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Coming for therapy as an adult

by Jill Clark

In this blog I am going to talk about how Cerebral Palsy Scotland can provide therapy for adults who are living with cerebral palsy (CP).

I am also going to share my experiences of getting therapy as an adult and other adults’ experiences of therapy as well.

How does Cerebral Palsy Scotland support adults?

Cerebral Palsy Scotland provides specialist therapy using the Bobath concept to those living with cerebral palsy in Scotland. Founded in 1995, the charity has grown and developed, both in the services that are provided and the number of people the centre sees. Cerebral Palsy Scotland offers support to anyone with a diagnosis of CP, regardless of their age or location, and try to reach as many people as possible at the centre, online, and in their own communities.

There are three different types of therapy offered at the centre: physiotherapy, occupational therapy and speech therapy.

Physiotherapy is when you work on your body and muscles to make them better. Occupational therapy is when you work on skills like washing, dressing or cooking. Speech therapy is when you look at your ways of communication and eating/drinking.

When Cerebral Palsy Scotland started it was just for children, but in April 2012 the charity started to provide therapy for adults with cerebral palsy too and it has been a great success ever since.

If you want to start to come for therapy sessions, you will get a free first assessment where you meet two therapists to talk about you and look at what you can work on or towards. Some people come for just physiotherapy because they are having pain and some people come to work towards their goals like cooking or getting dressed.

Jill

Now I am going to talk about my own experience of Bobath therapy as an adult and share other people’s experiences too.

I am 27 and have cerebral palsy. I am in a wheelchair and use a communication device. Due to my cerebral palsy my muscles get tight, especially my legs and hips. I go horse riding and that helps but last year I started to feel more pain.

So I asked to come to Cerebral Palsy Scotland for physiotherapy to help my body to get looser. I had a few sessions with two physiotherapists and we looked at how I sit in my wheelchair because that can be a help with my muscles. The physiotherapists changed my wheelchair a bit to help me to sit me better and that has helped my muscles a bit. And over the past few months the physiotherapists at have been helping myself to get a new wheelchair. So being an adult with cerebral palsy I think I will need input from physiotherapists at Cerebral Palsy Scotland as I get older to keep me comfortable in terms of my sitting and also my muscle pain.

Now I am going to share other adults’ experiences of therapy at Cerebral Palsy Scotland as an adult.

Kirsty

Kirsty is 24 and has quadraplegic cerebral palsy which means that she has spasticity in all four limbs so she finds fine and gross motor movement difficult.

Kirsty started to come to Cerebral Palsy Scotland as an adult when she was 22 and she tries to come to the centre every 3-4 weeks for therapy. Kirsty comes to work on a lot of things. She explains:

“Trying to walk, I spend a lot time trying to weight shift and trying not to move all my body as one. Trying to not arch my back. Trying to sit on one side then the other.

“I learnt how to deal with change and count money and fold up clothes. We work with my hands because they would not rotate so I found it very hard to get anything onto the palm of my hands. So we did a lot of games with my hands and used toys to help me to achieve this experience. I was very happy. I couldn’t fold up my clothes neatly so now I can do that. I went to the kitchen to make some food to work on my fine motor skills.”

Kirsty and her family has built up a friendship with the therapists here, especially Leen and Petra. Kirsty likes that that the therapists are very understanding of her CP and she likes that the therapists talk to her and not just to her mum or PA. Kirsty thinks they just are fantastic.

Kirsty has got a lot out from coming to the centre and she would recommend Cerebral Palsy Scotland and she explains why,

“I think it’s a really fantastic place to be part of even though I have cerebral palsy that I don’t really like having, a good thing about having CP is that I have Cerebral Palsy Scotland. It’s like a second home for me.”

Marion

Marion is 35 and has dyskinesia cerebral palsy which affects all her movements, limbs, muscles and speech. Marion comes for ten sessions a year at Cerebral Palsy Scotland to work on a lot of things. She explains:

“My goals are trying to open my chest more, minimising back pain and just keeping my ability to weight bear. I work on my sitting on the bench and over blocks on the bench to help to open my chest and I practise standing. I also work on my legs and hips.”

