therapy services.

You can read  more about the Quality Standards for Adults with Cerebral Palsy on the NICE website
 
I would like to know your thoughts.

chiarieds

I am delighted to read that Scope has been involved in working with NICE developing these guidelines for adults with CP. I read NICE's guideline NG119 (dated Jan. 2019) yesterday, on which this current quality standards is in part based, & was surprised to read over & over again that there was no evidence, some, or little evidence, to support different treatments/management in adults with CP. This made me feel that adults with CP have not had their needs fully evaluated, if indeed they have actually been seen, by specialists who ought to have been involved in their care.

Hopefully this is a way forward to address this apparent lack of care/knowledge in the adult CP population.

WestHam06

Hi @Richard_Scope, 
                                  Thank you for sharing this information with us, it is definitely a step in the right direction and let's hope it continues to develop in order to support adults with Cerebral Palsy to live their lives the way they would like too live them. By implementing these, it also will help people with CP to reach their full potential, whatever that may be. Thank you to Scope for being apart of this. Thank you. 

EricaMcD

I am pleased to see that Scope has been involved with NICE, developing these guidelines for adults with CP.  A senior health professional friend of mine within the NHS has suggested on more than one occassion that adults with Cerebral Palsy should have all their support needs sorted by the time they are adults.  I wish!  I am frequently shocked, and I know I should not be by the lack of knowledge or understanding about Cerebral Palsy health care workers included