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Policy and campaign update

During the past few months, we have been busy keeping the needs of people with cerebral palsy at the forefront of the minds of statutory service providers and policy makers.

Our CEO, Stephanie Fraser, Chairs the Scottish Government’s National Advisory Committee for Neurological Conditions (NACNC). The committee is focused on ensuring Scottish Government implement the Framework for Action for Neurological Conditions which covers from 2020 – 2025. Cerebral Palsy Scotland has had some funding from this work to look at service provision for adults with CP through our CP Connect programme and this coming year we look forward to working with specific local areas (Health and Social Care Partnerships in Midlothian and in Clackmannanshire and Stirling) to develop this work further in a local setting. Scottish Government published a mid-term progress report on the implementation of the Framework in July: neurological-care-support-framework-action-2020-2025-midpoint-progress-report.pdf (www.gov.scot)

Cerebral Palsy Scotland are also members of the Cross Party Group for Disability in the Scottish Parliament: https://www.parliament.scot/get-involved/cross-party-groups/current-and-previous-cross-party-groups/2021/disability. At their latest meeting, MND Scotland presented the findings of their report on the housing needs for people with MND, some of which is also extremely relevant for people with CP.  You can read their report here: https://aaf1a18515da0e792f78-c27fdabe952dfc357fe25ebf5c8897ee.ssl.cf5.rackcdn.com/2256/MND-Scotland-No-Time-To-Lose-Housing-Report.pdf?v=1646301622000

The All Party Parliamentary Group (APPG) is forum for everyone across the UK to come together at Westminster.  The group’s purpose is to enable policy makers to better understand the challenges faced by individuals of all ages with cerebral palsy and their families. Importantly, it has been constituted to take a life-long approach. The group has already published three reports, the first on early years, the second on best practice in education, health and care, teaching and learning for children with CP schooling and most recently a report on removing barriers for adults. The group is currently calling for evidence with regard to transitioning from children’s to adult services and will meet again in September to discuss this.  To read these reports, you can find them here: https://connectpa.co.uk/appg-cerebral-palsy/

We were delighted to be involved in the Royal Society of Medicine’s conference on 7th July Medicine and Me: Time for a new approach to adults with cerebral palsy with UP – The Adult Cerebral Palsy Movement.  Speakers included contributions from Cerebral Palsy Scotland trustee, Dr Kirsty Colquhoun and CEO, Stephanie Fraser.  A copy of the event recording can be accessed here: https://vimeo.com/732291911/4db25bfc7d

 

As members of the Neurological Alliance of Scotland, Cerebral Palsy Scotland welcomed last month the publication of the first patient survey undertaken by the Neurological Alliances from across the UK.  The report (which can be read here: https://www.scottishneurological.org.uk/news-resources/) highlighted that 1 in 6 people across the UK are living with a neurological conditions and that at least half were continuing to experience delays to accessing appointments and services.  The publication of the survey coincided with Carers’ Week and a debate in the House of Lords on neurological conditions to which our CEO, Stephanie Fraser contributed: https://hansard.parliament.uk/Lords/2022-06-09/debates/B6CB63B1-B491-4A14-B4EF-E6D382CEF6E8/NeurologicalConditions. We look forward to building on this growing evidence to ensure improved data collection so that people with cerebral palsy become more visible to service providers.

Tags: Cerebral Palsy, cerebral palsy scotland

An interview with Jack Hunter by Jack Hunter

Hello Cerebral Palsy Scotland readers! I hope you are well. My name is Jack Hunter and I’m going interview myself. No, I really am. I’m sitting here writing this at my laptop. I am speaking to you now from the past.

But before I start, I want to thank CP Scotland for their support and this opportunity to promote my new play One of Two, which is premiering at Summerhall, as part of this year’s Edinburgh Festival Fringe.

Ok let’s start:

Hello Jack.

Hello. Good to see you.

What is your connection with CP Scotland?

I am very happy to continue my association with CP Scotland.  And in fact, it goes a long way back. My twin sister Bec and I both have CP, and we used to come all the way down from Inverness to the centre to receive specialist physiotherapy treatment. Of course, that’s when it was known as Bobath Scotland. I still remember going to the centre, when I was wee.  One time In order to measure my gate, the team put dozens of little light bulbs on my body. It kinda looked like a motion capture suit, in a fantasy film. It was so cool! The centre does some fantastic work.

