Some of you will have read Patrick’s older blog posts already. The following is his third post in a series about empowering people with more advanced MS to enable them to raise money for the MS Society.
Previous posts in this series:
- Taking the MS Society to task – 24-July-17
- Taking the MS Society to task (2) – 13-Sept-17
On Sunday, 24 September I went to Battersea Park in London to take part in the MS society walk. I left the house at an 8:45, caught the train to Euston and arrived at the start just after 11. I had hoped to be there earlier. Getting to Battersea Park from Euston station by public transport is not easy.
It was a lovely sunny day The MS society walk started at the bandstand in Battersea Park. Maybe I’m not very good at finding things, I had to ask several people how to get there. By the time I arrived everyone else had started their walk. There was a Zumba session at the beginning which I missed and might have made the day more exciting. I only had myself to blame.
I had never been to Battersea Park before. It was full of people and their children enjoying the sunshine and fresh air. There were people running, walking or cycling on tricycles and bicycles. Many people were wearing smart and possibly expensive exercise outfits. I felt stunningly underdressed but I was on my mobility scooter.
By the time I arrived everyone had set off on their walk. Nonetheless, I was issued with a bright orange MS society T-shirt which I put on, given some water, emergency rations and a map for the 6K walk.
When I reached the end of the walk back at the bandstand I must admit I felt slightly depressed. I saw no signs of the ‘fantastic post-event celebration in Battersea Park’. There was a steel band playing when I arrived but no party atmosphere.
Over 600 people took part that day. I couldn’t help but feel that the wrong message was being given to the public. The message on the T-shirt said ‘let’s stop MS together’. I did not see any interaction between the MS society and the participants with the general public. I saw people finish the walk and leave the park on foot.
The public must assume everyone with MS can walk and does not suffer any physical disability. I asked one of the volunteers at an entrance to Battersea Park how many mobility scooters had they seen that day. They told me they had seen about five.
MS sufferers, their family and friends know how crippling this disease can be. It took me 46 minutes to walk 1 km at the beginning of September. The public at the Battersea Park did not see the real world of MS. I suspect many of the walkers were friends or family of people with MS who were unable to participate.
Why didn’t the society arrange walks of 500 m or 1 km for people like me who are unable to walk and have to use a Rollator? It’s not difficult at Battersea Park, plenty of smooth flat road to walk on. The general public would then see the real world of MS.
I think The MS society should consider arranging their next walk using the facilities provided by Parallel London in the Olympic Park. There are distances from 100 m to 10 K. I’m sure they could have their own tent there. It is completely accessible with good car parking and excellent public transport links. Westfield shopping centre is only a stone’s throw away with shops and plenty of places to eat.
I am Patrick Burke, I was diagnosed with RRMS in 1995 but I believe the symptoms started in 1972.The disease turned into SPMS in about 1999/2000. I took medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of my MS since retirement and it also identifies a wide range of objects that are readily available and can improve quality of life. I am also a member of the Barts MS Advisory Group.
Well done Patrick you are a real MS warrior. I admire you for your chutzpah.
It reflects entrenched views and a lack of vision on the Society's part. As did my own first encounter, just after my diagnosis. The local MS Society was fundraising outside Marks and Spencers. I walked hurriedly past a serried rank of wheelchairs, their occupants tucked up in blankets and each holding a collection tin. Not long after, a friend showed me their local newsletter, allegedly written in conjunction with the MS nurse. It seemed to me it was targeted at MSers with a reading age of 6 and contained such nuggets of information as 'drink plenty of water'. On the back was a colouring-in page (and this was years before colouring-in for adults hit the high street). I want no part of any of it.
I was at the walk this year and have to say that I think as Patrick arrived late (although I totally understand because for people outside London it was a very early start and something I mentioned to the MS Society myself!) he probably missed a great deal of what was happening. The warm-up at the start was great and there were definitely more than just 5 people on mobility scooters. There were many people there in wheelchairs, on mobility scooters and using walking aids. When I got back to the bandstand after completing the walk there were many people sitting, chatting, interacting and enjoying the music and sunshine. I understand there had been an issue with two of the food vans not turning up (not the MS Society's fault) which did mean that some people ended up instead going to the cafe in the park itself to get some food, which definitely mean the atmosphere was quieter than in previous years. I've done the walk for several years and have always been asked by members of the public who I'm walking for and why, which has given me a fantastic opportunity to speak to them more about MS. One lady I spoke to who was doing the walk for the third or fourth time said she'd got chatting to one member of the public one year and it turns out that his brother had just been diagnosed and they were at a complete lost because they'd been given no information by his neurology team. So this lady jotted down some useful websites (MS Society, MS Trust etc) and he went away saying a load had been lifted off his shoulders. Personally, this year I got chatting to the security guards at the hotel I stopped off at to use the toilet. They were very lovely and not only let me use the facilities but also asked me more about why I was walking etc. I'm sorry that Patrick didn't feel that his experience lived up to expectations, however, the people that I was walking with and chatted to along the way all had a brilliant time and a good many were "repeat" walkers because they'd enjoyed it so much in previous years!I've been diagnosed for many years now and in that time the MS Society has changed a great deal, in my opinion for the better. But as with any organisation out there and any event that is put on, it's always going to be impossible to please everyone all of the time…..
I admire your dedication.Don't blame yourself for anything, you do great just getting to these events in the first place. But in a way, that's the problem. I feel I should go, fund raise etc, but I never do. I mean I've had MS for 12 years now and I'm not raising funds for my own cure. Trouble with MS society mags are that they're full of Ads for fundraising (and catheters) and examples of all the wonderful things people do to raise money, that I just feel it's not for me anymore. If there is a cure, of some sort, I'll find out about it sooner or later. In the meantime I'm not contributing to yet another small scale research project for some cure that might or might not be available in ten years' time. I do like the blog by the way, and I do like it that it won't ask me to jump out of a 'plane to raise money. Sorry to be so grouchy.