Last month, I was one of the guest speakers at the Patient Information Forum conference talking about our experiences of Involving Users in Developing Health Information. Professor Theo Raynor, University of Leeds and Luto Research, set the context for the day and his presentation addressed how involving users is not just the right thing to do – it makes a real difference; and how ‘expert’ patients and ‘real’ patients both have a role to play in developing good information.
Trishna Bharadia, who was diagnosed with multiple sclerosis in 2008 and has since become an award-winning advocate, talked about her experiences of accessing health information and being involved in the development of health information from a patient’s perspective. In particular she gave an example of a case study on developing a Living Well With MS course for Sue Ryder in Nettlebed.
I spoke about how MS-UK uses a number of methods to engage with our clients. For example, our Virtual Insight Panel (VIP) helps us to review our Choices leaflets and our clients also provide us with real life quotes to bring these resources alive. We also consult with our VIP’s on other organisational decisions to ensure that we are listening to the voices of those that are affected by MS and using them to inform our work.
Earlier this year we also set up a Steering Group for our wellness centre, Josephs Court in Colchester, Essex. This group is made up of seven clients who volunteer their time every other month to meet us. These meetings enable us to consult with them about our plans, listen to their ideas and those of the clients of Joseph Court who they represent.
Overall, the key message I came away with from the conference with was that MS-UK needs to introduce a face to face user testing group to further improve the way we develop and produce our Choices leaflets. I am certainly excited about how we can incorporate this into our processes and continue to demonstrate our commitment to our mission and values which include providing high-quality, accessible and relevant information.
If you would like to join our VIP, register your interest at www.ms-uk.org/vip.
Diana Baxter, Head of Services
Hi everyone, Tomorrow we'll be closing our Choices leaflet survey, so if you would like help us shape them please do complete our short survey! The questions are about complementary therapies, Personal Independence Payment (PIP) and cannabis and MS. Please be assured that any comments you give us will remain anonymous when published in our Choices leaflet. Thank you for your help! Best wishes, Diana Diana Baxter, Head of Services
Summer has finally arrived and what great weather we are having…perfect running weather!
Team MS-UK stands at 25 runners for the British 10k, but we need more! Come and join us, and every penny you raise will help us make a difference to people affected by multiple sclerosis (MS).
You have until this Thursday 29 June at 12pm to join our team…our minimum sponsorship is £200…so that’s just 20 of your friends sponsoring you £10 each. £200 could pay for over 100 newly diagnosed booklets for people diagnosed with MS…that’s the difference you could make by taking part in the British 10k!
The British 10k is the ultimate foot-tour of London. You’ll take in landmarks from Piccadilly to Whitehall whilst running the route that races past Regent Street, Trafalgar Square, Embankment, Westminster Bridge and Westminster Abbey.
There will be music at every kilometre along the course to keep you motivated along the way…and of course, we’ll be there to cheer you on! Family and friends are welcome to join our cheering point, and it’s a brilliant morning out in our capital.
Email me or give me a call on 01206 226500 and register now!
Well, the evening is nearly upon us…tonight we will be celebrating at our annual Summer Ball!
For the fifth year, some hundred people will gather in the heart of Constable Country to enjoy an elegant evening of fine dining, live music and of course dancing until dawn.
Each year, MS-UK is overwhelmed by the support of companies who donate items to our auction and raffle. Tonight we have so many wonderful treats in store for our winners, including crafty goodies from Do Crafts, McCall Pattern Company and Search Press. We have yummy treats from the Cardamon Tea Lounge & Shop, Retro Corn, tastecard and Colchester Brewery. There is something for the gentlemen too, who can win a beard kit from Mo’s Bros and men’s toiletries from Chemist Direct.
No raffle would be complete without the chance to experience some fantastic days out. A big thank you to everyone who donated these, including the East Anglian Railway Museum, the Thursford Collection, St Peter’s Brewery, the Arch Climbing Wall, Colchester Castle and Brit Movie Tours. Our guests will even have the chance of enjoying some beginner swing lessons with Swing Patrol!
The main event of the evening is our auction. A huge thank you to Ufford Park Hotel, Golf & Spa and Brickendon Grange who have donated golfing prizes. Bidders could also enjoy a Glamping experience with Browning Bros, a stay at the Orwell Hotel or pick their own treat by winning a Red Letter Day voucher, kindly donated by Mintel.
The generosity of these donors and our guests tonight ensures MS-UK can continue to support people affected by multiple sclerosis, and that’s what it’s all about. Thank you to everyone involved, for helping us be here now and in the future.
Now it’s time for us to get our dancing shoes on!
