Speaking in the Assembly Chamber this week, North Wales Assembly Member and Chair of the Cross Party Group on Neurological Conditions, Mark Isherwood AM, has urged the Welsh Government to respond to the concerns being expressed by people with Dystonia in both North and South Wales.
Raising the matter in this week’s Business Statement, Mr Isherwood referred to the poor service provision for people living with Dystonia, a neurological condition that can affect any part of the body, and the recent media reports of cancelled appointments.
Calling for a Welsh Government Statement on services for people in Wales with Dystonia, Mr Isherwood said:
“Responding to the Health Secretary's Statement last September here on the Welsh Government's Neurological Conditions Delivery Plan, I noted that the number of people living with the condition had doubled in Wales to 5,000 since the plan started in 2014, and, despite that growth in demand, especially for Botox injections, there'd been no plan to make the treatment of dystonia sustainable in Wales.
“The Health Secretary responded by saying he recognized there are real concerns and that he had arranged for contact to take place with Cardiff and Vale University Local Health Board.
“Well, this weekend, we saw BBC Wales coverage of dystonia patients in Cardiff being distressed over cancelled Botox clinics, and the founder of Dystonia Cymru, Graham Findlay, saying ‘a perfect storm is brewing’ over mass cancellation of appointments.
“We also saw coverage by BBC Wales of Ann Pierce-Jones from Gwynedd, saying very much the same in terms of North Wales. When I represented her last year, she raised with me concerns regarding services for people who suffer with cervical dystonia, or torticollis, in North Wales and said it's clear patients, including herself, are not receiving regular treatment and a standard of care to enable them to potentially have a better quality of life, and that the lack of support and regular treatment affected her life in a really negative, and need I say painful, manner. Given that the Health Secretary made the response last September but these concerns are being raised this weekend on BBC Wales, I would urge the Welsh Government to respond to the concerns being expressed by people with dystonia in North and South Wales and provide a Statement accordingly.”
Leader of the House, Julie James AM, replied: “The Cabinet Secretary is indicating to me that he'll write to Members, setting out what our policy on treating dystonia actually is, and the Member, I'm sure, will be taking it up further from there.”
Mr Isherwood added: “Patients not only consistently report cancellations and delays in their Botox treatment, but also that it takes on average five to 10 GP appointments before they are referred to either Neurology or Ophthalmology services, that there is a lack of trained ENT specialists in Wales, and that holistic therapies including Neuro Physiotherapy and emotional support are not available to them due to the high demand.”