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22nd May 2013 by alice.hamilton
Healthcare and care assistants can be the most important people in providing basic care at home or in hospital, such as help with eating, drinking, toileting, washing and dressing.
The government launched a review, headed up by Camilla Cavendish, into how healthcare and care assistants should be trained, and whether they should be formally regulated, the way that doctors and nurses are. You can read what we said here:
No date has been set for the Review to publish findings.
17th May 2013 by stephen.trousse
Most people with MS will come across this situation at least once in their life after diagnosis. You meet a work colleague of your partner’s and 
have to make small talk and you end up talking about MS. The work colleague turns out to have a fabulous friend who also has MS, but it went away for a long time but recently it’s come back and has targeted their eyesight, and they are now registered as blind. But they are still working with their husband in their own business and being a productive part of society. They then go on to tell you how there’s a job out there for everyone and since you can’t get a job that requires going out to work, maybe you should try working from home, filling envelopes or making badges?
At the time I was so astounded at the ignorance, arrogance and rudeness I was at a loss for words. But mulling it over later at home these things came to mind.
That’s not too surprising. There are over 2.1 million people across the world with MS, it’s really not that uncommon.
The symptom you are aware of is probably just the tip of the iceberg. For every bit you see above the surface there’s another 90 percent going on under it. Unless your friend is a gobby mare like me she’ll probably not tell you about it even if you ask!
Think about the person sat across the table from you. Before holding a friend up as a paragon of good living with MS, have the decency to ask the person across the table from you how their MS affects them.
If you know one person with MS that’s all you know. If your friend is vocal about their condition you may know about a few of their symptoms but you still only know one person with MS and a tiny portion of what they experience of life with their MS. I have MS. I live with the iceberg of symptoms in all its glory every single day of my life and I know exactly how my MS effects me. But I don’t have a clue of my friend Meg’s experience with her MS or of how anyone else with it experiences it as it is individual to each person with MS. If I have it and I don’t know how it affects others then you aren’t in the best position to be offering advice.
Ask people like me who are quite happy to tell you in clear terms what it means to live with a progressive, degenerate and mostly invisible disorder. Most of all, listen and learn because your friend with MS deserves that from you. Your friend might struggle to put their experiences into words or they might find it difficult to talk about. One person’s experience MS is very different from another’s. Everyone is wired differently. How I experience pain is not relative to how you do.
I’ve spoken a lot about the ‘do nots’ here, but there’s only really a couple of‘do’s’ you need to remember. Do ask questions and do educate yourself so you understand better what people with MS have to live with.
14th May 2013 by helena.jidborg
Fate tapped me on the shoulder in a room at the National Gallery in London’s Trafalgar Square.
It was the room where the Titians are, and, even if it sounds like Pseuds Corner in Private Eye, I was analyzing Titian’s late masterpiece “Diana and Actaon”.
Symbolic, perhaps, because in the myth Actaon is an innocent man struck down by Fate.
In my case, the shoulder-tapper was my 32-year-old son. Which came as a surprise, as he lived and worked in Manchester at the time.
“I’ve got something to tell you, Dad,” he said. “Can we go somewhere quieter?”
There was an underground wine bar I knew just across the road. We had a drink, and then my son told me he had been diagnosed with MS.
That was in 1992. Although I was working full time in my own business then, I had also started a two-day-a week course at art school. Six years later, when I was 69, it would lead to an Honours Degree in Fine Art, and I became a working artist. Hence Titian.
As my artistic training began, so also did my association with MS.
It was only natural, then, that when an artist friend in Yorkshire told me about the Secret Art Show that I would want to be a part of it.
At the time that my son was diagnosed, there was no successful treatment and little hope. Now there are both.
Though he now uses a wheelchair, my son holds down good jobs, travels widely, has fun, and is in trials with a new drug at London’s Hospital for Nervous Diseases in Queens Square. I can’t think of a better cause to support than the MS Trust.
Here is some of my work. Can you guess my picture in the Secret Art Show?
Brian Palmer
5th May 2013 by stephen.trousse
It’s been a long, busy, exciting week. It all kicked off with our patrons Jackie and Laurence Llewelyn-Bowen appearing on ITV’s Lorraine show to talk about the work of MS nurses on Monday morning. We’ve seen Be Bold In Blue events take place throughout the week, all over the country, raising vital funds for our MS nurse support programme. We’ve announced MS nurses Miranda Olding and Lindsay Harrison as the joint winners of our incredibly successful ‘My Super Nurse’ campaign. And we’ve highlighted the work of MS specialist nurses and how the MS Trust is helping them to demonstrate their importance, impact and value to NHS managers and commissioners.
Thank you to everyone who has join in this MS Awareness week. Whether you’ve held a Bold In Blue event, voted for a Super Nurse or just spread the word, you’ve played a massive part in making this week such a success. We’re hugely grateful.
