Cerebral Palsy Scotland

Survey findings – the impact of Covid restrictions for people with CP

Findings from our latest survey show that Covid restrictions are continuing to have a negative impact on people with CP’s physical and mental health.

In February, we asked you to complete a survey to find out how lockdown was affecting people in Scotland with cerebral palsy (CP), their families and carers. These findings build on the information received from two previous surveys Cerebral Palsy Scotland carried out in May and September 2020.

You can read the full report here.

Key headlines include:

  • The negative impact restrictions are having on people’s mental health has significantly increased to affecting 60% of respondents.
  • Decline in wellbeing was not restricted to the person with CP but 44% felt that it had also impacted on other people in the family.
  • 43% of people are reporting that their physical health continues to deteriorate.
  • 63% reported that their care arrangements had still not returned to pre-Covid levels.
  • 53% feel that their family has become more isolated
  • Most people have either already been vaccinated or want to be vaccinated. Only 12% reported that they did not want to be vaccinated.
  • 82% said that they wanted everyone who lives with them and cares for them to be vaccinated as soon as possible.
  • 83% were happy with the level of support they were receiving from Cerebral Palsy Scotland, even though the imposition of restrictions has delayed input for some groups.

Impact on mental health

The strain of community services continuing to be closed, including for children the closure of schools, and the limited availability of respite or other opportunities to stay connected to their community has a greater impact for people with CP and their families than compared to the wider population due to the reliance on these services for people to be able to stay fit and well.

As restrictions have continued and particularly during the lockdown since 26 December 2020, 60% of people with CP and families reported an increased deterioration to their mental health and wellbeing. Mental health has now overtaken concerns about deterioration in physical health, which was reported by 43% of survey respondents.

Whilst 22% of families report that they have become closer, 53% feel that they have become even more isolated and whilst the restrictions have certainly impacted on the mental health of the person with CP, 44% report that they have also impacted on other people in the family.

With increased deterioration in mental health on top of increased isolation, there is a general sense within the responses of feeling unsupported and that disabled people are being forgotten and ignored.

Care arrangements

63% of respondents reported that any care arrangements they had in place previously were not yet back to the levels they were before Covid-19, which is a slight improvement from the 71% reported in September 2020. However, there remains over 41% who remain totally reliant on family carers.

Accessing healthcare

In terms of healthcare, only 25% of respondents said that they have been able to access all the support they need from health professionals and only 23% reported that equipment needs were being met.

However, 70% of respondents have been able to access healthcare either for their cerebral palsy or for other issues. The majority of this (65%) is either online or via telephone.

Cerebral Palsy Scotland continue to note with concern that evidence of decline in condition is not being recognised or understood by professionals, for example the difficulty in accessing physiotherapy, appointments postponed, and lack of access to specialists in cerebral palsy.

The findings from the February 2021 survey have been collated into a report which is being shared with Scottish Government. Cerebral Palsy Scotland is continuing to take part in discussions with Scottish Government about opportunities to support people with CP as the country moves through the coronavirus outbreak.

How Cerebral Palsy Scotland can support you during Covid

We are committed to ensuring that Cerebral Palsy Scotland continues to provide support for anyone, with any form of CP, of any age and from any area of Scotland, through our CP Connect programme.

Cerebral Palsy Scotland’s CP Connect service is offering free therapy and support to children and adults.  CP Connect is here to help in whatever way best suits you – it may be a conversation, an online chat, an onward referral, or it may be getting some virtual or in-person therapy. Find out more and sign up.

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.

Better Start – National Lottery Award

We are delighted to announce that Cerebral Palsy Scotland has received a National Lottery award from The National Lottery Community Fund over three years to launch the Better Start programme.

Chief Executive of Cerebral Palsy Scotland, Stephanie Fraser, said:

In Cerebral Palsy Awareness Month, it is wonderful to be able to share this good news for children with CP and their families. Better Start  will walk beside families who have a child with CP to help them  know how best to help their child and enable children to take part, contribute and achieve what they want to achieve. Life with CP isn’t straightforward and we are grateful to be able to provide expert help to families which is made possible thanks to National Lottery players.

National Lottery Community Fund Logo

The new programme will launch in April, and if you have a child or support a child with CP aged 2 – 14 years in the Greater Glasgow and Clyde health board area, please get in touch to find out how you can get involved.

Better Start will support you and your family to solve everyday problems to ensure children with CP are better connected and confident within their own family and school community, and are better able to take control over their lives.

The National Lottery Community Fund, Scotland Chair, Kate Still, said:

In these uncertain times our priority is to ensure that National Lottery money continues to flow to charities, voluntary sector organisations and grassroots groups.  I would like to congratulate Cerebral Palsy Scotland on their award, theirs is an important project and will support people now and in the future when they can physically come back together to make great things happen in their community.

If you would like to find out more about Better Start, please contact us on info@cpscot.org.uk  or call 0141 352 5000.

You find out more about the The National Lottery Community Fund awards here.

Help us a build a picture of the impact of Covid-19 on people with CP

Help us show the impact of Covid-19 on people with cerebral palsy and their families

We find ourselves nearly a year into living with restrictions; schools are closed, face-to-face services are reduced, and we are all staying close to home.

We know all of these things have had a huge impact on people with cerebral palsy, their families and carers, and we want to ask you to complete a survey to help us build a national picture of what life is like now for the cerebral palsy community.

Through the two surveys we carried out in May and September last year, we gained really valuable information that helped us make sure our services helped people in ways that they needed. We were also able to share the information to inform government and policy makers what life was like for you.

 

How this survey will help

We plan to use this survey to:

  1. Make sure the services and support we provide are still working for you.
  2. Help us develop new services to address new challenges that may have arisen over the last few months.
  3. Tell key agencies like the Scottish Government or NHS about the issues faced by the CP community.
  4. Tell our funders about the additional pressures people are facing so that we can secure the resources we need to help people with CP and their families.

 

How to take part

Just click on the link below to take you straight to the online survey.

Click here to go to the survey

The survey will remain open until midnight on 19 February, but 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.

The team at Cerebral Palsy Scotland really appreciate you taking the time to complete this survey. Thank you for your support.

CP Connect service awarded £5000 by The Crerar Trust

Our CP Connect service, which offers free therapy and support to children and adults with cerebral palsy during the coronavirus outbreak, has been awarded £5000 from The Crerar Trust.

CP Connect aims to help address the physical and emotional needs of people with CP at this challenging time, and help build strength, mobility and confidence.

The service is designed to help people in whatever way best suits them – it may be a conversation, an online chat, an onward referral, or it may be getting some virtual or in-person therapy. To find out more and sign up, visit our CP Connect webpage.

Commenting on the award, Virginia Anderson, Head of Fundraising and Communications at Cerebral Palsy Scotland, said:

“We would like to extend our sincere thanks to the The Crerar Trust who have provided much-needed funding for CP Connect. This is an important service that is continuing to help people with CP and their families during the coronavirus outbreak.”

Crerar Hotels operate hotels and inns based in Scotland, and more than 50% of the group’s distributable profits are donated to charities operating within areas where Crerar Hotels are based.

A wide variety of organisations recently received awards from the Trust, including those providing support across health, education, and social inclusion to people of all ages. Applications to the Trust will reopen in 2022.