Cerebral Palsy Scotland

Support for adults with CP

Statutory services for people with cerebral palsy are concentrated in children’s services and education. There is no specialist therapy service for adults with cerebral palsy in Scotland, apart from the adult services provided by Cerebral Palsy Scotland. This must change.

SIGN guidelines for adults with cerebral palsy

Cerebral Palsy Scotland are requesting that following the publication of the NICE guidelines for adults with cerebral palsy in January 2019 the Scottish Government enable the publication of the equivalent SIGN guidelines for adults with cerebral palsy in Scotland. The NICE guidelines aim to improve health and wellbeing, promote access to services and support participation and independent living.

Implementation of SIGN guidelines would ensure that those living with CP are treated on an equal basis as those living with other neurological conditions, such as epilepsy or Parkinson’s Disease. They would additionally give the right to an annual review with a specialist in CP to ensure this non-static condition is managed before physical changes become entrenched.

Survey results: Statutory services not meeting the needs of the majority

We surveyed the cerebral palsy community in Scotland in November 2021. A summary of the findings show that much more support is urgently needed.

When asked if NHS services are meeting your needs:

  • 45% said NHS services were ‘not at all’ meeting their needs
  • 20% said NHS services were meeting their needs ‘a little’
  • Only 11% said NHS services were meeting their needs ‘fully’ or ‘a lot’

Many are seeing key NHS services less than once a year:

  • 34% see an NHS physiotherapist less than once a year
  • 33% see an NHS occupational therapist less than once a year
  • 32% see an NHS neurologist less than once a year

Many are relying on non-NHS services:

  • 40% of respondents use private therapy, and 53% use Cerebral Palsy Scotland services.

People are experiencing poor transitions

  • Of those who had experienced a transition in the past five years (from children’s to adults’ services, or adults’ to older people’s services), 86% described the experience as “very poor” or “poor”

About the respondents:

  • Over half (58%) need ‘full’ or ‘a lot’ of support to complete daily tasks
  • Nearly half (48%) have a learning disability
  • A fifth (21%) experience a ‘great deal’ or ‘a lot’ of pain

Comments from survey respondents:

“Currently having free sessions from CP Scotland 1st one was amazing and a breath of fresh air that someone wanted to help me rather than assign me to the scrap heap”

“I have to pay for private neuro-physiotherapy twice a month and have done for many years because the NHS therapy service is so ill-equipped to meet the needs of adults with CP. This is a financial burden that I should not have to bear.”

“Physiotherapy service diminishes the second you transfer to adult services .It feels like you have to ask for physio now instead of having a regular plan of treatment”

“Child services were reasonably good. There were always regular reviews with the neurologist which was reassuring. But we didn’t transfer to the care of a neurologist in adult services – just told to go to GP if need help.”

“I had no real transition to the older people’s team and the experience was horrendous”

“I have to pay for a lot of the treatments that support my health as the NHS are unable to fund or provide them, at least not often enough”

“Cerebral Palsy Scotland is the only support we have found, and that was just this year. For 16 years, there has been no support at all.”

“Cerebral palsy is forgotten about in adults and everything is a learn to live with it approach”

“As a person who is experiencing the effects of ageing with CP I have struggled to receive appropriate NHS provision for many years. My GP service is very good but they can only offer services that exist and what services do exist are not fit to meet the needs of adults with CP. I have attended the local rehab centre many times and I have been shocked and upset at their lack of interest in me as a person and the physical issues I face due to ageing. A few staff have tried to offer treatment but the overall response to my needs has been ad hoc and lacking urgency.”

Stamp out the gap on health services for adults with CP

We are supporting the new campaign calling for the 130,000 UK adults living with cerebral palsy to stop being treated like ‘second class citizens’ due to inequality in healthcare provision.

Led by the charity Adult CP Hub, the Stamp Out the Gap campaign will run throughout March – Cerebral Palsy Awareness month – and aims to raise awareness of the need for care parity for adults with CP.

Six personalities – all of whom have CP – are supporting the campaign, including comedians Rosie Jones and ‘Lost Voice Guy’ Lee Ridley. Their faces feature on a specially designed set of mock ‘Second Class Stamps’, which highlight the need to stamp out the gap in healthcare provision.

