This year, MS-UK will be coming to the end of our current Strategy, and right now we're exploring what we should focus on in the next three years. But we need your help to get it right, and make sure that the wider MS community is included every step of the way!
Please take our short survey today and let us know what barriers you face to feeling happier and healthier in your life with MS. Perhaps you feel there is a vital MS service missing? Maybe you believe MS-UK could raise awareness of multiple sclerosis among the general public? We'd like to know your opinions, and use your voice to shape our work in the next three years.
Your voice matters. Thank you for sharing it with MS-UK!
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!
April is always an exciting month for us here at MS-UK as we mark MS Awareness Week, and 2018 is no different!
This year we are celebrating our newest national service, MS-UK Counselling. We launched the pilot of this service in October 2017 and since then have delivered over 150 telephone counselling sessions to people with a diagnosis of multiple sclerosis. But we want to help even more people!
At MS-UK, we believe that it’s good to talk. However, we know that there can still be a stigma around accessing counselling, and we want to break down these barriers so people diagnosed with multiple sclerosis can get the support they need.
So, this MS Awareness Week I ask you to help us spread the message that it’s good to talk! Throughout the week of 23 – 27 April we will be posting on Facebook and Twitter all about MS-UK Counselling, and it would be great if you could help us spread the word by retweeting or sharing our posts. Thank you!
Keep an eye on our blog for updates as we near the big week...
On 19 March, BBC Breakfast featured a short piece on a HSCT trial with relapsing remitting multiple sclerosis (RRMS) patients taking place in Sheffield. It provoked a strong reaction from the MS community and a lot of questions, so we’ve tried to answer some of them…
What is it and how does it work?
A variety of clinics and hospitals across the world, including Sheffield and London are trialling and practicing HSCT treatment.
This particular Hematopoietic stem cell transplantation (HSCT) trial, which has been taking place in Sheffield, America, Sweden and Brazil, involves the patient having stem cells extracted from their bone marrow. Next they are given chemotherapy treatment, which strips back their immune system to almost that of a baby and then the healthy stem cells are transplanted back into their body.
The trial was set up to test the efficacy of HSCT treatment versus FDA approved MS drugs, such as interferon, glatiramer acetate, mitoxantrone, natalizumab, fingolimod, or tecfidera.
Just over 100 patients have taken part in the trial, in hospitals in Chicago, Sheffield, Uppsala in Sweden and Sao Paulo in Brazil.
Scientists conducting the research claim they have made a significant breakthrough with this type of treatment in patients with highly active relapsing remitting multiple sclerosis (RRMS).
Patients received either HSCT or drug treatment. After one year, only one relapse occurred among the stem cell group compared with 39 in the drug group.
After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group.
Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.
The interim results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon.
Click here to read the study’s abstract - Hematopoietic Stem Cell Therapy for Patients With Inflammatory Multiple Sclerosis Failing Alternate Approved Therapy: A Randomized Study.
What is the inclusion criteria?
Participants have to be aged 18-55 and have a clinically defined MS diagnosis using the revised McDonald criteria.
Their Expanded Disability Status Score (EDSS) should be 2.0 to 6.0.
The must show inflammatory disease despite treatment with standard disease modifying therapy, including at least six months of interferon or copaxone.
Inflammatory disease is defined based on both MRI (gadolinium enhancing lesions) and clinical activity (acute relapses *treated with IV or oral high dose corticosteroids and prescribed by a neurologist). Minimum disease activity required for failure is defined as: a) two or more *steroid treated clinical relapses with documented new objective signs on neurological examination documented by a neurologist within the year prior to the study, or b) one *steroid treated clinical relapse within the year prior to study and evidence on MRI of active inflammation (i.e., gadolinium enhancement) within the last 12 months on an occasion separate from the clinical relapse (three months before or after the clinical relapse).
A steroid treated relapse will include a relapse that was severe enough to justify treatment but due to patient intolerance of steroids, or a history of non-response to steroids, they were offered but not used.
More information about inclusion and exclusion criteria can be found here.
Can I get on the trial?
Unfortunately you cannot. This is because although the trial is still active they are not recruiting.
Will it really be available on the NHS within a few months?
Dr Susan Kohlhaas, director of research at the MS Society, said the stem cell transplant HSCT "will soon be recognised as an established treatment in England”, but will it?
