UK Disability History Month: Reflections from our Members
UK Disability History Month is celebrated from the 16th of November to the 16th of December.
This year, we invited members to look back and share some reflections on the history of their organisation to recognise their fantastic work over the years.
Cerebral Palsy Scotland
The beginning
Over twenty-five years ago, a small group of families in Scotland had grown frustrated at travelling to London to get specialist therapy for their children who were living with cerebral palsy. Through their hard work, the Bobath Scotland centre opened its doors in Glasgow in 1995.
The focus in the early days was on providing intensive individual therapy for children, and many young people benefitted from the treatment they received at our first centre – Bradbury House in Knightswood.
Putting down our roots
Following two further site moves, in 2009 we relocated to our current home in Port Dundas.
In 2011 we expanded our provision by installing a state-of-the-art therapy kitchen in the basement of the centre.
A key development for the charity was the launch of our therapy service for adults with cerebral palsy in 2012.
Our services have continued to grow and develop, always guided by what’s best for the CP community and not what’s best for the charity. These have included the launch of our annual Cerebral Palsy Scotland conference and exhibition in 2013, and introducing a fortnightly baby group for children and their families in 2018.
Becoming Cerebral Palsy Scotland
In April 2020, in order to better reflect the range of work that we do, and so that we can increase awareness of cerebral palsy and work to reach everyone affected with CP across the country, Bobath Scotland took the positive step forward to change name to Cerebral Palsy Scotland.
Edinburgh Headway Group
From November 16th to December 16th is Disability History Month in the UK and we thought it a fitting time to look back with pride in Edinburgh Headway Group.
Here’s how it all began.
As Bill Bryden and his wife Jean celebrated Hogmanay with neighbours back in 1980 they were completely unaware that their son Neil, just one mile away, had been struck by a hit and run driver and had been taken to Edinburgh Royal Infirmary and operated on following multiple injuries and a fractured skull.
This resulted in Neil being in a coma for a month and some six weeks more before he could go home but the injuries he sustained would be with him for life.
Edinburgh Headway grew out of a support group which was set up after Glynis McEwan, a social worker working with head injury patients, invited their families and carers, including Bill and Jean, to a meeting at the Astley Ainslie Hospital in 1982.
The group started to meet once a month at the hospital and was eventually given the use of an old kitchen. Later still, after becoming a charity, they expanded into a former dining hall and coffee room.
They went on to have an office and gym as well as a room to carry out a wide variety of therapeutic and rehabilitative services.
It was as a lawyer that Bill was able to contribute most to Edinburgh Headway, turning the group from an unincorporated association into a limited company and registered charity.
In 1997, Jean was made an MBE for her work as chairwoman of the charity and full-time volunteer running Headway House in the grounds of the Astley Ainslie Hospital.
Edinburgh Headway Group with a small staff and volunteers went from strength to strength and grew into the charity it is today.
Edinburgh Headway Group relocated to the current premises at Peffer Place in 2018 with continued strong links with the Astley Ainslie Hospital, the Scottish Brain Injury Rehabilitation Unit, Edinburgh hospitals including the Robert Fergusson Unit at the Royal Edinburgh Hospital, GPs and social workers to identify those individuals and families who need our support.
Did you know that Ronnie Corbett was a patron of Edinburgh Headway Group for many years?
The original Headway House at the Astley Ainslie Hospital and original logo:
MS Trust
In 1993, Chris Jones, who lives with MS and her good friend Jill Holt, whose mum and aunt both had MS, decided enough was enough.
They founded a small charitable trust - initially raising money through the sale of Christmas cards, to provide information, support and, perhaps most importantly, hope, to people with multiple sclerosis.
That charity was the MS Trust.
30 years later, in 2023 it’s a very different landscape, but our promise remains the same. We will always put people with MS at the heart of everything we do.
Follow this link to hear more on how the MS Trust became what it is today: https://mstrust.org.uk/what-we-do/who-we-are/our-story
#MEAction Scotland
In May 2017, the first Millions Missing event in Scotland took place outside the Scottish Parliament. Millions Missing is a campaign for health equality for Myalgic Encephalomyelitis (ME), sometimes referred to as ME/CFS. Despite having no formal network at the time, organisers managed to gather substantial support through word of mouth. People with ME shared their stories, in person and in writing, helping to raise MSPs’ awareness of the ME community and highlight the lack of services and support for patients across Scotland.
At the end of the following January, a growing group of volunteers, comprising people with ME, carers and allies, organised a screening of Jenn Brea’s film ‘Unrest’ at the Scottish Parliament. The ‘Time for Unrest’ event provided information for MSPs and called on them to show their support for people with ME. Attended by over 70 people, it attracted an unprecedented number of MSPs and was described as “one of the most popular events I have seen” by the event manager at the Scottish Parliament.
In March 2018, Kim Gurav, Emma Shorter and Janet Sylvester officially launched #MEAction Scotland as an affiliate of #MEAction UK, which is itself is an affiliate of the #MEAction Network. Health and social care are the responsibility of the devolved administration in Scotland hence the separate group. #MEAction Scotland launched with three key aims: to be part of building a stronger ME advocacy community in Scotland; to raise awareness of the devastating impact of ME; and to lobby for effective support for people with ME.
A year after the first event was held outside the Scottish Parliament, a petition with over 7,000 signatures was submitted to the Scottish Government by #MEAction Scotland. The petition urged the Government to review the level of support for people with Myalgic Encephalomyelitis (ME) in Scotland. Emma Shorter’s evidence to the Petitions’ Committee can be seen here.
The submission of the petition provided #MEAction Scotland with a base from which we have built a solid relationship with key Government departments. A great deal has been achieved since 2017 but much more remains to be done. Details of our current campaigns can be found on our social media accounts: Facebook, Instagram and X
Thank you to all our members who submitted their reflections and to the many more who continue to work and campaign to improve the lives of people with neurological conditions.
MND Scotland
In 1981, police officer John Macleod set up the Scottish MND Association from his living room, two years after he was diagnosed with motor neuron disease (MND) aged 33. Supported by his loving wife Peigi, their family, friends and John’s police colleagues, a new charity was born which aimed to provide support for others going through the brutal disease.
MND is a rapidly progressing terminal neurological illness, which stops signals from the brain reaching the muscles. This causes muscle weakness and wasting. MND can rob someone of the ability to walk, talk, swallow and breathe.Today, MND Scotland is the only charity in Scotland dedicated to supporting people with MND, their families and friends.
Awareness of MND has never been higher and the charity is investing millions of pounds in cutting-edge MND research. Forty years of progress has meant that almost everyone living with MND in Scotland can now take part in pioneering clinical trials to find new medical treatments.
MND Scotland is incredibly proud that the Macleod family is still actively involved with the charity. John and Peigi’s son, Donald, is a member of the board of trustees.
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