Emma Livingstone, co-founder of Adult Cerebral Palsy Hub, explains:

“Adults with CP are treated like second class citizens when it comes to healthcare. We do not get joined-up healthcare like other adults with life-long conditions and there are no clear care pathways. At the age of 18, we are basically just told to ‘get on with it’. NICE guidelines have been developed recommending this is changed to provide joined-up healthcare with dedicated CP specialists, which is what happens for other long-term conditions. However, the guidelines have yet to be adopted across the NHS. Our campaign aims to ‘stamp out’ this gap.”

Although NICE guidelines have been developed for England, Wales and, effectively, Northern Ireland, the government has yet to adopt them across the NHS. In Scotland, no SIGN guidelines (equivalent to the NICE guidelines) even exist for adults with CP – an even further inequality in care parity.

Cerebral Palsy Scotland previously inputted into and supported the development of the NICE guidelines. Chief Executive of Cerebral Palsy Scotland, Baroness Stephanie Fraser of Craigmaddie, said:

“The answers to closing this gap already exist. There is absolutely no reason not to adopt the NICE guidelines and there is also no reason not to adapt those to SIGN guidelines for Scotland and adopt them.”

The campaign has launched an online petition calling for Care Parity for CP, asking for:

  • specialist services for adults with CP,
  • adoption of the NICE guidelines and quality standards universally across all the NHS services.

Emma Livingstone of Adult CP Hub commented on the huge impact these changes could make for people with CP and the UK as a whole:

“This change will deliver a huge impact for adults living with CP and for the NHS and the economy. We believe an investment of £20mn into joined up healthcare for adults with CP could give £422mn back to the economy in gross employment benefits. At a time when the healthcare system and economy is under unprecedented pressure, this actually offers a way to save money.”

By World Cerebral Palsy Day on 6th October, the charity hopes to have 100,000 signatures so the issue can be discussed in Parliament.

How you can support the Stamp Out the Gap campaign:

  • Sign the online petition

  • Make some NOISE and raise awareness on social media! – We want the government to hear about this. Let your friends know about the lack of care parity for adults with cerebral palsy. Ask them to sign the online petition and share your own experiences of the gap in healthcare provision for adults using the hashtag #StampOutTheGap

The mock stamps for the campaign were designed by orthoptist and illustrator Eve Lacey, who herself has cerebral palsy. The six personalities featured are: comedian Rosie Jones, comedian Francesca Martinez, actor James Moore, Britain’s Got Talent winner ‘Lost Voice Guy’ Lee Ridley, Paralympian David Smith MBE and para-Dressage rider Tegan Vincent-Cooke.

Adding her voice to the campaign, Rosie Jones, said: “I’m shocked and concerned at the gap in healthcare for people CP versus other life-long conditions. It is discrimination versus other conditions, and we must change this.”

Paralympian David Smith MBE added: “Providing joined-up healthcare means a chance for people to live healthier, happier lives, with less strain on the NHS and more opportunity to stay in employment. It doesn’t make sense to not adopt the NICE guidelines.”

You can find out more about the campaign at Adult CP Hub.

Understanding the impact of COVID-19

Please help Cerebral Palsy Scotland build up a picture of the impact of the restrictions on the lives of people with cerebral palsy.

We recognise that the current crisis has put additional pressures on people. The survey we conducted in May was extremely helpful in painting a picture of what life was like for people with cerebral palsy during lockdown. The results of the survey were widely shared with Scottish Government and the NHS, University studies and umbrella bodies such as Neurological Alliance of Scotland and the Health and Social Care Alliance. The survey was even highlighted in an article in The Times this month. At Cerebral Palsy Scotland we used the findings to guide us on how we could support people during this time. Thank you for taking part.

Now that restrictions are easing, shielding is paused and the schools have returned, we would like to check in with you again to see how people are feeling now. This will help us build up a more robust evidence and track the impact of the restrictions for people with cerebral palsy over time.

By completing this short survey, you will help us to:

• check the services and support we are providing remain relevant and helpful,
• find out if we need to adapt our current services, or develop new ones,
• inform key agencies like the Scottish Government and the NHS about the issues faced by the CP community,
• report back to organisations that fund us about and additional pressures people are facing so we can secure the resources needed to help.

The survey will remain open until midnight on Tuesday 1 September. The more information we receive and the sooner we receive it, the more able we will be to deliver effective support to everyone that needs it.

Thank you in advance for taking the time to complete the survey. We really appreciate your help.

Take the survey