Category: Uncategorised - Page 3 - Cerebral Palsy Scotland

Help us a build a picture of the impact of Covid-19 on people with CP

Help us show the impact of Covid-19 on people with cerebral palsy and their families

We find ourselves nearly a year into living with restrictions; schools are closed, face-to-face services are reduced, and we are all staying close to home.

We know all of these things have had a huge impact on people with cerebral palsy, their families and carers, and we want to ask you to complete a survey to help us build a national picture of what life is like now for the cerebral palsy community.

Through the two surveys we carried out in May and September last year, we gained really valuable information that helped us make sure our services helped people in ways that they needed. We were also able to share the information to inform government and policy makers what life was like for you.

How this survey will help

We plan to use this survey to:

Make sure the services and support we provide are still working for you.
Help us develop new services to address new challenges that may have arisen over the last few months.
Tell key agencies like the Scottish Government or NHS about the issues faced by the CP community.
Tell our funders about the additional pressures people are facing so that we can secure the resources we need to help people with CP and their families.

How to take part

Just click on the link below to take you straight to the online survey.

Click here to go to the survey

The survey will remain open until midnight on 19 February, but 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.

The team at Cerebral Palsy Scotland really appreciate you taking the time to complete this survey. Thank you for your support.

A life of Bobath therapy: Ewen’s story

For Ewen McIntyre, soon to turn 60, the Bobath concept of therapy has been – and continues to be – a central part of his life.

Despite the challenges of living with athetoid cerebral palsy, Ewen’s life is full of friendships, fun and very much good fortune. Growing up in sunny California, Ewen continues to enjoy life and lives happily at Capability Scotland’s Upper Springland in Perth. And for the last seven years he has also worked directly with Cerebral Palsy Scotland in Glasgow.

Ewen’s parents, Ann and Donald, grew up as neighbours in Edinburgh and on their marriage in 1957 Ann joined Donald in the college town of Claremont, California, where Donald taught geology for most of his career and where Ewen was born in July 1961.

It was several months until they became aware that there was something unusual about Ewen’s physical development progress. In due course on a visit to a hospital in Los Angeles, this problem was diagnosed as a form of cerebral palsy. On explaining to the doctor they were shortly to be visiting Ewen’s grandparents in Scotland, they were advised to include an appointment at the Bobath Cerebral Palsy Centre in London, and in August 1962 were able to arrange a consultation with Mrs Bobath. They were encouraged by her assurance that the Bobath approach to physical therapy could help Ewen to progress if the family were able to make a return visit to work with her and her team the following summer.

Ann continues, “We were, of course, eager to follow up on this offer. Happily, when Ewen was two years old and thanks to a financial windfall, in 1963 and subsequent summers we were very privileged to benefit from these annual visits to London and enjoy and learn from Mrs Bobath and her helpful staff. Each visit in its own special way, was a remarkable happy and heart-warming experience.”

“Dr Bobath gave a strong medical background to the clinic and for both of them, Mrs Bobath’s work with patients and students was their supreme delight and a unique gift to families like our own who were adapting to life with someone challenged by cerebral palsy. As a couple, they had so much fun together, teasing each other with jokes and laughter while all their energy and interest was poured out on working in concert together to help their patients at their very busy clinic. And now sine 60 years on, this London centre continues to retain the Bobath name and its fame as an international teaching centre for physiotherapists.”

“In 1963, for us as new parents, these visits were always a time of learning, of interest, encouragement and pleasure as we tried to increase our understanding of how best we could help Ewen. And we were greatly cheered by spending time with other young families and adults with cerebral palsy who, despite their challenges, were able to live full and interesting lives. On some of our London visits we lodged at the home of a friend who lived just around the corner from the Bobath clinic, where the Queen’s horses went clattering by each morning while out on their daily exercise. Perhaps it was no wonder that Ewen himself came to be an enthusiastic horse rider and, in 1980, won an award at the National Cerebral Palsy Games in Texas, USA!”

