Cerebral Palsy Scotland

Can you participate in a new research project?

Adults with cerebral palsy, or another neurological condition, are being asked to participate in a new research project looking into their experience of transitions through life.

The project is a joint venture supported by the University of Dundee, NHS Ayrshire and Arran and Cerebral Palsy Scotland, and is funded by the Scottish Government.

The purpose of the research project is to gather information from individuals with a neurological condition about their lived experiences of transitions. This could include moving from Children’s to Adult Services or Secondary to Further/Higher Education or employment or socialising or relationships.

Participation involves answering 6-8 questions about your experiences of transition, and should take no more than one hour.

Please use the buttons below to access the invitation letter and information sheet for prospective participants. If you would like to participate, or get further information, please contact jenny.preston@aapct.scot.nhs.uk. 

Invitation letter     Information sheet

How Covid restrictions have affected access to public spaces

Cerebral Palsy Scotland volunteer Bernie Hunter writes about the impact that Covid-19 restrictions have had on disabled access to public spaces including pavements, shops, bars and supermarkets.

As the Covid-19 restrictions start to ease and things are becoming a bit more normal again I have been finding out about how the access world has changed slightly for people who use mobility aids, since the start of the Covid-19 rules. In this recent study, I will explain what the differences are when it comes to accessing places compared to pre-lockdown.

Over the past 16 months, life has looked a lot different for us all. We have had to get used to changes due to the pandemic. The restrictions were brought in to try and slow the spread of Covid-19 which was the right thing to do as everyone’s health has to come first. As the virus started to get under control, the hospitality industry was allowed to open but only to operate outdoors. This resulted in a lot of businesses having to set up tables and chairs outside their pubs and restaurants for customers. It was the only way that they could open. While this was all a better environment for people to be in, it wasn’t always the best set up for everyone.

People who use mobility aids have noticed a big access change when they are out and I’m not talking about places having disabled access – I’m actually talking about when someone in a wheelchair or a walker tries to go along a pavement. Most pubs have set up beer gardens right outside their venues which sometimes can mean that the table and chairs are directly on the pavement, not leaving enough space for mobility aid users to get by. Unfortunately, these changes have not been a plus for people with access needs. Although customers are apologetic (it isn’t anyone’s fault that there is obstructions) but this leaves the wheelchair or walker user feeling embarrassed that they have had to ask someone to move to let them past.

There has been changes in shops due to the social distancing requirement, some stores have made the aisles wider- this has benefited people who use wheelchairs as there is more room to get around the shop. This is a welcome change, but it isn’t like that in every store, some places have cut down floor space to allow social distancing to happen by putting up screens and barriers.

Parking has also been a problem for blue badge holders- the accessible parking bays are located near to the shops entrance but due to stores having to introduce a ‘queuing system’ and making sure social distancing was in place, a lot of shops blocked off their disabled bays to let more people queue. This left people with access needs with no choice but to park a bit away from shops.

Let’s talk a bit about how access has changed in eating places. One restaurant has unfortunately blocked off their accessible ramp and side entrance so that they can have a beer garden. This means people who use mobility aids don’t have suitable access into the restaurant. The venue has bought a portable ramp since, but it is very steep and dangerous… resulting in making customers nervous and requiring assistance to use it.

Considering the restrictions, everyone is more understanding that changes were needed to make places a safer place when Covid-19 appeared but we should remember that all of the world still must be inclusive. Everyone has a right to access, nobody should be faced with challenges when out and about.

In a recent Cerebral Palsy Scotland Twitter poll, we asked if people noticed a change in accessing places since the Covid-19 restrictions started- 60% said yes and 40% said no.

Thank you also to everyone who responded to our Facebook request and shared their own experiences of changes to access during Covid-19 restrictions – you made all the difference to this blog.

My move into supportive accommodation

This blog from Marion is about her experience with moving into supportive accommodation and some of the changes and challenges she has had to face in the process.

