The importance of proactive involvement in their own care was the main theme of an information day for people with MS in Torquay, UK, organized by Professor Jeremy Hobart in collaboration with the UK Multiple Sclerosis Society.
Such was the hunger for information about the disease, that this regional event was packed with over 200 attendees – mainly people with MS accompanied by care givers.
The programme covered all aspects of a holistic management approach, including:
- an overview of the disease-modifying treatments currently available and in development
- ongoing efforts to put in place the infrastructure for conducting clinical trials in people at high risk of getting MS (see #PreventMS)
- the work of the MS Tissue Bank
- the importance of diet, lifestyle, exercise and brain health, and
- the impact of a positive attitude (embodied in approaches such as mindfulness).
People with MS were encouraged to partner actively in decisions about their own care and embrace self-management. Professor Gavin Giovannoni explained that, as well as avoiding smoking and eating a healthy diet, there is increasing evidence that vitamin D supplements can be important in reducing risk. George Pepper, who co-founded shift.MS, the social network for MSers, stressed the importance of effective treatment, and that a ‘wait and see’ approach is no longer acceptable.
All the contributions at this highly informative event reinforced the message of partnership. Kevin Foster MP (pictured), who represents the local Torbay constituency, encouraged all stakeholders to work tirelessly to bring political attention to key issues surrounding MS. This may take time, but it can be achieved if individuals and small groups of people engage personally with political influencers and keep pushing, pushing, pushing until things start to change. In the UK, the current blood scandal enquiry is an example of the determination of affected individuals to uncover the truth about what is described as the worst treatment disaster in the history of the NHS. We can learn from their example.
We were pleased that MS Brain Health had the opportunity to exhibit at this fantastic event, and encourage people with MS and MS Brain Health champions to look out for similar, local opportunities.