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CPS response to the Scottish Government’s Consultation on a Long Term Conditions Strategy

Cerebral Palsy has never had a condition-specific policy approach. We understand that there can be similarities in treatment approaches amongst long term conditions. However, we are concerned that people with CP cannot access adequate services or if they do get to see a health professional, they do not understand the condition, have no knowledge or experience of CP and therefore are unable to support the person effectively.

Cerebral Palsy Scotland are already concerned that the needs of the c.12,000 people in Scotland living with CP are not being met or understood currently. This population is invisible and too often ignored by policy makers and service providers. We are calling for this to be improved and have little confidence that grouping all long term conditions together into one policy area will do anything to improve support for people with CP.

See attached document for full survey

LTC – CPS Consultation Response July 2025

Getting my Covid-19 vaccine

In this blog, Marion talks about her experience of getting her first Covid-19 vaccination.

Hello everyone, I hope you are coping ok in this lock-down and keeping well. As much as I hated being stuck in from last March until July 31, as I was on the shielding list when most of my friends with cerebral palsy weren’t, now I have changed my mind as it meant I was in category 4 for the vaccine. I was called by my GP to attend a Saturday clinic for the vaccine for COVID-19.

I was glad to hear my appointment was at my doctor’s surgery rather than one of these massive centres which are always shown on TV of people getting their vaccines. Somehow that looks as if it would be a lot for someone who has a disability, but I’m sure they have thought it out.

I was jumping in to my doctors on Saturday as today would be a step forward to some kind of normality. Well, I hope that – you just never know what will happen next in this pandemic.

So, I went into the doctor’s room myself, leaving my mum in the waiting-room. Firstly, she asked me questions e.g. have you had the virus in the last six months, and when did you have your flu jag? After that she gave me the vaccine – it was sorer than I was expecting but it was over in a flash. I think you are better to get the jag on your better side – it doesn’t seem to be too painful if you can move your arm about.

I got the Oxford-AstraZeneca vaccine. They tell you what kind you are getting.

When I came out to the waiting room I felt very pleased that I have had the vaccine and I was like that all day. Unfortunately I took some side-effects the next day, being sick and having a sore arm. Now, although I will get my next vaccine, likely in 3 months, I will be very aware of how it might affect me afterwards.

I would recommend anyone to get the vaccine even with knowing you might get ill for a couple of days, and they just say it only lasts 48 hours. It is nothing like getting COVID-19.

I hope this blog will make you at ease getting yours.

Good luck and hopefully we can do more things in life soon once this vaccine drive gets to more of us.

Additional comment from Kirsty on getting vaccinated at QEUH,Glasgow:

“If you go to Queen Elizabeth University Hospital to get vaccinated, they have wheelchairs and someone will help push you. They will wait to take you back to the front door to get your frame, if you have a frame. They have on PPE.”

You can also read our Covid vaccines and cerebral palsy webpage, which gives general information on the vaccine roll-out for people with CP, their families and paid carers.

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.

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.

Bernie: Lockdown life

Our world has been a very different place for almost a year now due to the pandemic. In my latest blog, I am going to talk about what has kept me busy and focused throughout what has been a challenging time.

Let’s turn the clock back to last February when life was normal, I was out at my voluntary jobs twice a week while enjoying a social day too. Unfortunately, I had to take some time out due to my support worker leaving and there was nobody to step in. This was only supposed to be for a short time but it ended up being 5 weeks then the first lockdown happened so basically, I have been staying at home for a full year.

I have only been out of my house a handful of times since last March, mostly when the restrictions started to ease in the summer- getting to go for a couple of cycles was a dream but then the virus was starting to spread again and I didn’t want to take any chances so I stopped going out. It is crazy to think that I have spent the past year in the house as I am so busy- there still isn’t enough hours in the day for me!

Art has been the main thing that has kept me focused during lockdown- I have recently completed my latest collage of ‘The Wee Rainbow’ which is to show my appreciation for the NHS. I love chatting to people so a couple of months ago, I started an activity called ‘Blether with Bernie’ on my social media as I wanted to check in with people…it is so important that we connect during these times. On Christmas day, I decided to do a mini version to support people who spent the day alone.

The feeling of missing people is really starting to kick in now, zoom calls have been brilliant and I really don’t know how we would have coped without technology but it isn’t quite the same as seeing your family and friends in person. I have days where I get emotional for no reason, it just happens…remember it is okay to have off days. I try to stay positive as there are so many people facing heartbreak and my thoughts are with them all.

Online entertainment is my way of taking a break from everything – sometimes we just need a distraction. I really enjoy watching my friend Ross interview celebrities live on his website: The Ross Owen Show – such great guests…always get a laugh and I’m still loving tuning into WestWay Radio on Saturdays at 8pm as my friend Tom Urie presents his show ‘Club Tropicana’ with the best banter and songs.

This journey is still rocky and we are still not sure of when the pandemic will end but with the vaccine available now- there is a bit of hope in sight so hopefully the brighter days will be coming soon, in more ways than one. Let me finish off by telling you what I’m looking forward to doing when the restrictions are lifted- seeing my family & friends, going to live shows and presenting my art collages that I have created during lockdown. It is going to be a joy but for now, we just need to be patient and we will get through this one day.

Stay Safe Everyone!

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:

Make sure the services and support we provide are still working for you.
Help us develop new services to address new challenges that may have arisen over the last few months.
Tell key agencies like the Scottish Government or NHS about the issues faced by the CP community.
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.