Marion thinks very highly of the therapists at Cerebral Palsy Scotland and she explains,

“The therapists have always been very understanding with everything in my life. The therapists have done great supportive letters for trusts or other professional people for me and they are easy to get in touch with. Also they are really friendly and helpful.”

As Marion has been coming to Cerebral Palsy Scotland for many years it has been a big input in her life, she explains “Without this input over the years I don’t believe I could be active and flexible in my body which means I can do all the activities that I do. For example, wheelchair dancing or working on my computer, and using my talker.”

Marion would definitely recommend Bobath therapy to any adult with cerebral palsy and she explains why,

“The therapy might help them do their activities easier or help with any pain in their bodies. Also they might get help on other issues too.”

Enquiries and funding

As you have just read about, Cerebral Palsy Scotland does make life better for adults with cerebral palsy. So if you are an adult with cerebral palsy why don’t you come and see us to find out if we can help you in any way.

And, if you are aged 18 or over, you may be able to apply for subsidised therapy sessions at our Glasgow centre, via our Helping Hands scheme.

You can also call the centre on 0141 352 5000 or email: info@cpscot.org.uk

Keeping cosy over winter

‘I’m going to be warm this winter’…Bernie shares some tips on how to help keep yourself cosy for winter 2020.

People who have cerebral palsy can feel very cold sometimes as the disability can affect circulation so it is really important to keep warm, especially at this time of year. Winter is not that nice for anyone but people cope with going out on freezing cold days and as they can keep warm by walking about, they just get on with it but it is different if you have limited movement.

Dress appropriately for the weather

I put on warm boots, my feet are always cold due to my circulation but the boots really help.

Take a hot water bottle out with you

This really keeps me cosy, I put it on my lap and it heats me up within minutes, it lasts for a couple of hours too… just make sure that the lid is on tight though!

Blanket

I have a nice soft blanket that I put over my lap when I go out, to help keep my legs warm.

I do all of these things and they really make a big difference- it is better than feeling cold all day!

Bonus Tip

If you are a wheelchair user, you may know that it can be as real challenge to go out and about in the ice or snow as the wheels just spin which leaves you stuck. Unfortunately, there is no way to overcome this apart from having someone to hold the back of your wheelchair to make you feel more secure.

Enjoy keeping cosy!

Finding accessible gifts

by Bernie Hunter

Finding the perfect present to buy anyone can be a struggle but what if you are buying for somebody who has got additional needs? In this blog, I will explain why it is so challenging to find accessible gifts.

Shopping for presents is a big task that requires a lot of thought, but if you are buying for your family member or friend who has cerebral palsy it is totally different. Children love new toys, but some toys are hard to play with if you have cerebral palsy.

Think about a simple toy such as a musical teddy bear that you press a button on the bear to make it sing. But not everyone can press a button as cerebral palsy can affect hand movements, which means that the child has to rely on other people to press it for them and that is no fun.

Buying gifts for adults with cerebral palsy can be hard too, as it needs to be a product that they can manage to use. Slippers are an example of an unsuitable gift, as they just fall off your feet every time you move. Even in your chair they slip all over the place, so I personally prefer slipper boots or cosy socks.

There are not many accessible presents available to buy in shops, so the best option is usually to do some research and see what is out there. I really would like to see shops selling an accessible range of gifts because it is very important that children and adults receive presents that they can easily use.

I would love to hear if you have bought or received any great accessible gifts. Let us know by getting in touch on Cerebral Palsy Scotland’s Facebook page.

New ‘Framework for Action’ aims to improve support for neurological conditions

The Scottish Government has today published its new Framework for Action for Neurological Care and Support in Scotland.

Supported by £4.5 million of funding, the plan aims to ensure people get access to personalised care and support regardless of their particular condition or where in Scotland they live.

The publication of the Framework, which spans the period 2020-2025, follows the public consultation on the ‘draft national action plan on neurological conditions’, which concluded in February 2019.

The plan was developed by the Scottish Government in partnership with the National Advisory Committee for Neurological Conditions (NACNC), third sector organisations, health professionals and the neurological community.

The Framework focuses on adults (16 years and older). It contains five overarching aims and 17 commitments to support improvements that span health and social care. The five aims are to:

ensure people and their carers are partners in their care and support;
improve the provision of co-ordinated health and social care and support for people with neurological conditions;
ensure high standards of effective, person-centred and safe care and support;
ensure equitable and timely access to care and support across Scotland; and
build a sustainable neurological workforce for the future.

