Cerebral Palsy Scotland

Challenges are being faced by the cerebral palsy community in social care and Self-Directed Support

Between December 2023 – January 2024 we asked the cerebral palsy community in Scotland to share their experiences of social care and Self-Directed Support through completing a survey.

It was clear that many are facing a range of challenges when they access social care services and Self-Directed Support.

Read the full Survey summary

Key findings from the survey include:

  • Many adults with cerebral palsy (33% of respondents) are relying on family and unpaid carers to support them.
  • Half (50%) of respondents were dissatisfied with their experience of being assessed for social care, while 35% were satisfied.

There were a variety of reasons given for feeling dissatisfied with the assessment process, including that it was seen as too slow, overly intrusive and inflexible. Some carers felt unfairly judged by professionals who were assessing, and some people with cerebral palsy also felt misunderstood.

  • Half (50%) of respondents felt that their care package doesn’t meet their needs, while 31% felt that it does.

Reasons given by respondents for feeling that a care package didn’t meet their needs included not being awarded enough hours of care, being too limited in what they were allowed to spend the award on, and not having the right services in the community to access using the award.

  • Recruiting enough – or any – paid carers is the biggest concern amongst respondents

Specific challenges mentioned relating to recruitment included having a support budget that couldn’t be spent as staff couldn’t be recruited, the difficulty of recruiting staff when a person is awarded a small number of hours of care per week, and frequently changing staff teams impacting on care.

  • Most people feel that their paid carers have the right knowledge and skills to do the job.

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

“The findings from our survey echo very clearly what we have been hearing anecdotally for some time now from the cerebral palsy community in Scotland.

“As national discussions continue on health and social care and the proposed new National Care Service, we have already been sharing these findings with ministers and officials from the Scottish Government.

“Good social care services are fundamental to allowing those that need it to meet their basic needs, access day-to-day life, and maintain their physical and mental health. We can see the system isn’t working for many people with cerebral palsy, that a large number are still relying on family and unpaid carers to support them, and that the lack of paid carers is causing huge challenges in an already imperfect system. This is unacceptable.

“We will continue to ensure that the voices and experiences of people with cerebral palsy, their families and carers are heard at the national level, and to make the case for urgent change and improvement within these vital services.”

Read the full Survey summary

 

My views on disabled access – Faith Wright

As part of Cerebral Palsy Awareness Month, we have teamed up with Euan’s Guide to ask our content creators their views on disabled access. 

Euan’s Guide is the disabled access review website where disabled people, their families, friends and carers can find and share the accessibility of venues around the UK and beyond. The website shares thousands of experiences and is the go-to tool for many disabled people. Euan’s Guide believe in making the world more accessible one review at a time. Thousands of people use Euan’s Guide every month to find and share disabled access information. Euan’s Guide recently published their Disabled Access Review where 6,000 people gave their views on disabled access. The review found that 91% of disabled people try to find disabled access information before visiting a new place.

My views on disabled access – Faith Wright. 

What do you do beforehand to prepare for an accessible day out with your friends and family?

We try to do as much research about the venue or place as we can beforehand. Usually look for information on the websites etc if there is any sometimes we have to phone or email. Then determine if my manual or electric chair is best. Make sure I have straws!!

What information do you look for from a venue before visiting?

If they have wheelchair access or if there is stairs etc so I know if I can get in and if so which chair is most suitable. What the accessible toilets are like.

How do you feel if you know that someone with similar access requirements has visited the venue before?

Definitely puts me at ease a little and means I’m more comfortable/likely to go if I know what to expect or if I’ve heard positive feedback

How does this help you to feel more confident or prepared to go out with your friends and family?

Because I then know what to expect and have a better understanding of what obstacles I might face and how to avoid or prepare for them.

What is the most important piece of information for you when you visit a venue for the first time with your friends or family? The most important thing is if the venue actually accessible to me.

What do you think venues could do to improve your experience as someone with Cerebral Palsy? Educate themselves on what accessibly actually means and how everyone may need something different. If a problem is reported with the accessibility then they should take the time to learn, research and do better!

What is the number one thing that you would like people and venues to be aware of about cerebral palsy to help them improve their disabled access and disability awareness? We want to be treated like everyone else we are just customers like everyone else. Having access issues can really make us feel like we don’t matter and are invisible and that really affects us when we are trying to have a nice day. So please try to be patient and kind and accommodating where possible.