“These annual summer visits led to a personal connection between our two families. When Mrs Bobath was invited to Los Angeles to deliver a lecture there we were greatly honoured to have the couple spend the weekend with us at our Californian home. We were delighted to share with them the fun of Donald leading us all on a geological visit to The Joshua Tree National Park. The unique and beautiful rock formations there were indeed of special interest to Mrs Bobath who enjoyed sculpture as a hobby.”

“In 1989, on Donald’s retirement from teaching, our family chose to return to our native Scotland so that Ewen might benefit from linking up with Capability Scotland’s Upper Springland centre here in Perth. This has indeed turned out to be an excellent move but some time past before we learnt of the existence of the Bobath Scotland centre in Glasgow.”

“So a new chapter has opened on Ewen’s life and our regular visits to the centre over the past seven years have become a highlight of learning and of helping Ewen to hold his own. He continues to benefit as well as to greatly enjoy his work with the skilled and patient senior physiotherapist and friend Philip Vervaeke, at what has wisely been renamed Cerebral Palsy Scotland. The therapy Ewen receives there is of superbly high quality. I would say that Ewen has a confidence that he probably wouldn’t have had otherwise. The lovely, cheerful way that Philip works with people, Ewen just really responds beautifully to him. And currently, in keeping pace with these difficult times, some helpful virtual therapy sessions are ongoing between Perth and Glasgow!”

“For Ewen as an adult, the object and the benefits from Bobath-style physiotherapy certainly succeeds in helping him hold his own by slowing the pace of further deterioration in his physical well-being. Ewen can sit up straight – though sometimes only on reminder! – he smiles and laughs his way through each day as a happy and physically comfortable person. And from the bottom of our hearts we are grateful to all who help him. For the important part which you play, a very big thank you to Cerebral Palsy Scotland!”

Elaine Boyd

Elaine is a Chartered Certified Accountant with over 30 years’ experience of working in finance and audit. She trained in the private sector before moving to the NHS with roles in internal audit, financial accounting and financial management. For the past eighteen years Elaine has worked at Audit Scotland and is currently the Associate Director of Audit Quality and Appointments. She is also Vice-Chair on the ACCA Scotland Committee.

She has been a board member and treasurer of Cerebral Palsy Scotland since June 2014 and is excited about the opportunities and potential to reach out to the wider community that will arise following the transition to Cerebral Palsy Scotland.

Elaine has cerebral palsy and understands the challenges faced by those living with the condition. She is passionate about good, joined-up and inclusive services that provide a lifeline to the CP community. She is keen to see people with CP setting goals and achieving their dreams. Elaine’s determination to break down perceptions that having a disability limits career paths and activities has seen her participate in horse riding, flying a plane and skiing.

Go Green for Cerebral Palsy

By Bernie Hunter

World Cerebral Palsy Day is nearly upon us, it is a day to raise awareness about the disability. There is a campaign called ‘#GoGreen4CP’, I will be explaining what it is, why it is important and how you can get involved.

The campaign #GoGreen4CP aims to light up as many landmarks and buildings across the world in green, to show support to the 17 million people living with cerebral palsy. This is part of World Cerebral Palsy Day that is on 6 October, every year.

#GoGreen4CP raises great awareness and this means that cerebral palsy is talked about a lot more and it is the most important part of the campaign.

There are so many people who do not know enough about the disability and it shows when they meet someone who has cerebral palsy as there can be a sense of awkwardness, which is nobody’s fault, it is just a case of removing that barrier. GoGeen4CP is also a chance to tell the world that cerebral palsy doesn’t stop people from achieving wonderful things in life.

There are many different ways to get involved with #GoGreen4CP

If you live near one of Scotland’s #GoGreen4CP landmarks, swing by on 6 October and take a selfie to share on social media. Remember to tag @BobathScotland and use the hashtag #GoGreen4CP.

You can also approach your local landmark with a request to #GoGreen4CP on 6 October.

If you’re successful, contact local media and send them a request to promote GoGreen4CP and World CP Day. Share your personal story and remember to acknowledge the landmark owners.

