Cerebral Palsy Scotland

How my cats help me

In this blog, Barry talks about how important his pets are to him, the impact of losing his cat Ruby, and getting new kittens.

Who I am and why I am writing this

My name is Barry Smith, and I am 44 years old, I have cerebral palsy which is a physical disability. Down to having this, I am in a power wheelchair, and I use Lightwriter which is a communication aid. I  live by myself. Four weeks ago I saw my nine-year-old cat was very ill so me and my Mum took her to the vet with one of my P.A.

The outcome of seeing the vet

When we saw the vet she saw Ruby were ill. The vet told me there were two things we could do, which are send her for blood tests or put her to sleep, she was at the vet the week before with the same thing. I asked the vet what would you do if you were me. She told me I would personally put it to sleep because she was in so much pain, As soon as I heard this I asked the vet can you do it today. I loved her so much I didn’t want her to be in any pain but could I have a few minutes to say goodbye to her. The vet were happy to do this for me. When I had a few minutes with my sweet Ruby I thanked her for being my cat and told her to go off to the sky without any pain but felt so sad. The vet asked do I want her pawprint. I said yes please and she then asked do I want her ashes back in a little cat vase I said yes please because she would be coming home with me.

Saying to to Ruby my cat and how I felt

When the vet came back into the room and my mum petted Ruby I were heart break because I knew I wouldn’t be able to pet her again. The vet put it in to send her to sleep. I were so upset and I cried which isn’t like me but I knew she had a happy life. As soon I came out of the vet I knew I wanted a little kitten but I knew I needed time to get my head around what happened to my little Ruby. As soon I got home I knew I wanted a little kitten.

Twelve days later

I got a 8 week kitten, but this time it was a little boy who was a black and white kitten, same as Ruby. As soon as I saw him I loved him but I had no name for him for five days, because I wanted a name I could say and people could understand what I was saying without me using my communication aid all the time. The next few days I play with him and I work out how I can give feed myself.

I personally remember feeling like I won the lottery because I felt so happy, but I still miss little Ruby. Then I thought to myself what do you think Ruby would tell me to do she would think “Standing by your boy kitten and give him all the love you gave me over 9 years.” Just then I said a name so everyone could understand what I was saying what was Leaon, I like that name so I called him Leaon and I can say it Leaon and I love him so much. A few days later I made up my mind to get one more. At first I was going to get a boy but got a girl and call her Amy. Now my family is my kittens and I love them so much although Ruby will always be in my heart.

Our latest policy update

At Cerebral Palsy Scotland we continue to advocate for policy change at national level, pressing for everyone with cerebral palsy to have life-long access to knowledgeable, compassionate services and support.

Over the course of 2023, Cerebral Palsy Scotland participated in a number of umbrella bodies and organisations to raise the profile of the needs of people with cerebral palsy to service providers and policy makers.

As Chair of the National Advisory Committee for Neurological Conditions, our Chief Executive has steered the committee to encourage Scottish Government to continue to support the implementation of the Framework for Action for Neurological Conditions (2020-2025) and to begin identifying future priorities once the funding for the Framework has finished. Service providers across Scotland are being encourage to self-evaluate their services against Health Improvement Scotland’s General Standards for Care and Support for People with Neurological Conditions and submit their findings to Scottish Government by the end of March 2024. Cerebral Palsy Scotland will be conducting our own evaluation of our services, (so keep any eye out in the New Year to see how you can contribute to this work).

During the year Cerebral Palsy Scotland have also worked with the Managed Clinical Network for Children with Exceptional Healthcare, to look at how children with CP transition into adult services, the Health and Social Care Alliance to support their self-management programme and the Neurological Alliance of Scotland, who, following survey work, have drawn up five recommendations regarding the need for those who support people with neurological conditions to consider mental health and wellbeing needs within services.