Many people with MS are experiencing a temporary worsening of symptoms during this current heatwave. You might feel fatigued, or experience an increase in pain, or feel cognitive symptoms are worse. A change in body temperature can also give rise to Uhthoff’s Sign – causing blurred vision. See Visual Symptoms Choices leaflet.
Although uncomfortable, such symptoms are temporary and will resolve when the body is cooled down.
Air conditioning can be very nice but if that isn’t available then a fan in every room is a second best. Items such as Kool-Ties and Cooling Vests can be helpful. The Kool-Ties work for up to three days by cooling the whole body and particularly the blood flowing to the carotid arteries. Cooling Vests have special cooling crystals incorporated into the material and are soaked in cold water, holding the temperature for a substantial period of time.
Other strategies to help keep cool in hot weather include taking regular cold drinks, wrapping a damp towel around your neck, using ice in a tray of water in front of fan to create an air-conditioning effect.
In May we continued the series of guest blogs from Robert Munns. Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis. In this series, Robert is taking us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. So, time for the next installment…
Ah yes, deep deep in the South Pacific waving goodbye to the dark clouds of accepting MS into my life....
As I said before, going on this long trip was a challenge for me. I wanted to catch a fish, kill a fish and cook a fish. I wanted to climb the mast and learn how to use a sextant.
None of that happened! instead I went in an odyssey of discovery and acceptance. I wrote and listened. Being in the Pacific heaven that I was inspired me to write the following. ( this is an excerpt from my on board blog which is still available on www.sailingsclerosis.org)
'My future is still very unclear, at the moment, I like it this way....the more time that is spent on this vast ocean, slowly consuming the hours and miles ahead of us, my mind wanders back to the Mediterranean.... mia secundo casa :) I appreciate the wealth of experience and knowledge that my time on board Big Smile gave me.
My flirtation with MS took away this confidence and sent me down a path that maybe wasn't the best available. To the people that I let down during this time, I am sorry :)
I hope to jump back into those Mediterranean waters again soon. I enjoy life at sea, in all forms: For example, making everyone on board feel safe, comfortable and happy, fixing a lunch at anchor, dealing with tiresome customs officials, washing the boat down, negotiating for a berth in an exclusive marina, sourcing spare parts or even just buying the right tomatoes from the local market.
These are all things that I am good at and I really miss doing them. As we draw nearer to our destination. Over 3,500 miles since Galapagos. As the moon has come out from behind a cocoon of clouds to the East of us, I've spent a little time thinking. I'm feeling a lot more at ease. I'm feeling a lot less distracted and unfocussed. I am clearly still battling towards a new section of my life, a section where contentment has to be sought out and pursued with vigor and passion. I will strive to move towards that goal. I do however need to put this MS into my own perspective. At present I think of it as a rat in my flat, hiding under the floor boards. It’s not scurrying around making noise, or coming into my kitchen to eat my food and defecate on my table, but I know it's there.. silently seeking out a space that it can squeeze through and invade my life again. I don’t like rats.'
I promise more tails of adventure next time
If you have a diagnosis of MS, it would be great if you could take our quick survey and let us know about your experiences. The questions are about complementary therapies, Personal Independence Payment (PIP) and cannabis and MS.
Please be assured that any comments you give us will remain anonymous when published in our Choices leaflet.
Thank you for your help,
Head of Services, MS-UK
In her new guest blog Chloe Metson talks of dealing with depression...
People often ask how I cope with having MS, and truth be told, it’s rarely the MS that is the problem. Of course, living with relapsing remitting MS can be extremely tough, what with it’s up and downs, but no, the thing I find hardest about living with MS is the depression.
MS and depression go hand in hand for a lot of patients. Whether it is caused from living with a highly stressful situation, or actually physically caused by the MS itself, for me it’s undoubtedly the most difficult thing to cope with. It consumes me, and I become a shadow of my former self. Usually happy-go-lucky, this change is particularly hard for family and friends.
If you’re lucky enough to have never experienced depression, let me try and explain what it feels like.
Depression is darkness and fear that is targeting you as a person, and as far as you’re concerned, no-one else. It becomes sort of a cloak that others can’t penetrate and you feel it protects you from others. It completely numbs you in such a way that the only emotions you are capable to feeling are the horrible ones, and the only thing that alleviates it is sleep when you can get a break from the aggression going on in your head.
I’ve been at that point where all hope is lost, because it takes over and consumes you, and it’s the hardest thing I have ever dealt with. It felt so tempting to take the option to give up on things completely, because it was so utterly exhausting having to battle it. But I fought on and came through the other side.
