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World Cerebral Palsy Day

What is it? How can you make your mark?

October is usually the month of Halloween, but did you know that there is a very important day before it? Yes, that’s right – it is World Cerebral Palsy Day on the 6th! The special day is to raise awareness about the disability which affects 17 million people, around the world. There are many ways that you can show your support for World CP Day.

We all know that the world is a very different place this year due to the pandemic but we can still support Cerebral Palsy, in our own way. World CP Day is a great opportunity to tell people what the disability means and to make people aware that CP doesn’t stop anyone from achieving amazing things in life. The campaign for this year’s event is called ‘Make Your Mark’ which encourages people to share their achievements and experiences of living with CP.

There are many different ways that you can Make Your Mark:

Share your story of CP by going to the ‘World CP Day’ website and adding your story to the map
Share an achievement you have accomplished- old or new
Going green for CP by wearing the colour green or decorating your home in green as part of the #GoGreen4CP campaign which we have seen, in recent years

A big part of World Cerebral Palsy Day aims to make sure that everyone has easy access to support services, this is extra important this year. “To mark this day in support of Cerebral Palsy, I will be making my mark by creating a video to share my story of living with CP which will be posted on social media. I want to get the word out there that having CP, doesn’t stop me from doing what I want to do, yes life can be challenging but I always find a way”- Bernie Hunter

We at Cerebral Palsy Scotland would love to know what you are doing to mark World CP Day, let us know by going to our social media channels- we are ‘@CpScotland’ on Twitter & ‘@Cerebralpalsyscotland’ on Facebook.

Come on let’s raise awareness and turn the world green for Cerebral Palsy on October 6^th 2020! #MakeYourMark #GoGreen4CP

Life after lockdown – Survey Results

As restrictions have eased and some aspects of life have returned to something more like normal, how have things changed for people with CP?

Thank you to everyone who completed the survey about living with CP during the pandemic, and how it’s affecting your lives.

This is what the survey said:

76% said that the Covid-19 situation had put more pressure on family life
Over 50% said that their family was more isolated as a result of the restrictions.
71% reported that any care arrangements they had in place previously were not yet back to the levels they were pre-Covid.
55% responded that their physical health had declined
53% responded that their mental health had declined
30% of the survey classed themselves as “shielding” although only 8% reported that they had received an official letter, reflecting how vulnerable people felt as a result of their condition.
58% reported difficulty in accessing support from physiotherapy, occupational therapy and speech and language therapy with 51% only able to access healthcare services online or via telephone.
79% of families have sent their children back to school but of those who haven’t, 20% felt that their school or nursery would not be safe and 20% reported that the school or nursery could not currently accommodate their child.
82% of respondents were happy with the level of support they had received from Cerebral Palsy Scotland.

What does this tell us?

Following on from the results of the Impact of COVID for people with CP May 2020, these updated results show that people with CP and their families have found restrictions particularly difficult, despite the need to combat COVID-19.

People feel more isolated and unsupported
Care and health services have not yet been fully restored
More than half report decline in physical and mental health and wellbeing
Many cannot access the health services they need

Read the survey results, other peoples experiences and the conclusion in full here.

The previous survey results from May 2020 are available Impact of COVID for people with CP May 2020.

CP Connect – therapy and support during Covid

During the Covid outbreak, Cerebral Palsy Scotland’s CP Connect service is offering free therapy and support to children and adults.

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

Find out more and register for CP Connect.

Digby Brown

Digby Brown Solicitors support the work of Cerebral Palsy Scotland and help parents of children with cerebral palsy find answers while seeking fair compensation.

To talk to someone about your family’s circumstances please contact us, we are here to help.

Understanding the impact of COVID-19

Please help Cerebral Palsy Scotland build up a picture of the impact of the restrictions on the lives of people with cerebral palsy.

We recognise that the current crisis has put additional pressures on people. The survey we conducted in May was extremely helpful in painting a picture of what life was like for people with cerebral palsy during lockdown. The results of the survey were widely shared with Scottish Government and the NHS, University studies and umbrella bodies such as Neurological Alliance of Scotland and the Health and Social Care Alliance. The survey was even highlighted in an article in The Times this month. At Cerebral Palsy Scotland we used the findings to guide us on how we could support people during this time. Thank you for taking part.