While this is a phase III trial testing the efficacy of the HSCT, which will be incredibly significant when it comes to gaining licensing approval, the treatment has only been formally assessed for use in the NHS within clinical trials.
There will also be a few more hoops to jump through, such as gaining approval from NICE (The National Institute for Health and Care Excellence). Although NICE does now have a fast track criteria, which enables certain drugs and treatments with the right evidence to pass through the system much quicker than we have seen in the past. Cost will almost definitely be a deciding factor. HSCT comes with a price tag of £30,000, but there are already some approved DMTs with a similar costing available to patients, so this could help justify the expenditure, especially if the treatment can halt the MS for a long period of time. We should also be mindful that a higher price point can often lead to drugs and treatments being allocated to minorities with strict criteria, rather than being rolled out for everyone.
When does the trial end?
The trial is still ongoing and its estimated end date is December 2018.
Is it really a “game changer”?
Well, it’s a great step forward for people with RRMS and it does mean there is a potential highly-successful treatment that could halt MS in its tracks on the horizon.
However, HSCT treatment in secondary and primary progressive patients doesn’t tend to be as effective and you tend to see less improvement in disability because the nerve damage by this point has become permanent.
There are still a number of questions we do not have the answer to, such as how long does the treatment last?
But maybe the biggest questions of all is if MS is genetic, the person will still have the same gene and what’s to stop the gene being triggered again and the MS returning if we do not know the true cause?
The Beast from the East has arrived! I’m recovering from a relapse (MS for sh&t!) where my mobility has been challenged, I’ve fallen several times (last time at the cinema whilst moving to let someone pass, think I deserve an Oscar for my performance!) and experiencing tons of fatigue (if I got paid to sleep, I’d be rich) so my writing is on the back burner.
I was inspired to write about how the weather affects those like me. It’s been on my mind. I have thought how reduced energy levels and mobility doesn’t wash with this weather, how limited I am but more importantly how I have to think differently and be more prepared.
The weather presents many challenges. If you flick on the TV, there are shots of the level of snow, schools closed, difficulty travelling, travel disruption and forecasts for how long we are to expect this harsh winter weather. And it doesn’t help with a storm on the way. Many other countries experience snow. They are prepared. Ours grinds to a halt, although in its defence, this harsh weather is the worst I’ve seen for a while. Little man loves the white stuff. So here are my tips for handling bad weather for those in my boat, or anyone really.
You’ll probably stay in at home. For little man, I stock up on craft kits, board games, films for indoor fun ( I can recommend Peppa’s Cold Winter Day and Peanuts movie for little man and it doesn’t drive me nuts) and books. Reading to little man is a great time filler. Ask others to buy children’s magazines if you’ve not got any in. They usually have stories, colouring and sticker fun.
When travelling, I make sure I have food, drink, toilet stuff (she wee/incontinence pads, travel potty, toilet roll, baby wipes, carrier bag to put things in, gross but true!) things to entertain little man, warm clothes and a blanket. We’ve been putting a little man’s blanket on the radiator to place on him during car journeys.
My mobility is bad and I’ve fallen a few times. The safest option is staying at home but it isn’t always viable. Slippy snow and ice isn’t great for anyone but when you have fallen and use a walking stick (doesn’t work well in snow!) this weather is super scary. I wear shoes I know that can help and am buying shoe grips.
Don’t put pressure on yourself
It’s OK to feel like you can’t be bothered. But little man is so excited. He’s seen snow before but not on this scale. I close my eyes and little man wakes me by shouting “kick a ball” or “go outside Mummy”. My husband says he’ll stick me on a sledge! (I’m thinking about weight restrictions!) It’s heart breaking when you have little energy to lift your bum off the sofa, let alone play in the snow. Give yourself a break, if you can. I’m saving energy for the weekend as my husband says he’ll be my chaperone. I’ve realised that asking for help is not a sign of weakness – so family and friends have had fun in the snow with little man, giving me a chance to recharge. I think they like it!
Protect your mind
Asking for help helps you to rest but there is the realisation that you can’t play in the snow like yesteryear. Emotions come to a head. Grief. Anger. Frustration. Envy. Social media has a lot to answer for that. Don’t get me wrong it’s lovely to see what others are doing on their snowy days but it’s a reminder that you have limited mobility. I’ve cried a lot over the last few days because I want to be the one to play in the snow with little man. I will go out at the weekend with my husband around. In the interim, try not to be alone, hook up with others whether it’s friends who can come to you (I organised a play date today), speaking to social media contacts ( I asked my local MS Society group for best shoe grips recommendations) and plan for brighter days ( I’m thinking of summer holidays).
