Speaking at today’s MS Cymru Roundtable event in the Assembly, which he sponsored, North Wales Assembly Member Mark Isherwood emphasised the need for improved services and treatments for people living with MS in Wales.
In his speech Mr Isherwood highlighted the key issues and priorities for people living with MS in Wales, which include patchy access to effective treatments to reduce relapses and slow disease progression; lengthy delays in accessing vital treatments and services; unnecessary visits to Accident and Emergency Departments caused by lack of infrastructure; an urgent need for greater awareness on MS amongst nursing and care staff; access to the most appropriate health and social care professionals; and basic end of life care and support.
He also stressed that people living with MS do not feel that their views are taken into consideration when services are being designed for them.
He said:
“Evidence from the MS community and clinicians in Wales to date suggests that with an increasing number of treatments available, each with different support and monitoring requirements, timely follow up is becoming more and more difficult resulting in less time to assess people effectively, discuss treatment options and manage risks.
“With this added pressure on MS Neurologist and Specialist Nurse case-loads, people living with progressive MS tell us they feel they are being pushed further down the waiting lists with little or no support.”
He added: “There are now 12 Disease Modifying Treatments (DMTs) licensed for relapsing forms of MS, all with different efficacies, side effects and methods of administration. DMTs can decrease the number and severity of relapses, delay the progression of disability and slow down the speed at which it happens.
“In August 2016, the MS Society published a series of reports, “MS treatment: Is access still a lottery?” for each UK nation. The previous survey in 2013 found that access to DMTs in the UK was low, with Wales having the lowest rate - just 30% of people with relapsing forms of MS taking a DMT.
Although their 2016 survey shows an improvement, Wales still remains the lowest in the UK (49%).”
“This rise in the number of people receiving DMTs in Wales is likely to be linked to the newer treatments that have become available on the NHS, which are judged to be more effective and easier to take.
“Access to health professionals and the right information make it more likely that a person will be taking a DMT; 81% of people who had access to MS Specialists and the right information in the last twelve months are taking a DMT, compared with just 20% of those who have not accessed these services.”
Mr Isherwood, who worked with MS Society Cymru, MS patients and Betsi Cadwaladr University Health Board to support access to the symptom management therapy, Sativex, in North Wales, also spoke of his concern that although Wales was the first UK nation to approve Sativex in 2014 – and Local Health Boards reported to the Health Secretary that it is on their formulae, and therefore “available” - MS Cymru expressed concern to him in March that many are struggling to obtain it because the infrastructure does not exist to prescribe and monitor Sativex to everyone who is eligible.
He said: “Only 1% of respondents to the “My MS My Needs” 2016 survey (who identified that they were eligible) were taking it.”
ENDS