Stephanie Fraser, CEO of Bobath Scotland, who is speaking at the launch of the Framework today in her role as Chair of NACNC, welcomed the report. She said:

“I am delighted that Scotland now has its own Framework for Action for neurological conditions and I hope this will have a positive lasting impact on the neurological community.

“We welcome the collaborative approach to develop this Framework and recognise that the publication’s ambitions will need a continued collective approach with the Scottish Government, NHS, Local Authorities, third sector and people living with neurological conditions.

“As part of my role as Chair of The National Advisory Committee for Neurological Conditions I look forward to providing advice to the Scottish Government around the implementation of the commitments and aims in the Framework to help improve the lives of those in the neurological community.”

The Framework has also been welcomed by the Neurological Alliance of Scotland, the umbrella body of organisations and groups representing people living with or affected by a neurological condition.

Commenting on the Framework, Rebecca Duff, Chair of the Neurological Alliance said:

“We believe that today’s plan is an ambitious and promising first step to transforming the experience of people with neurological conditions in Scotland and the unpaid carers who support them. We want the plan to meet its potential, and look forward to playing our part as a key partner in its implementation. We will be keen to make sure that the implementation programme receives the investment it needs to deliver renewed collaboration across sectors and make real, lasting changes for those living with neurological conditions in Scotland.”

Access Neurological Care and Support in Scotland – A Framework for Action, 2020-2025

Girl’s birthday bid to raise money for Bobath Scotland

An eight year-old girl from Glasgow is getting ready to celebrate her ninth birthday by raising money for Bobath Scotland because we have supported her young cousin.

Sadie Hay has organised a sponsored walk on her birthday and is asking friends and classmates to donate to Bobath instead of giving her a present.

Her five year-old cousin Noah has cerebral palsy and receives therapy from us.

Sadie’s mum, Sharon said:

“She had been speaking about what she wanted to do for her birthday, and out of the blue said she wanted to do something for charity. And then quite quickly she realised that she wanted to raise money for Bobath Scotland because her cousin Noah goes there for therapy.

“She worked on a presentation herself which she gave to her whole school, explaining what cerebral palsy is and a little bit about her cousin, and inviting everyone to take part in the sponsored walk and donate to her fundraising page.

“Her dad helped her print little business cards with a QR code which takes you directly to the donation page and she also designed a poster for school to advertise details of the walk.

“She still thinks she is not getting any birthday presents, and she is fine with that! I’m really proud of her, and I’m so impressed how she’s been involved in every step. She’s absolutely delighted because a few of her friends have said that they are going to do something for charity for their birthdays now too.”

Sadie has already raised £900 and is hoping to raise more in the run-up to the event, which will take place on 9 November in Victoria Park.

Noah’s mum, Heather Hay, is also delighted that her niece is raising money for Bobath Scotland. The family live in Banff and have previously travelled to Glasgow to get specialist therapy for their son at the Bobath Scotland centre. They are soon to be starting therapy sessions with Bobath therapists in Aberdeenshire, as part of our outreach programme. She said:

“Sadie gave us a ring and said she wanted to do something for charity for her birthday and told us she had chosen Bobath Scotland. She read us the presentation she gave to her school over the phone and it made us feel very proud that she wanted to do this for her cousin. My husband and I both felt a bit emotional when she first told us. It’s really sweet of her, and it’s superb that she has gone out of her way to do this at such a young age.”

“As a family, we have found the intensive therapy sessions at Bobath Scotland really beneficial – not just for Noah, but it’s also made us more aware of how his body works and how we can support him better. Noah has right-sided hemiplegia, which means he finds using that side of his body quite challenging. The sessions really opened our eyes to how we can encourage him to use his whole body. After the therapy sessions we noticed small improvements in how he was moving that really made us smile and realise that every little helps.”

Commenting on the fundraiser, Stephanie Fraser, CEO of Bobath Scotland said:

“We are so impressed with everything that Sadie is doing and are extremely grateful for her support. Raising vital funds means that we can be here for children like Noah and many others across Scotland living with cerebral palsy who need specialist help. Thank you Sadie and we hope you have a very happy birthday.”