Our Chief Executive has met with Ministers and officials, both in Edinburgh and London to discuss health data and the identification of people with CP. Together with other cerebral palsy organisations across the UK, we continue to call for the NICE guidelines for adults with CP to be implemented. (It is possible that the self-evaluation of services in Scotland will provide evidence that this should be addressed with some urgency).

Cerebral Palsy Scotland Look to contribute to government consultations as they arise. This year we have submitted evidence to the UK government on their Disability Action Plan and the SEND Improvement Plan. We have submitted evidence to the Scottish Government regarding the development of the National Care Service, the Adult Disability Payment (mobility component) and to the Scottish Parliament’s Economy and Fair Work Committee on the employment gap for disabled people. We have met with Social Security Scotland to understand how children in receipt of disability support payments transfer to adult disability payments.

The Scottish Covid-19 Inquiry has been in touch on a number of occasions throughout the year as they are keen to include our experience of the pandemic and the impact the restrictions had on people with CP and their families in the Inquiry. We have provided written evidence, our Chief Executive gave oral organisational evidence and we are meeting with the team preparing for a set of hearings on education and certification shortly.

All of these are issues that we will be continuing to monitor during 2024 to ensure people with cerebral palsy are represented and acknowledged.

Share your experiences of social care and Self-Directed Support

Take our survey – tell us what you think about social care and Self-Directed Support for people with cerebral palsy in Scotland.

We’re ambitious for people with cerebral palsy and continue to advocate with government and policymakers for the cerebral palsy community to have life-long access to knowledgeable, compassionate services and support.

In early 2024 the Scottish Parliament will debate the health and care system in Scotland. We want to make sure that the experience of people with cerebral palsy and their families is included in these debates and raise awareness amongst MSPs of the challenges the cerebral palsy community is facing.
 
Please participate in the survey below and share your experiences. Your insights will be invaluable in shaping discussions and improvements in Scotland’s care system.

Take the survey

Celebrating our story – Disability History Month

Disability History Month is the perfect time to celebrate our charity’s history.
 
In the early 1990s a small group of families in Scotland had grown frustrated at travelling to London to get specialist therapy for their children who were living with cerebral palsy. Through their hard work, the Bobath Scotland centre opened its doors in Glasgow on 2 December 1995. You can read more about our story here.
 
Newspaper articles from the centre’s archives show the astonishing fundraising effort made by those families who successfully raised £1 million so the charity could open its doors. You can view larger images of the articles here:
Prominent among our founders was Allan Burns, who is featured in two of these articles. Without his tireless campaigning, our charity would simply not have existed. His passion, energy and commitment were central in recruiting like-minded families to the fundraising drive, sourcing funds, liaising with the NHS, finding premises and ensuring the clinical excellence of the new centre.
 
Sadly, Allan Burns passed away in 2019. Allan’s wife, Jeanette, and their daughter, Marion, are still closely involved with Cerebral Palsy Scotland.
 
During Disability History Month, we honour Allan’s contribution to Cerebral Palsy Scotland and the cerebral palsy community in Scotland, and send our gratitude to all our founding families.

Thank you – We’ve reached our Big Give target

Our Big Give Christmas Challenge closed on 5 December, and we are delighted to announce that our final total is £32,435!

It has been amazing to see the support for Cerebral Palsy Scotland. We are thrilled that your donations have helped to exceed our target of £30,000 in just seven days.

Fund a therapist – Your donation has made a difference

For over 25 years our therapists have worked alongside people with cerebral palsy, their families and carers, helping them develop practical skills which transform daily life.

Therapy is key to unlocking potential – your donations to the Big Give Christmas campaign allow us to increase our capacity, and support more people with cerebral palsy in Scotland achieve their goals.

Watch the video below to see how our specialist therapists at Cerebral Palsy Scotland will now be able to support more people with cerebral palsy – like Jack – to thrive.

We are so grateful for your ongoing support for Cerebral Palsy Scotland. Thank you.