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#ThinkHand campaign could be a game-changer

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:

  1. 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.
  2. 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.
  3. To survey UK MSologists’ attitudes on the importance of hand function in MS.
  4. To perform a clinical trial to study the effect of subcutaneous cladribine in MS wheelchair users (CHARIOT-MS study).
  5. To challenge NHS England guidelines for stopping disease modifying therapies when people with MS develop secondary progressive MS and/or start using a wheelchair.
  6. To get the pharmaceutical industry to do trials in more advanced MS, focusing on hand and arm function as the primary outcome.
  7. To validate the 9-hole peg test as a primary outcome measure in clinical trials.
  8. 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

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#ThinkHand – Understanding why hand function is important for staying independent

Q1. What does it mean to be independent? For me, it means not having to rely on others in order to perform everyday tasks that many of us take for granted.

Q2. What is the thing that scares me most about having multiple sclerosis? It’s losing my independence.

I was diagnosed with MS aged 28 in 2008. If someone was to ask me what is the most important functionality for me to retain when living with a disease that can affect any part of my body, I’d say it was arm and hand function (although admittedly it does share a platform with vision!). Hands have the ability to keep me independent. Even if I was to lose complete use of my legs, at least with my arms and hands still functional I would be able to operate a wheelchair, feed myself, clean myself, type on the computer (very important for my job!), dress myself, cook for myself, drive a car….. the list goes on. I’m not alone, a survey by the Bart’s MS team shows that ~95% of people with MS rate their arm and hand function as being more important to them then their lower limb function.

The #ThinkHand campaign being undertaken by the MS team at Bart’s makes independence a central issue. Why? Because currently hand/arm function isn’t used as a primary outcome in clinical trials for disease modifying therapies (DMTs). Instead, it’s walking ability that is used to see how effective a drug is. Consequently, people with advanced MS who use wheelchairs are currently unable to participate in clinical trials of DMTs, even though evidence suggests that the course of MS can be modified at nearly every stage of the disease, including in people who, as a result of the condition, need to use mobility aids (e.g. canes, crutches, wheelchairs etc.).

The #ThinkHand campaign seeks to effect change, with the eventual goal of getting a trial funded to test a DMT in people with MS who use wheelchairs, using hand function as a primary outcome. The aim would be to preserve as much upper limb function as possible. If you’d like to know more, visit the Bart’s research blog and sign up for the latest news. Keeping people with MS as independent as possible should be an aim of everyone involved in treating people with this condition. So, use the #ThinkHand hashtag on social media and encourage people you know to get involved!

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