So MS Awareness Week is over but the work of the MS Trust doesn’t stop here. This week the latest issue of our newsletter Open Door is mailed out, in a new, expanded format, with news about our latest research project into people’s experience of secondary progressive MS. Our work to support MS nurses continues and very soon we hope to announce some exciting news about the future of our GEMSS project.
On Tuesday morning our free phone information service will open as usual, answering all your MS questions and queries. The information team will be busy revising and preparing new resources for everyone affected by MS. Our web team will continue updating and developing our ever-growing, ever-more-useful website. The education team will be hard at work organising our next MS nurse conference. And our fundraisers will be planning all the latest opportunities, from the MS Circuit Challenge at Goodwood to the Trek to Kilimanjaro, for people to raise funds to support our work.
Because MS doesn’t stop, neither does our small team here at the MS Trust. For us, every week is MS Awareness Week. With your help we will continue to strive to make life better for everyone affected by MS.
4th May 2013 by stephen.trousse
The latest issue of our newsletter Open Door has now left the mailing house and should be arriving on your doormats and in your in-boxes any day now. We’re all very excited about the first edition in the new, expanded, magazine style.
With the sun finally coming out, we’ve focused on issues around staying active with MS (including how to manage fatigue). We have a round-up of ideas for summer activities, from archery to paragliding. There’s a report by NHS Shetland physiotherapists Margaret Gear and Ruth Mahood on an innovative way of making exercise accessible for people with MS. There’s an article by Jane Dunham, who rediscovered the pleasures of horseriding after being diagnosed with primary progressive MS. We talk to MS Trust fundraiser Kenny Smith about how he came up with the idea of the MS Circuit Challenge at Goodwood. There’s a Q&A with Mr Motivator. And there’s the usual mix of MS news, research updates and practical tips.
Having spoken to many readers online and through surveys, we’ve tried to retain all the elements you appreciate about Open Door and make the whole publication even more readable, more interesting and more useful. With more pages, more features and more pictures, this issue is hopefully a first step on that path. We’re very keen to hear your thoughts on the new style. We’ll be sending out a reader survey in the coming weeks, but in the meantime if you have any comments please write, email, tweet or leave a message on our Facebook page.
If you don’t yet receive Open Door, there’s still time to sign up to receive the new issue – simply fill in your details on our Sign Up page. If you’ve recently moved (or changed your email account) give us a call on 01462 476100 and we’ll make sure it’s sent to the right address.
3rd May 2013 by stephen.trousse
Although Friday is the end of the working week, MS Awareness Week continues right through to Sunday 5 May – and Bold In Blue events will continue right through the month and beyond. So there is still plenty of time to to get involved and make a difference!
It can be as simple as wearing a blue wristband to show your support. Or you could hold a Bold In Blue event like many of our supporters. If you haven’t planned anything yet don’t worry, you can always help by organising something later in the year – find out how you can Be Bold in Blue.
We’ve received word of hundreds of Bold In Blue events taking place around the country this week. Here at the MS Trust’s offices in Letchworth Garden City we kicked off the week with a Bold In Blue lunch featuring a very special guest appearance from our fundraising mascot, Bob!
Staff at Biogen Idec’s offices in Maidenhead have been holding Bold in Blue events all week.
The Information for Families team at East Sussex County Council in Lewes held a BBIB day and raised over £800 by selling cakes, a raffle and dressing blue.
MS Trust supporter Chris Wilkinson from Attleborough in Norfolk held a static bike ride and has raised almost £1,000.
The team at Spirax Sarco in Cheltenham held a Bold In Blue baking competition and raised over £140.
Liberty London Girl is holding a cake sale today at Foxton estate agents in Camden
Meanwhile Glyn Brackenbury has embarked on a epic kayaking journey from Lands End to John O’Groats! He’s currently at Anglesey – you can follow his progress at his blog.
So far this our Bold in Blue fundraisers have raised over £5,000, and, with lots more events planned for this weekend, there is even more to come!
All funds this year go towards the MS Trust’s nurse support programme, in particular our campaign to help roll out the tools we developed on our pilot programme, helping nurses generate evidence for the impact of their services. To read more about our work safeguarding the future of MS nurses, and to find out how you can help read our blog post.
2nd May 2013 by laura.percival
This is a guest blog by Fittleworth Medical
We at Fittleworth Medical describe ourselves as a local company with a small budget but a big heart! We’re delighted to be one of the Gold sponsors of the MS Circuit Challenge, and are looking forward to taking part in the event at the Goodwood Motor Circuit on Sunday 12 May.
We approached the MS Trust about supporting the MS Circuit Challenge at Goodwood because we are a local company committed to supporting our community. We have previously enjoyed taking part in a dragon boat race for charity and thought it was time to get involved again, particularly as we have colleagues who have MS. We heard that the MS Circuit Challenge is a great day out for all the family and decided that this year we’d like to join in the fun!
Fittleworth Medical, based in Littlehampton, was founded in 1984 and has been in West Sussex since 1994. We specialise in home delivery of stoma, continence and wound care products, priding ourselves on providing a discreet and reliable service. For more information about Fittleworth Medical, please visit our website.
