Chairman's Blog March 2018 - Brain Health
This major document identifies key factors in MS management where timely intervention is essential and outlines “ideal” MS management structures and strategies for delivering timely information, care and support for those who have MS and their families. It also stresses the importance of the awareness of the social and economic impact of MS across different geographic and economic systems and calls for more use of “real-life” evidence to drive regulatory and funding decisions. This later comment was pleasing to see, especially since a therapy group (TOPS, Therapeutic OPportunities) which is partly funded by MS Research was recently awarded a Pharmaphorum Qudos award for Real-world evidence in care initiatives at the MS Trusts recent conference.
I must admit that in reading some of the report I found myself muttering “if only!”. While MS Research totally supports the initiative and knows of many healthcare professionals who find areas of debate and discussion of great value, it begs many questions around how to achieve ideal treatment goals and support self-help initiatives for individuals who have MS in the UK.
In all the countries supporting and contributing to this very worthwhile initiative, healthcare professionals work within the constraints and restrictions of their own health delivery systems. In the UK we experience major limitations due to the recognition that hospitals are struggling to cope with treating a very wide range of medical conditions and an ever-growing ageing population.
Because the numbers of those who have MS is relatively low compared with, for example, cancer or heart disease, very few GPs have specialist knowledge of MS. To ensure safe treatment and specialist care GPs will always refer people with MS to a specialist hospital team. This is clearly the right choice, especially as some of the new drugs used to treat relapse/remitting MS require careful monitoring and clear and detailed information to patients.
The development of specialist MS teams has helped greatly to cope with the need to provide more specialist support for patients and better treatment options across different clinical specialisations like nursing, physiotherapy and psychological support. We ask major hospital MS centres, Neurologists and senior managers to be aware of the vital importance of timely management of MS health changes and the threats these pose to individuals.