I’ve been living with MS and depression for 16 years now. I believe I’m over the worst of it as I have no trouble in focusing on the future and the positives of my life, thank goodness. MS throws up it’s challenges, but at least I feel like I can cope with them now. But how did I reach this point? Firstly I learnt to be kind to myself. I took the time to rest if I could, and did nice things for myself, even if they were only small. I stopped beating myself up over negative thoughts. Depression is an illness and it deserves the respect of one. If you had a broken leg you wouldn’t be reckless and run around on it, so I learnt to respect my mind and give it the space it deserves. I tried to focus on the positives and the little sparks of happiness in life. Most importantly I’ve been trying to talk about it, and accept help whenever I can, however hard that may be.
There is such a stigma in our society towards mental illness. Perhaps if we were less unsympathetic and ignorant towards it, it would give a sufferer more breathing space and the encouragement to find the strength to battle it and allow their true selves to ignite again. Depression can be fought, and you can win the war. I’m living proof that however bad things may seem, if you are patient, there can always be light at the end of the tunnel.
If you need to talk to someone please contact our Helpline either on 0800 783 0518, or via our Live Web Chat service.
This Sunday you may be celebrating your wonderful dad as it is Father’s day, and I couldn’t resist sharing some top fundraising tips!
Why not hold a ‘competitive dad competition’ after your Sunday Roast and raise funds for MS-UK? You could get all generations of the family involved in something as simple as ‘minute to win it’ style challenges, where people pay 50p to enter. These challenges could be something like eating as many cream crackers in a minute to picking up smarties with chopsticks. Get inspired with this YouTube video.
To get you in the mood, here’s one of my favourite ‘minute to win it’ games, expertly demonstrated by father and son, Ben and George…
Cotton Ball Nose
What you’ll need…
How to play…
Place cotton wool balls onto one paper plate. Players put a blob of Vaseline onto their noses and put their hands behind their back. They then have to transport the cotton wool ball to the other plate by using only their nose. Only one cotton wool ball can be moved at any time! They have one minute to transfer as many as possible. Whoever moves the most is the winner.
Good luck everyone, and happy Father’s Day!
Our fundraiser of the month this month is Wendy Cole, who ran a 100k ultra challenge for MS-UK on the 27 May!
Hi! My name’s Wendy Cole. In August 2015 I took part in my first 100km ultra challenge, London2Cambridge. I’m a runner who fancied a change, so decided I would walk the route. I enjoyed the experience so much that I decided pretty quickly that I would take on another challenge, this time the London2Brighton 100km challenge on the 27 May, raising funds for MS-UK.
Back in 2014 I was very fortunate to receive a charity place with MS-UK in the Virgin Money London Marathon and found them so supportive prior to and during the race that it was a pleasure to get the opportunity to raise funds for them again.
I lost my Mum in 1997 at the age of 50 to Primary Progressive MS, so this is a cause very close to my heart and it’s great to be able to raise awareness of this disease and the work MS-UK do, supporting those affected by MS.
So, in July last year I signed up for London2Brighton in memory of my Mum. I knew I’d completed the distance before but also knew that this challenge would be much hillier. Too right it was!!! There’s a particularly huge hill at 88km, just where you don’t need one.
Again I decided to walk this ultra. I’ve run 11 marathons and 32 half marathons and found walking with a full rucksack quite different from running. You’re on your feet much longer, which is tiring, and you’re using different muscle groups, so ache in different places.
In the lead up to the big day, my training consisted of running three marathons, Brighton on 09 April, London (guide running with a visually impaired runner) on 23 April and Stratford on 07 May. I wouldn’t necessarily recommend running three marathons in five weeks!! I also walked the canal route from Worcester to Birmingham (28.4 miles) two weeks before the challenge.
At 8am on Saturday 27 May I set off from Old Deer Park in Richmond with just over 1500 other eager participants taking on the full challenge. The heavens opened just 0.6 miles from the start, but the rain stopped by the time we’d got our macs out. It was then dry for the remainder of the challenge. We walked day and night, on road and off road, over numerous stiles, taking in short refuelling stops every 25 kms or so at the checkpoints until we reached our final destination at Brighton Racecourse at 7.06am…still smiling, and for me, blister free.
I’m delighted to have exceeded my fundraising target of £300 and would like to thank Nick Adams from MS-UK for regularly making contact with me, offering support and generally seeing how my training was going.
My recovery’s been good. Two days after the event I felt pretty normal again and even managed to wear a kitten heel to work!!
I often wonder what my Mum would think of me now. I was a total couch potato until I hit the age of 40, so she has never seen any of these achievements. She’d probably think I was bonkers!!
Anyway, time for a little rest now…until the next challenge. I’m running New York Marathon in November and Tokyo Marathon in February, so will have a few weeks off over the summer until training starts again.