Category: News - Page 10 - Cerebral Palsy Scotland

Do you know about the United Nations Convention on the Rights of the Child?

Every child has rights and protections under international law. What does this mean for a child with cerebral palsy?

The United Nations Convention on the Rights of the Child (UNCRC) is an important international agreement that protects children around the world and gives them rights to a safe, equal and healthy life.

There are 54 articles that set out these rights and cover a huge range of issues from the right to a registered name and nationality, to education, protection from abuse and play.

Article 23 specifically sets out the rights of children with a disability:

A child with a disability has the right to live a full and decent life with dignity and, as far as possible, independence and to play an active part in the community. Governments must do all they can to support disabled children and their families.”

Children should know about their rights and have the chance to ask questions about them.

The Scottish Government has produced a guide to help children and young people understand the UNCRC.

Cerebral Palsy Scotland receives £29,500 from Global’s Make Some Noise

We are delighted to announce that Cerebral Palsy Scotland has received £29,500 from Global’s Make Some Noise to support children and adults with cerebral palsy.

Thanks to the incredible generosity of listeners across Global’s radio brands – Capital, Heart, LBC, Classic FM, Smooth, Radio X, Capital XTRA and Gold, we have received £19,584 to support our baby group in 2022/2023 and a further £10,000 to support children and adults with cerebral palsy in 2023/2024.

Thanks to Global’s support, our fortnightly baby group will restart in April, following a pause during the Covid pandemic. Run by our team of specialist therapists, the baby group is an important and much-needed space for children aged 0-2 and their families who are concerned about their child’s motor development, or who have been given a diagnosis of cerebral palsy. Baby group sessions help children develop movement to enable play, exploration and communication, and also allow parents and carers of young children to meet each other and share their experiences.

Now in its eighth year of service, Global’s Make Some Noise has supported over 400 local charities whose work has helped a total of 150,000 people across the UK. As well as supporting Cerebral Palsy Scotland, money raised has paid for food banks, befriending projects for the elderly and isolated, cancer wellbeing programmes, domestic abuse refuges, and employment training.

Emma Bradley, Director of Global Goodness at Global said:

It’s been an incredibly tough couple of years for everyone. With the cost of living continuing to increase many more people will turn to local groups for help, putting extra strain on their resources. So we’re pleased to be able to help small charities at the centre of communities and will continue to raise money and awareness for their vital work.”

You can find out more about our baby group here.

Our survey shows health services are failing people with cerebral palsy

Sixty five percent of people with cerebral palsy say health services in Scotland are not meeting their needs.

A survey carried out by us in November 2021 revealed that only 11% of people with cerebral palsy or their families said health services were meetings their needs ‘fully’ or ‘a lot’.

Forty five percent said their healthcare needs are ‘not at all’ being met, while a further 20% said their needs are being met only ‘a little’.

Get involved – support our campaign

Other key findings that emerged from the survey (see further details of the survey results):

Although regular physiotherapy is one of the most important treatments for cerebral palsy, 34% of those surveyed said they see a NHS physiotherapist less than once a year.
40% said they were using private physiotherapy – accessed through charities or paying for private treatment – to compensate for the lack of NHS care.
33% said they see an NHS occupational therapist less than once a year.

We are calling on the Scottish Government to improve healthcare services for people with cerebral palsy, and are asking for the government to develop and adopt SIGN guidelines, which would include giving adults with cerebral palsy the right to an annual review with a specialist.

Commenting on the survey findings, Cerebral Palsy Scotland CEO Stephanie Fraser, said:

“This survey highlights one of the biggest ongoing issues for people with cerebral palsy and their families – that there is a huge disconnect between the level of care and support people with CP currently receive and what is required to keep them well.

“Healthcare services for adults with cerebral palsy are of particular concern. Adults with cerebral palsy don’t get the same level of care as people with other life-long conditions. There are no dedicated cerebral palsy specialists for adults, and no joined-up healthcare pathways.

“In our survey, 86% said their transition from children’s to adults’ health services was ‘very poor’ or ‘poor’. Our therapy team regularly see adults coming to us for treatment in their 50s or 60s who haven’t been seen by a physiotherapist since they were 18.

“We want to make clear we are not criticising NHS staff who are working phenomenally hard in difficult circumstances as we emerge from the COVID pandemic. Rather we are calling on the Scottish Government to acknowledge that this is a totally unacceptable situation and asking them to lead on making the necessary investments and systemic changes to improve health care services for the cerebral palsy community. This has been a huge problem for decades but has been further exacerbated by the effects of the pandemic. People with cerebral palsy – both children and adults – deserve better.

