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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.

Jon McFarlane: My return to therapy

What’s it really like to have in person therapy again?

Last week, I returned to Cerebral Palsy Scotland for a therapy session with Filip. I was given an allocated time, and when you arrive at the centre, you are required to call the number of reception as a means of avoiding touching the entry button. When you enter, your temperature is taken, and you have to go straight to the therapy room. These small changes made me feel safe and content.

For me, it is essential when going for therapy of any kind that you are relaxed. This ensures that your therapy is as efficient as possible.

Filip, who was the therapist for the session, spent some time at the start finding out about how general life was during this time, and what could be improved in terms of Cerebral Palsy symptoms. I have been experiencing some acute nerve pain in my back for a couple of years now. I explained this to Filip, and he came up with some exercises that I could do to stretch that particular area of my back. He also gave me some preventative measures to take to help protect my lower back. For example, he suggested that I should try and build up my upper back alongside my abdominals as a way to compensate for the weakness in the lower back.

Most importantly, though, therapy felt NORMAL. Aside from the safety measures that were implementing the session felt as uplifting as ever. Filipe took the time to understand and assess what my needs were from the session and provided me with the tools required to achieve my goals in terms of my back injury. The explanation he offered about everything I asked was great for me as I like to have an in-detail understanding of why certain things happen. I got a lot from the session, and I am confident, in time, that the exercises that were provided to me will support me in the longer term. Filip assured me that if I have any questions or difficulties he is only a phone call or email away.

Personally, the therapy session was the most positive enjoyable experience that I have experienced since the commencement of the ‘lockdown’.

I would encourage anyone that needs a therapy session and feels well enough to do so to get in contact. The centre is there to provide support to those who need it. The centre is exceptionally safe, and anyone should not be concerned about attending, given the current COVID-19 circumstances. I want to take this opportunity to express my gratitude to Filip and all the Cerebral Palsy Scotland staff for all the help that they have provided me with recently and for the past 22 years.

Welcome back!

Therapy at the Centre

The centre has had a facelift and has (finally) been re-branded fully as Cerebral Palsy Scotland.

We have installed some adaptations to the centre in order to ensure staff and your safety. (You will see that Katie has been “boxed in” with Perspex in reception!)

When you attend the centre there will be some new procedures to follow:

All visitor access is by prior appointment only.
We are asking everyone to arrive just before their appointment time and to call us on the telephone from the car park so that we can let you into the building without you having to touch door buttons and handles.
Unfortunately there are no waiting facilities in reception and we can’t offer you our usual teas/coffees/juice to welcome you in.
We will take the temperature of everyone who enters the building with a non-contact forehead thermometer.
Everyone will be asked to sanitise their hands prior to accessing any areas within the Centre. (We have sourced some branded automatic dispensers for this).
You will be shown directly to your designated therapy room which will have been thoroughly sanitised prior to their session.
The therapists will wear appropriate PPE (including face coverings and gloves) during therapy sessions.
We’re asking those that can, to wear a face covering during your time in the centre. If you don’t have a mask, we have disposable ones available.
We’re also asking that anyone attending for a therapy session only attends with one other parent/carer (unless otherwise agreed in advance) who should remain 2 metres apart from the therapists and staff whilst in the building wherever possible.

Appointments are having to be spread out so that we can ensure the rooms are fully cleaned between sessions. We have extra hand sanitiser, sprays, wipes and disposable paper towels available for your use during your visit and we are taking every precaution we can to enable us to resume our therapy sessions in person.

As expected, we do ask that you only attend the centre if you are well. If you or anyone in your household has coronavirus symptoms you must not attend the centre. The most common symptoms are new:

continuous cough
fever/high temperature (37.8C or greater)
loss of, or change in, sense of smell or taste (anosmia)

A new continuous cough is where you:

have a new cough that’s lasted for an hour
have had 3 or more episodes of coughing in 24 hours
are coughing more than usual

A high temperature is feeling hot to the touch on your chest or back (you don’t need to measure your temperature). You may feel warm, cold or shivery.

If you’ve developed symptoms (however mild) in the last 7 days, you must stay at home for 7 days from the start of your symptoms and arrange to be tested. Do not go to your GP, pharmacy or hospital.

We hope that despite everything, you will still experience a very warm welcome when you come into the centre. We are so pleased to be able to welcome people back and please do feel free to call if you have any questions about what the changes mean for you.

If you would like to enquire about appointments, please contact us HERE.

Being able to stand is so important to me

Marion talks about how she’s enjoying being able to stand in a standing frame once again.

At the start of 2020, way before the coronavirus hit us, I was told I was going to be moving into supportive accommodation. Unfortunately, due to the support organisation’s rules I will need to use a hoist instead of a stand aid for all my transfers. For me, this was very difficult to get my head around after years of being able to stand, and always been dead anti hoist… it was a bad word in my head, lol !

Also after years of my Bobath therapy and the therapists’ recommendations to promote weight-bearing I knew I needed to find myself a standing frame to assist me to remain able to stand, even though I will need to use a hoist.

So, I was straight on to Filip, my therapist at Cerebral Palsy Scotland, to ask him if he knew where I could get a suitable standing frame. He suggested a company down in England I could try, however he said there were one in the centre that I could borrow, and did I want to try it out? I jumped at the chance.

I had tried it out the week before lock-down at the centre and got on really well with it. I loved the feeling of being able to stand up straight.

Despite the centre closure, a few weeks ago, we were able to arrange with Filip for my brother to pick it up from the centre. It is now in our front room.

I have been loving using it on a regular basis, it’s so good for my back and legs. It is good for me to know that I can use it no bother, I have the strength in my legs to be able to stand. I can open up my back so that is very important to me. At the moment I’m building my time up, I’m hoping that I can be in the frame for half an hour.

When I eventually move out into my new house, I hope I can use it regularly and then I will have no worries about losing my standing ability.