In 2019, I spoke at, what I believe was, the final Bobath Scotland Conference, with the Artistic Director of Birds of Paradise Theatre Company (BOP), Robert Softely Gale – who also has CP. We were speaking about a documentary they had produced in parallel with their 2018 Fringe smash hit My Left Right Foot – The Musical. The film was called You’ve Got to be Ballsy: Stories from the Frontline of Cerebral Palsy and the idea was for me to interview an array of young people with CP, to give them a platform to share their experiences of what being a young disabled person is really like. It was a real privilege to speak with all the people who contributed: artists; swimmers; actors; musicians – and Bec… But you know, I’ve heard all her stuff before… She won’t be happy with that. No, that’s not true. I think for both of us it was a revelatory experience. In fact, if anything it brought us closer.

Through the conversations I had, the aim of the film was to give disabled people, an underepresented group across society, a public platform, to spotlight  discrimination and abelism.. In addition, the filmed participants challenged prevalent  misconceptions about disability. I’m really proud of the film for this reason; as it enabled the  individual voices of young disabled people to be heard. It’s one thing to raise awareness regarding the challenges disabled people face, It’s other to accept the expersonce of every disabled person is diffrent.

Very insightful Jack. Now tell me what is One of Two, what is it about?

One of Two is an autobiographical play that tells my shared story, with Bec, of two twins growing up with Cerebral Palsy. It’s a comedy drama, with shades of light and dark, as well as a lot of lunacy.

On the face of it, we find a very sad Jack (AKA me) alone in his flat, struggling to come to terms with the end of a relationship. He’s trapped in his grotty wee bathroom with a Star Wars inspired “Darth Tater” Mr Potato Head. What’s not funny about that? A revelation occurs to Jack (It’s funny talking about yourself in the third person. You can tell I’ve got the appropriate amount of distance from it now) that he has always needed to be paired with someone else. A friend. A partner. A twin…

Ultimately, the audience will go down the rabbit hole, or perhaps more aptly the toilet pan, with Jack through his shared past with Bec, past on a journey of self-discovery. Creating the show has been a lot of firsts for me. It’s my first ever professional writing credit and it will be my first ever acting job at the fringe – I’ve been living in Edinburgh for nearly ten years, so it’s about time really.

None of this could be possible without the support of a few organisations. Firstly, a big thank you to Summerhall for awarding me the Mary Dick Award. I’m buzzing to be part of their fringe programme. I’m incredibly grateful to Birds of Paradise Theatre Company for their support as producers. I’m excited that Robert Softley Gale is coming on board as director too! I’m sure we’ll have a lot of fun.

I hope that’s enticed you into coming along.

Well… I’ll definitely be there. Why did you want to tell this story?

My relationship with my sister has had an everlasting influence on me and has undoubtedly shaped me as a person. So, in order to understand where I stand in the world, I wanted to unpack this unique relationship.

Without being too cerebral… the play focuses on the disparity of  Bec’s and I’s experience of growing up with CP.  As young kids  our early years were near identical; however as we grew older, key differences have arisen throughout our lives.

You should know that I have a mild manifestation of CP (I walk with a limp as my left leg is shorter than the right), whereas Bec has a slightly more pronounced manifestation (she is a full time wheelchair user).

None of this should matter as people should be able to live their life regardless of their impairment but society has disabled us to varying degrees, Bec more so than me.  I wrote this play because I wanted to investigate this disparity of experience; the inequity of experience between disabled and non-disabled people, but also within the disabled community itself. For instance, Bec and I’s experience within secondary and further education was vastly different. This primarily came down to contrasting attitudes of how educational professionals and fellow students perceived us and our abilities. I think the  play boldly examines the partial failings of our education system and the methods of how it supports young disabled people.

Although the play has a strong theme of disability, it’s also a coming-of-age story, and I hope will have universal appeal with a wide audience, beyond being pigeonholed as a “disabled” story. I know “coming of age” is a bit of a cliché. A bit generic.  A bit bland. But I don’t think it is a style of story often explored from a disabled perspective Bec and I have faced a few barriers throughout our lives; and I think as a society we often are conditioned to not talk about how this impacts our own mental health or self-worth. And at times we are hindered by and urged to adhere to idealistic societal expectations. But in the words of Fleetwood Mac: “you can go your own way…”.

I assume the play will be seen by a predominantly non disabled audience. My hope is that the play will not only raise awareness of the societal barriers that disabled people face, but to provoke the audience into reflecting upon their own perceptions of disability. This is in now way to  alienate the audience. The world, now more than ever, is so polarised. In my mind you’re not going to instigate change by demonsing anyone. I want to bring the audience  with me and keep them on side. How do I do that, you ask? Jokes. Lots of Jokes…..