“As a first step, we are asking the Scottish Government to develop and adopt SIGN guidelines for adults with cerebral palsy. We want these to be equivalent to the NICE guidelines for adults with CP that exist for the rest of the UK, and to include the right to an annual review with a specialist in CP. This would be a positive start in achieving parity of healthcare to that experienced by people with other long term conditions.”

Janis Love is mum to Brett Brough (22), who has diplegic cerebral palsy and is a full-time wheelchair user. Brett also has a learning disability and hearing loss. They live in Dundee.

“Brett went to a special school until he was 19. When he was at school, he had a robust coordinated support plan, and access to regular physiotherapy, rebound therapy and swimming. When he left school in March 2020, that all stopped. We haven’t had any hands-on therapy since then, and had only two or three visits from healthcare professionals which were just to check his specialist equipment.

“I feel very isolated right now. I only get support from health services for Brett once something has gone wrong, and only if I push for it. Providing such a poor service means that, as people with cerebral palsy get older, their health and wellbeing is only going to get worse, causing even more problems for the NHS.”

STV news highlighted the campaign on February 11. You can read the related news article, and watch a clip from the news below:

How you can support our campaign

You can support our campaign to improve health care services for people with cerebral palsy by writing to your local MSP.

Find your local MSP via the Scottish Parliament website
Download our template letter
If you can, personalise the letter by including information or stories highlighting why health services are not meeting your (or the person with cerebral palsy’s) needs. Citizens Advice Scotland has helpful advice and guidance on how to write a letter to an MSP.
Send your letter to your MSP in the post, or you can email them.

The impact of Covid on people with CP

Cerebral Palsy Scotland has undertaken three surveys of the cerebral palsy community to better understand the impact restrictions have had on people with CP and their families.

These surveys, carried out in May and September 2020 and February 2021, show that Covid restrictions have had – and are continuing to have – a negative impact on the physical and mental health of people with cerebral palsy.

Key findings from the February 2021 survey showed:

60% of respondents said restrictions had had a negative impact on their mental health
43% of people reported that their physical health had deteriorated
Decline in wellbeing was not restricted to the person with CP – 44% felt that it had also impacted on other people in the family
53% felt that their family has become more isolated

We have used these survey findings to support the CP community in two ways:

To highlight and raise awareness of the impact of Covid restrictions on the CP population with the Scottish Government, NHS, University studies and umbrella bodies such as Neurological Alliance of Scotland and the Health and Social Care Alliance
At Cerebral Palsy Scotland we have used the findings to guide us on how to adapt our services to better support people with cerebral palsy and their families during the Covid outbreak, as well as to help us secure additional funding during this crisis.

Full survey findings

Adult CP Hub present ‘Midweek Matters’

An opportunity to participate in online speaker events exploring topics related to cerebral palsy and disability, hosted by our friends at Adult CP Hub.

Adult CP Hub, the charity that promotes better medical services for people with cerebral palsy, are hosting weekly Zoom meets every Wednesday from 2 February between 6.30pm-8.00pm.

Adult CP Hub have lined up presentations and speaker events with experts from all walks of life, exploring topics that matter to us all. There will also be an opportunity to ask questions and explore the topic in detail from within the safety of the Adult CP Hub community.

2 February – Relationships, sexuality, desirability and disability

The first event will take place on Wednesday 2nd February at 6.30pm exploring the issues of relationships, sexuality, desirability and disability, in collaboration with the brilliant team behind the #UndressingDisability campaign, Enhance the UK.

Together with the charity CEO Jennie Williams and Damian Weatherald, campaign manager and Undressing Disability podcast co-host, the session will explore topics such as identity, body image, online dating and much more. This is an interactive event, where participants will be able to ask questions and share their experiences.

This is a free event, but participants are kindly asked to register to attend.

Upcoming events

Timetable of future themes and speakers is below. Please follow Adult CP Hub on Facebook and Twitter for further information.

9 Feb: Reflect and explore with our community
16 Feb: Speaker event – Scarlett Murray
23 Feb: Reflect and explore with our community
2 March: Speaker event – Siobhan Fitzpatrick, Paralympian
9 March: Reflect and explore with our community
16 March: Speaker event – Taya_in_training
23 March: Reflect and explore with our community
6 April: Speaker event – Carrie-Anne Lightly, Accessible
13 April: Reflect and explore with our community
20 April: Speaker event – Emily Yates, travel writer and disability campaigner
27 April: Reflect and explore with our community