I feel like Thursday 22nd February 2018 is going to be one of those days when in years to come I’ll look back and know that I was part of what will hopefully be a game-changer in the world of healthcare. It was the official launch for the #ThinkHand campaign by the MS team at Bart’s, led by Prof. Gavin Giovannoni and Dr. Klaus Schmierer.
As someone with MS who is still fully mobile, what worries me about the future isn’t necessarily that I might need to use a wheelchair, it’s that I won’t be independent. Retaining upper limb function is critical to avoiding that situation.
Why is the campaign needed? Well (and many people, even within the MS community, don’t know this), currently NHS guidelines state that once someone has developed secondary progressive MS and/or starts to use a wheelchair, their medication needs to stop. In addition, the primary outcome measure for testing the effectiveness of MS disease modifying therapies is currently walking ability. So essentially, once you develop progressive MS and/or start to use a wheelchair, you’re written off by the “system.”
The ThinkHand launch featured three MS patients, all of whom can demonstrate why hand function is so important. One is a musician, one is an artist and one is a jewellery maker. During the evening we had the chance to meet them and see/listen to their work. It wasn’t just important for me as an MS patient to see that a change is needed, it was also important for the other attendees who came from MS charities, pharmaceutical companies and the media. Michelle Mitchell, Chief Executive of the MS Society, was the guest speaker, and it’s incredibly important to have this visible backing for the campaign from the largest MS charity in the UK.
The campaign has achieved or is trying to achieve the following:
- Get the research community to study several hypotheses that underpin the science behind the preservation of hand function in MS and to design better trials for people with more advanced MS.
- Design, test and validate an environmentally friendly cardboard 9-hole peg test to allow people with MS (PwMS) to self monitor their arm and hand function.
- To survey UK MSologists’ attitudes on the importance of hand function in MS.
- To perform a clinical trial to study the effect of subcutaneous cladribine in MS wheelchair users (CHARIOT-MS study).
- To challenge NHS England guidelines for stopping disease modifying therapies when people with MS develop secondary progressive MS and/or start using a wheelchair.
- To get the pharmaceutical industry to do trials in more advanced MS, focusing on hand and arm function as the primary outcome.
- To validate the 9-hole peg test as a primary outcome measure in clinical trials.
- To develop a new personalised or humanised outcome measure to asses hand function in MS.
If you’d like to get involved in the campaign then follow the #ThinkHand hashtag on social media.
For more information about ThinkHand: https://www.standard.co.uk/news/health/lift-drugs-ban-on-ms-patients-who-can-no-longer-walk-say-doctors-a3772906.html
For a video of the launch: https://www.youtube.com/watch?v=U0HLSq3nzHQ
To keep up to date on the campaign subscribe to the Bart’s MS research blog: www.multiple-sclerosis-research.blogspot.com
Trishna Bharadia
Trishna Bharadia is a multi-award winning chronic illness and disability advocate, with a particular focus on multiple sclerosis (MS), diversity issues in healthcare and patient engagement. She was diagnosed with MS in 2008, aged 28. She works as a Spanish>English translator but in her spare time raises awareness of and improves support/services for people with chronic illness. She blogs, vlogs, is a regular media contributor (TV, radio, online/printed press), advises on projects, speaks at conferences and events and writes articles about issues affecting people with chronic illness. She's a Patron/Ambassador for MS Society UK, Sue Ryder, ParaDance UK and the Cambridge MS Therapy Centre. As a result of her advocacy work, in 2015 she put MS on the national map in the UK by being chosen to take part in a special four-part edition of Strictly Come Dancing on BBC1, where she smashed stereotypes of people with MS and hidden disability. She loves Zumba and hockey, and her motto in life is "think about how you can do something rather than the reasons why you can't."
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