Responding to the Health Secretary’s Statement in the Assembly Chamber this week on the Neurological Conditions Delivery Plan 2017-2020, Mark Isherwood AM put forward an array of questions and concerns raised with him by members of the Wales Neurological Alliance and the Cross Party Group on Neurological Conditions, which he Chairs.
These included points raised by the Multiple Sclerosis Society Wales, the Motor Neurone Disease Association and the Dystonia Society.
Speaking in the Chamber, he said:
“The revised Neurological Delivery Plan acknowledges that National Guidelines set out the Welsh Government’s ‘expectation of effective care for people with a neurological condition’, and the National Institute for Health and Care Excellence (NICE) has published a set of recommendations for the NHS in England and Wales, allowing Health Boards and healthcare professionals to see what level of service they’re expected to provide for people living with Multiple Sclerosis (MS).
“However, according to the Multiple Sclerosis Society Wales, the standard is not being met. What steps will you therefore take to ensure that Local Health Boards provide the necessary baseline data that would afford a better understanding of MS treatments and services across Wales and enable the effective commissioning of services, and to ensure that the NICE quality standard for MS is implemented consistently across Wales?”
With regards to Motor Neurone Disease (MND), he said:
“The Motor Neurone Disease Association supports the publication of this Neurological Conditions Delivery Plan, but they ask the Welsh Government to ensure that Local Health Boards make local Delivery Plans publicly available and that local, easily accessible Neurological Service User Forums are established as a priority to engage in a co-productive dialogue and allow public scrutiny and monitoring of local delivery plans.
“They ask the Welsh Government to produce Annual Reports, or ensure that Local Health Boards produce Annual Reports, demonstrating clear and robust evidence of progress against key actions in language that is easily understood by those affected by neurological conditions, and they ask for equity of consideration to be given to rare neurological conditions like MND and to ensure that action plans and annual reports provide robust condition-specific evidence against outcome indicators and assurance measures.”
In relation to Dystonia, he said the number of people living with the condition has doubled to 5,000 since the delivery plan started in 2014.
He said: “Due to the demand on services for Dystonia, especially Botox injections, there’s been no plan to make the treatment of dystonia sustainable in Wales. The Dystonia Society are therefore very concerned that continued cancellation of appointments in North and South Wales will lead patients and service users to seek deep brain stimulation surgery because of the worry of losing their jobs and their financial situations.
“How, therefore, do you respond to their recommendations that Botox clinics in North and South Wales must include a Specialist Dystonia Physiotherapist in the Clinic, that more awareness is needed locally, especially in GP surgeries, to bring down waiting times, that there’s a need for more training in Ophthalmology and ENT regarding administering Botox injections, and a need for better holistic approaches, including psychological and emotional support?”