Be more hygge
In the interim, snuggle down, grab a blanket, hot chocolate and biscuits may not be great for the waist line but I’m still scoffing and watch films. Be like a Dane until the bad weather goes away.
Stay safe everyone! I’d love to know your tips?
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In her latest guest blog, Joanne discusses preparing for her son’s start at nursery and coping with a multiple sclerosis (MS) flare…
Little man has another development milestone coming up, going to nursery.
It doesn’t seems two minutes ago, he was putting his head up, sitting, then eating real food, walking then speaking.
Little man is only going to nursery for a couple of days but it’s a big step for him, an even bigger one for me.
He was going to start this month but due to illness (me mainly, we had bugs which take twice as long for me for them to shuffle off and also I’ve had a flare up, hence little writing, sorry). I wasn’t in the right place to start. It’s about little man settling in, but also as a new routine for him, l have to be ready too.
To prepare, we’ve been reading books about starting nursery (I’d recommend Spot and Pirate Pete). I’ve also been potty training (not a necessity).
I put a post on social media to see what may be useful. Everyone’s suggestions were helpful, recommending:
I saw a quote from Rosalind Dorlen, which said ‘handling chronic illness is about learning to live in balance’.
I remind myself of this. I thought I’d do lots before this milestone. The toughest part is beating yourself up about expectations. Learning to live in balance. Good days, you act like super woman, and on bad days, you feel like a rubbish mummy for not having any energy to do anything and switching CBeebies on again (a god send!)
Frustration kicks in. My flare up has caused me to fall a few times, my mobility rubbish, writing poor, fighting fatigue and generally feeling like what’s in the potty! As a mummy, I still have the same challenges but as a mummy with MS it is harder. Putting my needs ahead of little man’s and Daddy isn’t easy but a necessity. Getting the right support from family, friends, support groups and social media contacts all help. But I find it hard to ask or accept help. I know I need to do better!
I’m hoping nursery will be the right development milestone for little man, and also for me. Or at least my muse for writing.
I’d love to hear how you tackle development milestones (no chronic illness required).
In October last year, we launched MS-UK Counselling, a brand new service for people living with multiple sclerosis (MS). We were delighted to welcome Nileema to the team as our Counselling Coordinator, and in December Jonathan and Wendy joined the team. We are all BACP registered or accredited, have many years of counselling experience and are trained in working with people with MS. So we think it’s time you get to know the latest additions to our team!
Hi, I’m Nileema. My interest in counselling started when I first had counselling myself over twenty years ago. I saw the massive difference that counselling made to my life and felt inspired to train as a counsellor many years later. I have found that no matter what the problem, there is a space for it in counselling. I have worked with individual and couple clients. I also provide training and clinical supervision to counsellors. I was really excited to join MS-UK in September 2017 to lead this exciting new service. My role is to run the service, carry out assessments with clients, ensure that we are legally compliant and work to high ethical standards, as well as provide counselling.
Hi, my name is Jonathan. I decided to train as a counsellor after appreciating the importance subjectivity plays in our lives, and the uniqueness this holds when attempting to understand our circumstances. I am an integrative counsellor and have particular interest in the role that attachments play in our lives. One of the principles I strive to offer is autonomy, which is the respect for the client’s right to be self-governing. My intention is to offer choice to the best of my abilities, and aim to reflect this through a discussion of your expectations during our work together.
Hi, my name is Wendy. I used to work as a learning support teacher and I became aware at the time of how children and their families needed additional support through counselling. I am a qualified person-centred counsellor here at MS-UK. I am really keen to support clients by helping them understand themselves in light of their MS. I have experienced the value that counselling can offer each individual through my own personal circumstances. As a team, we are proud to be offering the only counselling service of its kind across the UK. We believe that by listening to people affected by MS, we can shape a great service and offer something that people need and want.