Other ways to support World CP Day

World Cerebral Palsy Day also aims to make sure that everyone has easy access to support services. You can make a difference by raising funds too. To mark this day for cerebral Palsy, I will be using social media to tell my story of living with the disability- this will help raise awareness and get the word out there that having cerebral palsy may have challenges but it doesn’t stop you from doing the things that you set out to do, in life!

Check out this post, which gives you some ideas of how you can use World CP Day to raise awareness of the condition, as well as funds for Bobath Scotland.

Come on, let’s get together and turn the world green for Cerebral Palsy on October 6^th 2019! #GoGreen4CP

Employment as a disabled person – Claudia’s Story

Following Jill’s blog on her experience of trying to gain employment when you’re disabled, Claudia shares with us her story and recounts some of the obstacles she’s faced in pursuing her career.

When it came to work experience during my fourth year at school, I wanted to do something with sports. I was a gymnast with City of Glasgow Gymnastics Disability team at the time, and I wanted to become a gymnastics coach. To gain experience of working in a sports centre, I choose to do my work experience in Scotstoun Leisure Centre. However, when I arrived I was told to clean the toilets, and at the time I was suffering from a really sore hip because of my Cerebral Palsy. This made my hip worse and I only lasted half a day.

Once my exam results came through before starting fifth year, I found out I’d done really well in my standard grade administration and decided to do intermediate 2. After achieving a great result, I decided to do administration as a career. I didn’t want to leave school with no work experience so during sixth year I did a programme called Bridges to Work. Bridges to Work got me work experience in an office called Drivers Jonas.

After leaving school I knew college wasn’t for me and I wanted to go out and work. I applied for a modern apprenticeship, but I wasn’t ready so I went on a ‘Get Ready for Work’ programme. I was working in St. Mungo’s Academy providing administration support to different departments.

After gaining more work experience I was ready for a modern apprenticeship, however I came across other barriers such as working a 35 hour week and answering phones was hard due to my speech difficulty. I could only work a 25 hour week as I found it very tiring. I was lucky enough to find a company called Glasgow East Regeneration Agency (now called Job & Business Glasgow). I started my two year apprenticeship and gained a SVQ Level 2 & 3 in Business and Administration. After a year and a half into my apprenticeship I was finding the 25 hour week tiring and it started to affect my health. I had to cut down to a 16 hour week which I still do now.

Once my modern apprenticeship finished and after a year of being unsuccessful at finding another placement, I found an organisation called Shaw Trust which supports disabled people into work. Shaw Trust managed to get me a placement back at Job & Business Glasgow, but in a different office. I had a six month contract which was followed up by a three month extension. Once the extension had finished I went back to Shaw Trust who got me a further six months at Job & Business Glasgow.

In December 2014, when the six months in Job & Business Glasgow ended I wasn’t sure where I wanted to go next so I took some time out. In August 2015, I decided I better start looking for my next step. I wanted to do some volunteering so I contacted Volunteer Glasgow and they put me in touch with Project Scotland. Then I heard that Glasgow Centre for Inclusive Living who supports disabled people in to employment had an administration post within their company. I applied and I was successful. At the same time Project Scotland contacted me and told me that they had a volunteer place at Bobath Scotland. I couldn’t believe my luck when the two came up at once after being unemployed for a year!

In January 2016, I started with Glasgow Centre for Inclusive Living within their Equality Academy team. This was a year long contract. I worked there providing administration support and gaining some new skills. I also took up the volunteer place at Bobath Scotland and attended on a Friday. Recently I was meant to finish in Glasgow Centre for Inclusive Living Equality Academy, but I was offered a new 6 months contract.

I hope one day I’ll get a permanent job instead of short term placements but in a way I feel lucky as some people with Cerebral Palsy have never been successful. My story looks successful but trust me I’ve faced a lot of disappointments, barriers and frustration to make my story successful.

I hope that my story encourages other people with Cerebral Palsy to look for employment and not give up at the first hurdle.

If you want to find out more about getting into work, have a look at these websites:

Modern Apprenticeships

Shaw Trust

Job & Business Glasgow

Glasgow Centre for Inclusive Living

Glasgow Centre for Inclusive Living Equality Academy

Volunteer Glasgow

Project Scotland