You can find out more about Euan’s Guide, read some access reviews or even write your own review on their website here – Euan’s Guide – Disabled Access Reviews (euansguide.com)

Read more results of the Euan’s Guide Access Survey –https://www.euansguide.com/get-involved/access-survey/

My views on disabled access – Christina MacLean

As part of Cerebral Palsy Awareness Month, we have teamed up with Euan’s Guide to ask our content creators their views on disabled access. 

Euan’s Guide is the disabled access review website where disabled people, their families, friends and carers can find and share the accessibility of venues around the UK and beyond. The website shares thousands of experiences and is the go-to tool for many disabled people. Euan’s Guide believe in making the world more accessible one review at a time. Thousands of people use Euan’s Guide every month to find and share disabled access information. Euan’s Guide recently published their Disabled Access Review where 6,000 people gave their views on disabled access. The review found that 91% of disabled people try to find disabled access information before visiting a new place.

My views on disabled access – Christina MacLean. 

What do you do beforehand to prepare for an accessible day out with your friends and family?

Travelling can be quite overwhelming and I tend to stress myself out as I struggle with the hustle and bustle. When I moved for college and university, my mum and sister would do a “test journey” with me. This would include them travelling from my flat to university for example so I could get used to the route. This made it a little easier when I had to travel on my own.

What information do you look for from a venue before visiting?

I am a young woman with mixed cerebral palsy and talipes (club foot). I also suffer from chronic migraines and trigeminal neuralgia. I do not require any walking aids but can sometimes be clumsy especially when I am tired. When going to a concert or theatre for example, I will check the layout of the venue online before booking tickets. I can sometimes find stairs difficult especially if they are steep as they may be a tripping hazard. I sometimes also check where the toilets are. I struggled at university when I did not get shown around as I did not know where the toilets were.

How do you feel if you know that someone with similar access requirements has visited the venue before?

Unfortunately, I have not been to a venue that I’ve known another person with cerebral palsy has been to. However, this would make me feel comfortable if I did.

How does this help you to feel more confident or prepared to go out with your friends and family?

I would say I am always apprehensive when going to a venue. It all depends how I feel on the day, what time I have to be there and if I need to travel. My family and friends are patient and understand that I might be feeling stressed. When I am with my friends we may get an uber together to make travelling less of a worry. My family and friends sometimes discuss a plan of what we need to do on the day, for example, get the bus, grab a coffee, go around the shops, have lunch and go to the venue. I find a routine to be extremely helpful and if it is planned out in advance I find going to a venue a bit easier.

What is the most important piece of information for you when you visit a venue for the first time with your friends or family?

I know this sounds a bit silly – but if the floor is level. Some flooring I find difficult to walk on. How steep the stairs are and where the toilets are.

What do you think venues could do to improve your experience as someone with Cerebral Palsy?

When I was at university it would have been helpful to receive a tour of the buildings I needed to attend. This would make me feel comfortable and less worried when starting.

What is the number one thing that you would like people and venues to be aware of about cerebral palsy to help them improve their disabled access and disability awareness?

That not all disabilities are visible and that we may all require different accessibility.

You can find out more about Euan’s Guide, read some access reviews or even write your own review on their website here – Euan’s Guide – Disabled Access Reviews (euansguide.com)

Read more results of the Euan’s Guide Access Survey –https://www.euansguide.com/get-involved/access-survey/

Barry’s holiday to Sandpipers Southport

As part of Cerebral Palsy Awareness Month, Barry shares his experience on a recent respite holiday to Sandpipers in Southport. Barry is currently writing his own e-book that will be published online to raise money for Cerebral Palsy Scotland.  

Who I am.

My name is Barry Smith, and I am 45 years old, with Cerebral Palsy which is a physical disability, down to me suffering from I am in a Power wheelchair, and I use an SL50 Lightwriter. I live by myself, but I get support for the things I couldn’t do for myself.

Going on a respite holiday

On the 12th of February of this year, I got a cab to Irvine railway where I booked the ramps to let me get on to the Glasgow Train by myself, I had my bag on the back of my wheelchair with everything I needed for the week in it. When I was doing this I remember I felt so happy. As soon I got off the train in Glasgow, I went for the London train before I did this I asked if could I go to first class because the staff on the train came round to ask do you want food and drink, When the person came to ask would I like anything I typed on my lighterwriter by using my big toe, this is because I hurt my fingernail one day before this and has a bandage over it, down to me doing this it is hard to type on my communication aide what I want to say to them.

