Rebecca Evans AM in dialogue with Alan Thomas—Learning about Ataxia

Rebecca Evans AM in dialogue with Alan Thomas—Learning about Ataxia

Rebecca Evans AM, who gave a well received speech at the Welsh Focus Conference back in April, which included a personal account of her work as a full time carer in her twenties and a previous role for the National Autistic Society, honours her pledge to see ‘disability as a core part of my work in the Assembly’ in a detailed discussion with Welsh Focus Consultant, Alan Thomas…

In the important dialogue with Welsh Focus consultant and key disability campaigner Alan Thomas, Rebecca utilised the opportunity to find out more about issues affecting people with rare diseases in Wales.

Alan Thomas is Chair of Ataxia UK’s South Wales Branch, which offers support and information to people in Pembrokeshire, Carmarthenshire, Powys and Ceredigion. He also runs the Living with Ataxia Global Network and campaigns widely on rare diseases.

Rebecaa Evans is Chair of the National Assembly for Wales’ Cross Party Group on Disability, and has led a debate on rare diseases in the Senedd.

Following the meeting with Alan she commented: “Although the conditions are rare, there are common problems facing people with rare diseases. These can include access to a timely diagnosis, misdiagnosis, lack of access to information, poor coordination of care, problematic transition from children’s to adult services, lack of access to treatment, a lack of research, and inequality of provision.

“Thanks to a European Union recommendation, however, the UK will soon have its first ever rare disease strategy. This is an exciting development that has the potential to bring lasting, positive and transforming improvements to the quality of life of people with rare diseases. I am keen to ensure that this opportunity is seized in Wales.”

Rebecca and Alan had a wide-ranging discussion, including the need to raise awareness of rare diseases amongst people working in the field of health, and other frontline professionals, as well as increasing understanding amongst the wider public. They also explored the increasing role that telehealth could play in meeting the needs of people with rare diseases.

Alan Thomas said:

“Awareness of Rare diseases is paramount in all walks of life, to the benefit of us all.

“I am very proud to be involved with spreading the, very important, word about the problems that a person with a rare disease may face in Wales, UK, and globally.

“As much of Wales is a very rural community the use of Telehealth is of much importance for people with a Rare disease to be confident that their well-being is monitored leading to an inclusive life.

“As a Rare disease patient I only know too well how a person can be treated, and this I aim to change.”

Alan’s strength of purpose is known right across Wales. His work with the net as a tool for advocacy has seen him recognised as a Martha Lane Fox ‘Race Online’ digital champion in 2012. His ability to raise awareness of the issues surrounding rare diseases has seen him carry the message across the world, with his motto ‘to keep a positive outlook on life’ at the forefront of every campaign he leads.

Rebecca Evans with her commitment to seeing that the Welsh Assembly recognises the importance of support to a key section of the community, and Alan Thomas with his steely approach to seeing that people with rare diseases do not become a footnote on a minority report are both to be praised.

Together they make a tremendous team. News that Rebecca has led a debate on rare diseases in the Senedd shows that even in these most difficult of times the cause of disabled people in Wales is moving up the agenda.

Not for the first time, people and politicians in Wales are showing the way with disability issues.

With Rebecca Evans AM and her commitment, ground has been gained. It is clear from the meeting that the Forward March of Labour, most definitely has not been halted.

note A rare disease is defined as any condition affecting fewer than 5 in 10,000 of the general population. There are over 6,000 known rare diseases. Rare diseases will affect 1 in 17 people at some point in their lives – that equates to 175,000 people in Wales.

Rebecca Evans AM’s contribution to the debate on rare diseases:

More information on Ataxia South Wales:L