Hello, We are updating our Choices leaflets about diet, Primary Progressive MS (PPMS), speech and swallowing, visual symptoms and Low Dose Naltrexone (LDN). But we need your help! If you have a diagnosis of multiple sclerosis (MS) please take our survey and share your experiences to help us shape the leaflets. We hope that by including your experiences, our leaflets will truly resonate with people who turn to us for help. Please be assured that any comments you give us will remain anonymous when published in our Choices leaflets.
Thank you for your help! Best wishes,
The MS-UK Helpline team
In her latest guest blog Joanne writes about Christmas and multiple sclerosis (MS)...
Sorry it’s taken me so long to write. I’ve been battling bugs and the MonSter has come out with vengeance.
With Christmas only around the corner, I put my best foot forward (left if you’re asking!), grab my stick (I’ve realised it doesn’t work well in winter) put some lippy on and carry on Christmas starts in full swing. I may look like I’m in the Christmas spirit, but on the inside, my MS is bubbling away.
I’m secretly wanting peace and quiet.
I probably sound all bah hum bug as on the one hand, it is the most wonderful time of the year but it also feels like an assault course. Twinkly lights, the smell of evergreen, secret eating of cheap chocolate coins, knowing the big FC is coming soon and everyone running around like headless chickens.
Little man is still too young to fully understand but he does love Christmas like his mummy.
Christmas and MS don’t mix. MS is holding me back. I’ve had to scale back. What am I doing to make Christmas run as smoothly as possible:
Keep calm and carry on
Don’t stress out. With pressure to have this perfect Christmas, whatever perfect is, I try to ease the pressure by focusing on what’s important and remembering I live with MS, that’s pressure enough. Remember it’s only one day. Don’t over commit yourself. Do what’s right for you.
Tiring for all, but exhausting for you. There’s more travelling whether it’s seeing folks or going out and about. Food and drink topped with long days have their toll. Don’t ignore any vegging opportunities but plan rest. Like Christmas presents, MSers need our batteries charged too!
Blooming heck it is cold! It’s snowed recently, dark days and the heating is on full whack, so I’m feeling more tired, the cold is making my MS worse, getting out of a warm shower is my cryptonite and if someone sneezes, I’ll probably get the germs. Many things to contend with, so the girl guide in me is being even more prepared. I’ve bought supplements, wear lots of layers and my wheat toy monkey is on standby for placing on my MS mad hands or warming me up. Plus little man thinks it’s funny seeing him spin round in the microwave.
I can’t write, so no card writing. Annoying but probably a blessing. I try to focus on what’s important, rather than what I can’t do. Charities get my card money instead of the card manufacturers. I insist on hubby having time to help, whether it is present wrapping or shopping. Instead of list writing, I use the internet to save all my gift ideas and finally shop. It also helps with requests for buying for little man.
Christmas is about many things, for me, it’s also about random acts of kindness.
When little man saw the big man, the kind staff made it easier for me. Obviously you’d like it to be magical (and value for money) but I was also thinking about me. Not judging my mobility, was the cherry on the cake.
Recently I emailed ahead to get a table at a local bar. The bar reserved the table, so I could sit and enjoy drinks with ease. My friends have cooked meals and brought as a surprise. Many acts of random kindness. Before I wanted handbags or shoes, now I dream of kindness ( I still have the bag and shoes, although make them lovely flat ones!) So as the saying goes, I hope this isn’t just for Christmas.
So whatever your Christmas brings, let’s hope it’s happy, merry and kind. Remember kindness costs nothing (not like a drone at £500!)
Health and happiness to all.
On Monday 13 November Nileema (our Counselling Coordinator) and myself went along to the MS Trust conference in Hinckley, Leicester!
The MS Trust is a UK charity that produce multiple sclerosis (MS) information and support MS specialist health professionals. This year they celebrated their 21st annual conference, welcoming some 300 guests to learn, share expertise and focus on improving care for people living with MS.
We went along to seminars about sharing best practice and understanding MS and mental health. At the plenary session we learnt more about high risk MS drugs and keeping safe, as well as understanding and supporting risk perception to people with MS. All of the speakers were excellent, and it was a fantastic day.
Nileema and I also spoke to people about our new service – MS-UK Counselling. This is a brand new telephone counselling service for people living with MS in the UK. You can find out more and register on our website at www.ms-uk.org/counselling.
Thank you to the MS Trust for making us feel so welcome, and thank you to all of the MS professionals who stopped by our stand and chatted with us.
Looking forward to next year’s conference!