Wow, how thought provoking!

Why, Thank you.

Why should people come see the show?

First of all, I should say that technically it’s a one man show. On the surface, that doesn’t sound very unique. One person shows are ten a penny at the Fringe. However, Bec will be with me, not in spirit, but through the wonders of multimedia. Voice over, projection and what not. So, she will have a presence. We will converse. And a jolly time will be had by all.

The play has an interesting blend of performative styles. Obviously, it’s theatre. There’s no getting away from that. But that’s not bad in the slightest. It means you can fit in a lot of styles. Not to say that it’s slapdash, you understand. It’s been honed, crafted, and mushed together into a smooth theatrical pulp. The key ingredients are: a slice of silliness, a sprinkle of stand up, and a slurp of spoken word. So hopefully, there’s something for everyone, unless you want interpretive dance. I can’t help you in that department.

However, I do feel that the main selling point of this play is the story. I believe it is truly unique.

What’s your relationship with Bec like?

Oh, we’re incredibly close.  We don’t see each other as much as we used to, what with Bec living in Inverness and me living in Edinburgh. She has a great phrase “It’s a relationship that doesn’t require maintenance” which I think is so true. We can go ages without seeing each other, but the closeness is still the same. I think if you have that shared lived experience, you will always have a tight bond. But we definitely don’t agree on everything.

Having Bec involved in One of Two is incredibly Important to me. Both her and I care immensely about supporting disability rights and raising awareness. Whether it’s through my creative work, or through Bec’s disability training sessions with Naked Brains Consultancy. We want to instigate discussion and social change.

Are there, in your mind, any misconceptions that surround disability?

I think there are probably a fair few floating around. However, I think maybe the biggest dual misconception held by non-disabled people, is that disabled people are either inspiring or destitute. Inspiring because somehow we have defied the odds stacked against us to obtain a ‘normal lifestyle’: job; home; family. That kind of thing. Or we’re destitute, as those that have been disabled by society are left without support and slip through the cracks, leaving them with nothing.

This contrast in views, in my mind, is clearly down to a lack of socio-economic provision to support disabled people, but is also due to a lack of awareness across society. I hope that One of Two can shed some light on this gross inequality.

Thank you, Jack.

You’re welcome.

And finally, when and where can we see One of Two?

One of Two is at Summerhall in Edinburgh, from the 3rd – 28th of August, at 11:45am. The venue has level access, there is audio description and captions at every performance, we are doing four BSL interpreted performances, and one performance will be Relaxed.

If you want any more information, you can follow me on Twitter and Instagram @jack_hunter95, and you can find out full details on the Birds of Paradise website.

Come along, It’s going to be a blast.

Thank you for taking the time to interview with me, Jack.

You’re so welcome.

 

Tags: Cerebral Palsy, cerebral palsy scotland

Stephanie Fraser, CEO granted peerage

Advocating for policy change

Cerebral Palsy Scotland is delighted to congratulate Stephanie Fraser, CEO on being a granted a peerage by Her Majesty the Queen.

Stephanie Fraser

Ian Johnstone, chair of Cerebral Palsy Scotland said:

I’m sure that Stephanie will make an excellent member of the House of Lords and, no doubt, will continue to advocate for people with CP and other neurological conditions as well as take a keen interest in very many other areas.

At the end of a difficult year for people with CP, we are heartened that Stephanie will be able to represent our community at a UK wide level and wish her every success on this appointment.

Tags: cerebral palsy scotland

A life of Bobath therapy: Ewen’s story

Ewen and family

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, Ann and Donald
Ewen, Ann and Donald

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.”

Ewen and Mrs Bobath
Ewen and Mrs Bobath

“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!”

Ewen horse riding
Ewen horse riding

“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!”

Ewen at Upper Springland
Ewen at Upper Springland

“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!”

Tags: Bobath therapy, Capability Scotland, Cerebral Palsy, cerebral palsy scotland, Therapy

Understanding the impact of COVID-19

  • Campaigning
  • The impact of covid
  • Support for adults
  • Stamp out the gap
  • Counting people with CP
  • National alliances
  • World CP day
  • Campaigning
  • The impact of covid
  • Support for adults
  • Stamp out the gap
  • Counting people with CP
  • National alliances
  • World CP day

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

 

Tags: Cerebral Palsy, cerebral palsy scotland, coronavirus, covid-19, Health, lockdown

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