Prynhawn Da Good Afternoon and thankyou to MS Cymru for inviting me to host and open this Roundtable event on Access to MS treatments and services in Wales.
- The purpose of the roundtable event which is to bring people living with and affected by MS, MS Specialists and Assembly Members together to discuss the way forward for MS treatments and services in Wales and how this fits into the Welsh Government’s prudent healthcare agenda.
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.
MS Society Cymru welcomes the Welsh Government’s commitment to invest in the New Treatment Fund which may see medicines for MS benefiting . There is a real concern however about what will happen when new treatments become available. Any new treatment will inevitably mean increased monitoring and this will place further demand on a service which is already working to full capacity.
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.
Symptom management therapies (SMTs) specifically licensed to treat MS, can make a significant difference to the day-to-day lives of those living with the condition, helping with problems such as spasticity and walking or an overactive bladder. Licensed SMTs for MS include Sativex, Fampyra and Botox.
Sativex has been approved for use in NHS Wales for people for who it is deemed clinically appropriate. The All Wales Medicines
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 formule, and therefore “available” - MS Cymru expressed concern to me 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.
Only 1% of respondents to the “My MS My Needs” 2016 survey (who identified that they were eligible) were taking it and MS Society Cymru hosted a roundtable event on in Cardiff last October to discuss the challenges faced by both people living with MS and the professionals responsible for their care.
I was pleased to have worked with MS Society Cymru, MS patients and BCU Healthboard to support access to this in North Wales -
- having previously called for the legalisation of ‘medicinal cannabinoids’ where these help individuals to reduce or manage pain, on behalf of constituents with neurological conditions (primarily MS), forced to break the law to access the only pain relief that really works for them.
Summary of the key issues and priorities for people living with MS in Wales:
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.
People living with MS do not feel that their views are taken into consideration when services are being designed for them.
An urgent need for greater awareness on MS amongst nursing and care staff.
access the most appropriate health and social care professionals.
and end of life care.
It is a privilege to Chair Cross Groups in the National Assembly for Wales including the Cross Party Group for Neurological Conditions, having chaired the Cross Party Group for Neurological Conditions across three Assembly terms since its initial inception in April 2009, ably supported throughout by MS Society Cymru – and I now look forward to discussion at this roundtable event.