Wednesday, 13 September 2017

#GuestPost: taking the MS Society to task (2)

Walking-the-talk; did Patrick manage to walk 1km? #GuestPost

Some of you would have read Patrick Burke's guest post, from the 24th July, when he criticised the MS Society for organizing a sponsored walk with 3 different lengths of 6km, 10km and 20km. Patrick was upset because he cannot walk unaided and it takes him about 45 minutes to walk 1km. He urged them to organise walks of 1km and even 500m, which would allow people like himself to participate. He was upset that the MS Society seemed to be discriminating against people like him, the very people they are meant to be helping. This was particularly galling for him because the MS Society actively recommends exercise for pwMS. 


Patrick, therefore, took it upon himself to walk-the-talk and completed a 1km sponsored walk with Parallel London. By doing this he successfully raised over £1300 for his local MS Cente. Please note it took him 46 minutes to walk 1km, about the same time it takes abled-body people to run 6km or even 10km.

Well done Patrick we are very proud of you and in the process, you have given the MS Society a black-eye and hopefully motivated an army of MSers to take up the challenge. I think we need to set-up an MS Olympics to celebrate what pwMS can do against all the odds.  


If you want to read about Patrick's walk he has done a post on the event on his own website Aid4Disabled.  


Patrick Burke was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease turned into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and setup the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for disabled people to improve their quality of life. Patrick is also a member of the Barts MS Advisory Group.

23 comments:

  1. Well done and what a remarkable achievement. I hope the MS Society is doing some about this issue. Can we still donate money?

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    1. I think you can still donate via the following website: https://give.everydayhero.com/uk/patrick-1

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  2. Very inspiring. It clearly took a lot of effort to complete the 1km. I suspect more effort than a normal person walking 6, 10 or 20km. Well done.

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  3. This is just the MS society playing true to form. I wonder how many people with MS work of the MS Society? I suspect if they involved people with MS in designing their fund raising events this oversight would not have happened.

    Well done Patrick, you are a real MS hero.

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  4. Great, everything that gives visibility to a problem will lead to solutions, good initiative. I also think its important to feature pwMS with no visible disability in early stages or with less aggressive MS history... There's so much to fight for.

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  5. I think we should nominate Aid4Disabled and Patrick for MS website and MSer of the year, respectively. Do you think the MS Society would be willing to consider him for an award?

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    1. Re: "Do you think the MS Society would be willing to consider him for an award?"

      The 2017 awards have already been announced:

      https://www.mssociety.org.uk/ms-society-awards-2017#MS Professional

      You can nominate him for the 2018 awards. Are you going to do it?

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  6. This is the equivalent of institutional racism. I suggest the MS Society has an internal review of their processes to make sure this sort of discrimination never happens again.

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    1. Re: "This is the equivalent of institutional racism."

      I disagree. The MS Society have explained their position as a comment on Patrick's guest post. I know a lot of their staff very well including Michelle Mitchell, their CEO, and I have no doubt about their commitment to MS. I am sure the MS Society will address Patrick's concerns and arrange appropriate fund raising events for their more disabled members.

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    2. Agreed. Its often difficult for patient associations, especially those who's charter is MS or Lupus and others. The impact of the condition can be ultra wide and varied and numerous concerns exist including those of libel and then some.

      The UK MS Society is a very committed organization. Most folks dont tend understand the nature of not for profits like those for illness. The needs always outweigh means and so much more.

      We've had contact with many, Michelle is a Gem.

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    3. "Ms UnitesThursday, September 14, 2017 7:03:00 am
      Agreed. Its often difficult for patient associations, especially those who's charter is MS or Lupus and others. The impact of the condition can be ultra wide and varied and numerous concerns exist including those of libel and then some."

      Huh? Very difficult for them? lol

      Because they needed a person with SPMS to explain the difficulty associated with achieving a 6km walk with a rollator (or a wheelchair)?

      just because they say they will try better to use more common sense in the future doesn't actually mean it's very difficult for them lol.

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    4. No, not that they need explain the difficult associated with a 6km walk with a rollator or wheelchair.

      There are many considerations. Liability for one. Relations another, many a patient (including me) would consider it irresponsible for a patient association to allow someone with severe ambulatory dysfunction walking to raise funds for them.

      What happens if a patient falls over, breaks bones or goes into respiratory failure? Ambulance arrives at the walk. Does anyone think the media/press is going to be kind about it? Nope. They will display it as irresponsible to even allow it.

      All MS entities be that the patient associations or independent operations such as us appreciate the fact patients want to be activated, help others, fund research, perform outreach and more.

      In the same frame of mind its just not that simple. The patient community is fractured with many entities itching to assault organizations. Media? The only thing better than a human interest or cure story is one where they can go, "Oh my gosh! Look at this! Woman falls over, in ICU fighting for her life after allowed to walk 1km in 88 degree heat by charity!"

      These entities dont care. They dont care about patients or a particular patient. They care about elevation of self or in the case of media, page views = money.

      Go email these news entities even w/ MS writers and ask them show their contributions monetary to patient associations .vs. revenues brought inwards. Assure you that you will be surprised.