We’re currently organizing an Information Day in Ipswich on Saturday 18 May – see invitation (pdf). Places are limited and need to be booked in advance by calling Sue Goodchild at Fittleworth on 01903 311007.
2nd May 2013 by alice.hamilton
NICE is appraising BG-12 and teriflunomide as possible treatment options for relapsing/remitting MS.
The appraisal process is in its early stages. We responded to the draft scopes for both drug treatments. A big concern was that NICE included a comparator of ‘best supportive care’, which was not defined and which we felt was unfair.
You can read what we said here:
We are delighted that the Final Scope for both BG-12 and teriflunomide contains no mention at all of ‘best supportive care’.
2nd May 2013 by stephen.trousse
As you may have noticed, for this year’s MS Awareness Week we have been focusing on the work of MS specialist nurses. Yesterday we announced the winners of our ‘My Super Nurse’ campaign and all week we’ve been highlighting the impact MS nurses can have on everyone affected by MS.
At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, MS specialist nurses also save money for the NHS by keeping people out of hospital. We estimate that a single MS specialist nurse, with an average caseload of around 250 patients, can save the NHS around £65,000 a year.
However, in recent years we’ve had to step up our work. As health budgets grow tighter, specialist MS nurses are under increasing pressure to demonstrate the impact of their work or risk having their funding removed. Some nurses have been asked to return to ward work, while some positions have become vacant (due to leave or retirement) and not been filled.
This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.
Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service.
The pilot was a huge success, and has already been instrumental in keeping at least one nurse in post. Last month we spoke to Michelle Strode and Caroline Chandler from Dorset about their experience of the GEMSS project and the difference it’s made to them. You can watch the interview below.
We’d like to roll out this project so that all MS nurses have access to the tools we’ve helped to develop. But we need your help. That’s why all funds raised from this year’s MS Awareness Week Be Bold in Blue events will go towards our nurse support programme, helping us to safeguard MS nurses now and for the future, to make life better for everyone affected by MS.
30th April 2013 by laura.percival
This is a guest blog by MS Trust supporter Chris Wilkinson (pictured)
Last year was a very eventful and emotional time in our lives.
My wife Tara gave birth to my newest daughter (Poppy) in April however throughout the pregnancy, Tara really suffered with constant migraines most days.
Two months after giving birth, Tara was still experiencing severe migraines and on one Friday morning whilst getting dressed, she collapsed at the top of the stairs. Upon coming around, Tara’s speech had completely gone and she felt extremely dizzy. Luckily I hadn’t gone to work yet and my initial thought (apart from panic) was that Tara has suffered a stroke. Tara (being Tara) didn’t want to make a fuss so rather than calling 999, I called the emergency NHS helpline and received a call back from an expert quite quickly. By following a number of checks over the phone, it was established Tara had not suffered a stroke, however they recommended that either an ambulance was requested or I take her straight to A&E.
After numerous tests which included an MRI and Cat scan, Tara was diagnosed with MS. Not only MS, but also a second neurological disorder of severe migraines.
Unfortunately I was not with Tara when she was given her diagnosis and will never forgot her calling me to say “Can you come and pick me up and by the way I have MS, see you in a bit!”
As you can imagine, once it sunk in, it has been a rollercoaster ride of emotions through denial, despair to “let’s just take one day at a time”. To be honest, with how unpredictable MS is, we will always be living our lives with that lingering thought “what does the future hold for us?”.
On a positive, MS has made us appreciate what we do have and we have made a commitment to make sure we make the most of each and every day, starting with renewing our wedding vows in Las Vegas in October this year.
Since diagnosis, it has hit home to me that I need to start taking care of myself so if anything does happen, I am able to look after my family. In January I made a conscious decision to lose weight and get fit as we don’t know what the future may hold. So far I have lost nearly 3 stone and am feeling healthier by the day.
Tara made me aware that the 29th April to 5th May is Multiple Sclerosis Awareness Week and could we think of anything we could do to show our support? To be honest, I didn’t know MS had an awareness week, but was more than happy to see what we could do.
So as part of my keep fit regime, I decided I would attempt to bike the equivalent from Attleborough (my home town) to Paris during March, totaling 600km. Due to work commitments and demanding children (and that Tara didn’t trust me on real roads) I wasn’t able to do this in reality, so I dusted down my exercise bike and started to peddle. Within the first week of March, I had already cleared 200km and got a little over confident and declared I would also bike the equivalent distance back again totaling 1200km.
I have raised over £1,000 including Gift Aid. Aviva who I work for have also promised to contribute to this total so I am hoping to raise well over the £1,000 in total.
By doing this, it has been astonishing to find out how little people know about MS and how it impacts people’s lives. Friends, family and work colleagues have all got completely behind what I have tried to achieve and now they all understand a little more than they did about MS.
I just hope we can continue to spread awareness and one day live in a world where there is a cure. We are now thinking about my next challenge to raise funds and awareness of MS. Watch this space.
Visit Chris’s fundraising page on Virgin Money Giving
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