Hello everyone again. This blog which you are about to read will be about my experience with moving into supportive accommodation. I will also talk a bit about my previous houses, as well as the huge change I needed to make to my life.

I first moved into my own flat in 2008, and at the time I was supported for most of the week including overnights. I became an advocacy worker and  worked regularly in an office, which I loved. I had a great team of support workers and some are still great friends. Over time I moved to another house at the other side of Paisley. I got support but unfortunately I did not get full support while I was there but it was still nice to have a bit of independence. I also became a volunteer at Cerebral Palsy Scotland.

All my life, my parents and I always promoted my independence since attending the Bobath Centre in London from the age of one. “She does the work, not you”, I can still hear my dad saying!

In 2020, before the pandemic, my Social Work Department offered me the chance of moving into supportive accommodation. I wasn’t that keen on the idea but I knew for the future that was the best option for me. I got the keys to my new flat finally in the August.

During the lock-down period I had many zoom meetings to set up my service with my service provider. I finally got my team of support workers this March after months of interviews.

In May I moved in. For the first time in my life I was on my own at night. I can get support if I need it from an on-site core team. It is still hard to get used to.

It has not been that easy for me to deal with all the changes I needed to make to my life, like using a hoist instead of a stand aid because of my service provider’s rules.

Another change is, I can’t sit on my sofa every night. That means I’m in my wheelchair for nearly 15 hours a day.

Being brought up one way, e.g. therapy, doing what I want without thinking about how I can get to the toilet when I am out, and also being able to stand many times a day, I now need to adjust to another way.  I need to use a hoist, so I feel my world has become more limited. That is what I’m struggling with big time.

I feel like I need to make the best I can out of the situation that I find myself in. My advice to people who find themselves in a similar situation is, you have to be patient and keep going.

Even if you are worried you have to give it a good try and you may be amazed by what you can do.

Using my toe to type

In this blog, Barry talks about the skills he has developed to allow him to type and use a computer.

Hi, it is Barry Smith or Baz as I like to be called by my friends. As you all know I have cerebral palsy, but it doesn’t stop me from writing on my computer.

Image of Barry using his foot to typeBut I don’t use my hands. I have a big keyboard with an overlay on top of it. Down to my hands is very jumping which comes off of my CP, I type with my big toe. Then down to me can’t work a mouse, I use a jelly skill and work it with my foot.

I started using my big toe do things when I was 6 years old, like working the video. When I was 19 years old I got roll ball I move it with my toe.

In 2013 when I was doing a computing course at my local college, a boy looked in my classroom. One of the staff asked him what he were doing, thinking he was up to no good. He told her, I can’t get over him using his toe!

I use my skills to communicate to people what I want in my life. How I feel about having CP – if my hands can’t do something and my big toe or foot can, then I use them. My legs might can’t walk, but this won’t stop me.

Donate to our Spring appeal today

There is absolutely no doubt that for many people living with cerebral palsy the coronavirus outbreak has been extremely challenging.

We know that the physical and mental health of people with CP has been disproportionately negatively impacted by the coronavirus outbreak and restrictions.

To be honest, I dread to think what would have happened to us if we hadn’t found Cerebral Palsy Scotland. They have helped us to understand Lola’s disability fully and to interact with her in a way that gives her choices. They have given her a voice.”

Lauren and her daughter Lola have shared their story to support our Spring appeal and show how we work to support people with cerebral palsy and their families at Cerebral Palsy Scotland: by working in practical, direct ways, by seeing the whole person, by being ambitious for each individual we support, and by putting kindness at the centre of everything we do.

Cerebral Palsy Scotland is always totally committed to providing first-class specialist therapy and other services to support people with CP and their families to live and achieve to the very best of their ability.

We are asking if you will please donate today to Cerebral Palsy Scotland, so we can continue to do even more to serve and support people living with cerebral palsy and their families.

Read Lola’s story and donate today