Now that restrictions are easing, shielding is paused and the schools have returned, we would like to check in with you again to see how people are feeling now. This will help us build up a more robust evidence and track the impact of the restrictions for people with cerebral palsy over time.

By completing this short survey, you will help us to:

• check the services and support we are providing remain relevant and helpful,
• find out if we need to adapt our current services, or develop new ones,
• inform key agencies like the Scottish Government and the NHS about the issues faced by the CP community,
• report back to organisations that fund us about and additional pressures people are facing so we can secure the resources needed to help.

The survey will remain open until midnight on Tuesday 1 September. 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.

Thank you in advance for taking the time to complete the survey. We really appreciate your help.

Take the survey

Bernie: My education journey

“Don’t be afraid to move on & try something new, you’ll find your path eventually”

Education is one of the most important parts of life, everyone has a right to learn. In this blog, I will give you an insight into my educational journey as I explain the different stages of school to moving onto college and how I found my path.

Early Education: I attended Richmond Park primary, the school was especially adapted for children with additional support needs. As I have Cerebral Palsy, I really needed to go to a school which could support me in the best way possible. Richmond Park had smaller classes which I was able to cope better with- even although my Cerebral Palsy didn’t affect my learning, it did have an impact on my writing and communication, meaning that I found it hard to keep up with my school work.

The school had flexible learning methods and suitable accessible equipment to make things easier for me. I still got taught the same as if I was in a mainstream school, it was just a different set up. The school definitely gave me the best start in life, having the right support in school, I was able to achieve so much. I had a communication device from a very young age, I used it to the best of my ability and it made such a difference throughout my learning experience.

In 2006, it was time to move onto secondary school. Everyone gets nervous when starting a brand-new school and I wasn’t any different. I had to adjust to a whole new way of school life such as new subjects, new people supporting me and changes in how I recorded my work. I was lucky as most of my friends from primary moved on with me to the same secondary school. It took me a while to settle in but when I did, I was set up for the next 6 years of my life.

I enjoyed most of the subjects at school, art and computing were my favourites. I found English really challenging as I couldn’t write due to Cerebral Palsy affecting my hand movements. I had a classroom assistant who would write for me but as I use a communication device, it wasn’t the right set up for me. I found a new way to record my work independently which was using a laptop with a big keys keyboard.

In 4^th year, I studied Modern Studies at standard grade level so I had an exam at the end of it. This was my first exam so I worked so hard to prepare for it- I completed 10 past papers and 9 times out of 10, I passed. I was ready, I felt confident but unfortunately time got the better of me. The Scottish Qualifications Authority (SQA) only gave me 50% extra time which wasn’t enough for my second paper so I ended up failing the exam. It was so disappointing as I knew what I had to do.

I wasn’t going to put myself through another exam for it to happen again so I just picked to do units and build my qualifications that way. I had many achievements throughout my secondary school experience as I always tried to work to the best of my ability- I won an award in an art competition and I left school winning the ‘student of the year’ trophy which was a big surprise to me.

Further Education- In 2012, I became a college student at Glasgow Clyde College: Langside Campus. The course was called ‘Transition to Mainstream’ which my school suggested that I go on as I didn’t know what I wanted to do at that point. I liked the course but it wasn’t challenging enough for me, it was aimed at people to learn everyday skills etc. to live independently. I stuck at the course to gain more qualifications and it gave me a great work placement opportunity too.

I had a real interest for computing so I applied to go on a mainstream admin, business and computing course and it was the best move that I made. I didn’t have a communication device at the time but I still managed to complete the course successfully which gave me the chance to go on and study another computing course at a higher level.

A year later, it was time to say goodbye to the student life. I left college having gained so much more knowledge, I wanted to make good use of what I had learned so I started to volunteer for two amazing charities that assist people with additional support needs. I currently volunteer for Paragon which is a music charity and the other is Cerebral Palsy Scotland. I help create social media content, design promotional posters and write blogs.

I love my volunteering jobs and I am also getting to use the computing skills that I learned at college. I left school and I didn’t really know what I wanted to do with my future- not everyone wants to go to university or finds a career straight away so I’m lucky that I found my own path which has led me to where I am today.