Cerebral Palsy Scotland

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!

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.

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

 

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.

Jon McFarlane: Lockdown life

My name is Jon McFarlane, I am 23 years old and have cerebral palsy. I started attending Bobath when I was 2 not being able to walk. Now I have international caps in CP football and this is thanks to the hard work that the fantastic team at Cerebral Palsy Scotland do every day.

Working from home
I am currently studying for a PhD in economics at the University of Strathclyde. My research and my university are something that I am passionate about and genuinely have missed being on campus every day. Our department has been very supportive both before and during this situation and this has been important in transitioning to working from home.

I struggled to work from home at first. I enjoy working in an office environment with others. I am a people’s person and like to have a conversation at any given time.

The thought of working from my room alone, isolated, was worse than the reality. I still have regular catch-ups with my peers on Zoom and meet with my supervisors online a few times per week. Dr Grant Allan and Dr Gioele Figus have been fundamental in supporting me to adapt to working from home and I cannot thank them enough.

Cycling
Without football and golf, I started to look for new sporting ventures. I got myself a bike, got all the gears switched to the left and off I went. Cycling since lockdown has been great. When I have needed a break away from work or needed time alone to let off some steam cycling has been the ideal remedy. It provides exercise, Vitamin D and a challenge.

Reading
Another opportunity that lockdown has given me is time to relax and read for enjoyment. I have used this opportunity to learn about the brain in a lot more detail than I had previously known, and this has helped me understand cerebral palsy more. This understanding genuinely has made me feel happier and content, and without lockdown, I would never have had the time to do this.

Some helpful tips when you are stressed/sad/ anxious/ needing support

Tip 1: Don’t watch the news
The media thrive on negativity and portray negative images of the deaths and infection rates of COVID-19 etc. Although this is important to know and understand, if you are feeling down it is not a good idea to see any negativity – as my granny says “out of sight, out of mind.”

Tip 2: Use technologies available
Apps like headspace and calm are fantastic for both adults and children at helping calm the mind and guiding yourself through stressful times. Mindfulness and wellness are essential right now.

Tip 3: Reach out to your friends and family
These people are there for you. Although you might think “they have their own worries, I won’t bother them”, it is beneficial for everyone to know that everyone else is doing okay.

Tip 4: Ask for help if you need it

As I said, I’m happy to chat anyone – parent, carer, or have CP yourself! Also, Cerebral Palsy Scotland have weekly Zoom coffee and catch ups and are there at the end of the phone or the computer to help, so please reach out if you need to.

Please stay safe, look after yourselves, enjoy life as much as possible and I will see you all soon.