When the train man came I asked if could I have a coffee and can he could put my straw into it for me. When I was on the train for about two hours, my stop was Wigan North Western then I had a sort five five-minute walk over to Avanti West to get my last train on to Southport, by this point I was feeling so happy. As soon as I got over to the next train I was told by the train man the train wasn’t on to Southport because of this we were going to put a bus service on to Southport. About an hour later, I got to Southport. As soon as I got off the bus in Southport, I made my way to Sandpipers by walking because I had been in Southport for four years, I noticed some of the shops and the pubs have closed down.

Picking the right room is a big part of having a great holiday. Here is a guide to the rooms at Sandpipers, including their many features and facilities, to help you make the ideal choice. Revitalise Sandpipers offers full board accommodation on the shores of Southport Marine Lake. Take in lovely water views, go for a dip in the hydrotherapy pool or simply enjoy the newly refurbished R Club Lounge and restaurant.

At the end of the day, retreat to your fully accessible room. All en-suites have wheel-in showers and there are also two separate bathrooms for assisted bathing with hoists and bariatric equipment, and Arjo baths.

Amenities and Accommodation

  • Heated indoor hydrotherapy pool
  • Licensed bar and entertainment area
  • Hair and therapy salon*
  • Internet access and WiFi
  • Sun terrace with balcony overlooking the Marine Lake
  • Gardens
  • Souvenir shop
  • Full board only
  • 30 single rooms
  • 4 twin rooms
  • All rooms at ground level
  • En suite accessible shower room
  • Call system
  • Television
  • Pressure relief mattresses
  • Airflow mattresses
  • Profiling beds
  • Overhead and manual hoists

You can find more information on respite holidays at Sandpipers here – Sandpipers | Revitalise

Christina’s academic journey as a person with Mixed Cerebral Palsy

As part of Cerebral Palsy Awareness Month, Christina shares her experience of education as a person with mixed cerebral palsy. 

As part of Cerebral Palsy Awareness month, I would like to share my experiences of education and the challenges I have had to face. I was diagnosed with Mixed Cerebral Palsy when I was 2, now 26. Throughout nursery and primary school, I received educational support to help with subjects like maths and English. However, this stopped before I got into high school.

Transitioning from primary into high school is difficult for both neurotypical and neurodiverse students – new friends, teachers and subjects can be overwhelming for us all but for me it felt like a nightmare. I found it difficult going between classes, corridors full of students pushing and shoving to get to class on time. I do not use any walking aids, I am VERY clumsy on my feet which means I am prone to falls. Amongst all of that, I struggled with the change of teachers due to the various teaching styles. I had maths teachers who would get frustrated and angry if I did not understand an equation and would sometimes shout. This always made me feel uncomfortable and embarrassed as some students thought I was “DUMB” and my teachers thought I did not study. I had to constantly explain “I have Cerebral Palsy” and “please be patient with me”.

This was sometimes ignored. One teacher told me… “I would never make it in life”. Most days I would go home in tears… school became such a negative place. Those comments have always stuck with me and made me doubt myself. I became extremely anxious about going to school which ended up effecting my mental and physical health. This had an effect on my exam results to which I failed most of my exams.

However, not all teachers were bad in fourth year, I had an amazing English teacher who would always make sure I understood my work and took time to go over anything if I needed it. He made the time to listen to what I had to say and was very patient – I will be forever grateful for his support. The music department was the place I felt most comfortable and where I would spend most lunchtimes. I was a member of the school choir, took part in various competitions and always enjoyed singing for our local community.

Once I finished school I went to college and then university to study music. I have a BA(Hons) in Popular Music and will hopefully receive my dissertation marks for an MScR in Music. I am looking at PhD applications and hoping to apply soon! Though education continues to be a challenge, I would like educators to receive training about the different types of Cerebral Palsy and how it may affect individuals learning abilities.

If you are a parent or carer supporting a child in education, there’s is a range of organisations you can go to for support and advice.

If you are thinking about raising awareness of cerebral palsy in your school, we have a short powerpoint presentation aimed at primary school children explaining cerebral palsy and how it affects each person differently, you can find this here.