      How so do I know? Cuz' met a fella worked for a very popular one. Paid near $30,000 more than would get paid elsewhere, its pay for silence type thing.

      Should patient associations create events that grant access to all patients? Absolutely. Is it simple? Not really and many details may exist. Perhaps ambulatory patients need be kept apart from those not for safety concerns given an event. So now, there is a clear partitioning again that might make patients feel that.

      That said, patient associations tend always need volunteers. Lending oneself towards helping a local chapter may well be more beneficial to everyone than walking 1km and raising funds. That might be teaching an art class or helping with mailing asks or even organizing events.

      While often many may volunteer to run, walk, bike the lions share do not engage in helping out daily or weekly and it can make a big difference.

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    5. Huh? Are you actually for real?

      "Oh my gosh! Look at this! Woman falls over, in ICU fighting for her life after allowed to walk 1km in 88 degree heat by charity!"
      - Uuuuummm. "Allowed"? Sorry? Are people with MS not allowed to make their own decisions like the rest of us? Seems to me Patrick's message is not getting through....

      Can you link me to one example of an article about a mean evil charity (MS or otherwise) that was slammed by the media for "allowing" participation and being liable for injury as a result?

      The breast cancer societies organise walks so that everyone, even those in wheelchairs (usually from weakness associated with treatment) can participate - even if they have to be wheeled by someone else. Like all other organisations, they have (or should have) public liability insurance and a liability disclaimer written by a clever lawyer. Otherwise, why let people with MS, sorry, MS patients, undergoing immunosuppressive treatment participate in public events at all - they might catch something and die and well, that wouldn't look good. Ban 'em all?

      MS societies are not patient organisations - they are (supposed to be) organisations whose main stakeholders are people with MS. Why are you calling people with MS patients in the context of a charity event? I would have thought that they are people... entitled to choices. Your job (if you have anything to do with a charity) should be to support their choices and ability to make them, not decide exactly what they should be doing?

      Art classes and volunteering? I don't know about that, they might have tremors and stab themselves in the eye by accident with the paint brush - and that just wouldn't be a good look for a charity, would it?

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  7. Where does patients confidential rules apply on this page ?

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    1. Patrick disclosed his own history when he volunteered to write a guest post: https://multiple-sclerosis-research.blogspot.com/2017/07/guestpost-taking-ms-society-to-task.html#comment-form

      The only difference, between this post and the previous post, is that I edited his short biography to read in the third person. Patrick also describes his medical history in some detail on his website.

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  8. It is only too easy to condemn the MS Society. Yes like any organisation they have their good points and bad points. They have invested significant amounts of money into research. MS-SMART and MS-STAT2 trials are two current examples.

    I was merely pointing out that they have excluded many people who would like to do a walk and raise some money for them. 6 K is far too far for so many people with progressive MS. I do think they need to be more inclusive.

    Incidentally I plan to do the 10 distance on my Travelscoot (mobility scooter) for pleasure and the opportunity to meet other people and talk with them. Look forward to seeing some of you there

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  9. If you want to read about my walk then go to http://www.aid4disabled.com/parallel-london-sponsored-walk/

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  10. I am 17 years post diagnosis with Aggressive Relapsing Remitting MS. I just saw this film this morning in Toronto at TIFF. I would like to share this trailer and encourage everyone to see it when it becomes more widely available
    http://www.calgaryfilm.com/films/2017/living-proof

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    1. Is this film about diet, supplements?

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    2. The film features the son of the creator of the best bet diet from what I understand.

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    3. This film is about how Matt Embry has used diet and exercise to manage his MS it also discusses many treatment options and their outcomes. I highly recommend it. See http://mshope.com/ It is a game changing movie.

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  11. Hello everyone - we’ve commented on previous blogs about the MS Walk, and we’ve spoken to Patrick directly about it too, but in case you missed it, the MS Walk is a great way for the MS community to come together, show support for each other and fundraise to make a difference. It is intended to be a fun, sociable day out as well as an opportunity to take on a fundraising challenge, raising funds to improve the lives of people who are living with MS. Patrick himself has actually signed up and we’re looking forward to meeting him and everyone else who is coming along to the event this year!

    The event itself offers a 6km, 10km and 20km route, and each route is circular and fully accessible, meaning that everyone taking part can start and finish together and people are welcome to use wheelchairs, scooters and other mobility aids. The routes start and finish in Battersea Park (where there is Blue Badge parking is available) and there is also scope for participants to do an even shorter length (perhaps 1km or 2km) if they so wish. We fully understand that this type of event may not be suitable for everyone, but based on feedback from the MS community and our supporters, we have worked hard to make the event accessible.

    As a community event, the circular shaped routes means that most importantly, everyone can celebrate together, regardless of their challenge. We are also very happy to talk through options with anyone who would like to complete an alternative or shorter distance.

    Further details are available at www.mssociety.org.uk/mswalk. We’re also happy to provide more information or answer any questions – please contact us at challenge@mssociety.org.uk or call our Supporter Care team on 0300 500 8084. Many thanks, MS Society

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