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!
We’re feeling summery at the MS-UK offices as we prepare for our 6th annual Summer Ball on Friday 29 June...that's right, it's tomorrow!
Taking place in Constable Country at the beautiful setting of Le Talbooth, Dedham, over 100 guests are joining the celebrations in our 25th silver anniversary year.
Following pre-dinner drinks on the stunning lawns adjacent to the River Stour, guests will enjoy a three course dinner whilst being serenaded by The Harmonettes, a 1940’s style harmony duo.
A highlight of the evening is the grand auction, hosted by Will Quince MP, when diners have an opportunity to bid against one another for a variety of exceptional treats including; concert tickets, sporting, fine dining, musical and theatre experiences. Prior to dancing the night away, we also have a fantastic raffle. This is only possible thanks to the kindness and generosity of many donors and supporters.
MS-UK are dedicated to empowering people affected by multiple sclerosis to live life to the full, so every penny raised at our Summer Ball will allow us to continue our vital work. We are truly grateful to all of our supporters and hope that those attending have a fantastic evening.
It’s almost time to ‘get the glad rags on’ and in true ‘Strictly style’ …………’Keeeeeeeeeeep dancing!’
This blog has been written by Sue (pictured), who is volunteering with MS-UK this week...and as you can see, Sue has enjoyed the Summer Ball before!
Every year we run our annual 'Getting to know you' survey, asking you to tell us a bit about yourself.
We do this so that we can make sure we are always providing services that really meet your needs, and so that we ensure we are reaching as many different people as possible that want multiple sclerosis information (MS) or support.
In the survey we'll be asking questions all about you - from how old you are to what MS-UK services you may have used in the past. Everything is completely anonymous, and we won't be asking you for any contact details at all.
You can take the survey online up until 5pm today - thank you for your help!
Like many others, I lost a special someone to this cruel disease on 13 February 2002 - my Mum!
As a promise to myself, I have vowed that for each landmark birthday I have - my mothers name, Deborah Bendell, will be honoured - as without her, I wouldn’t be celebrating at all. So, for my 25th birthday I am hosting a Dinner & Dance in aid of this amazing charity, MS-UK.
Multiple sclerosis is a cruel disease and those who suffer with it can often deteriorate extremely quickly and unfortunately this was the case for my Mum. Despite the pain and suffering my Mum went through, she’ll always be remembered for being the happiest and cheekiest person in any room. I aspire every day to make her proud and resemble her in some way - so for me, this fundraiser is just the start of a long journey.
I may not have had much time with my Mum, as I was only 8 when she passed; however I know the support we received after her passing was second to none and this charity, MS-UK, is able to offer similar to others in need too.
So the long and short of it, if you aren’t able to celebrate with us on 27 April at the Dinner & Dance (see below the flyer for contact details) but would like to contribute to this special charity, any spare change to reach my goal is unbelievably appreciated!
In memory of Deborah Bendell, my Mum, and other loved ones suffering!
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...
I am pleased to say New Pathways issue 108 is now landing on doormats across the country! As always we have a packed issue, full of all the latest multiple sclerosis (MS) news and research, including drug updates and the latest cannabis study findings.
As the sunshine begins to make an appearance, we get topical with lots on vitamin D. MSer Ian Cook puts vitamin D tablets and sprays to the test (see page 30) and Kahn Johnson reveals what happened when his vitamin D levels became toxic on page 16.
Also in this issue, MS Nurse Miranda Olding discusses sexual dsyfunction and what can be done to help (page 14) and we have the big interview with the star of Channel 4 programme 'The Search for a Miracle Cure' Mark Lewis (page 24).
I hope you enjoy reading this issue, and please do email me your comments and letters to email@example.com.
Editor, New Pathways
P.S. Don't forget New Pathways is available to read on the go. Download the My MS-UK app from the App store on your phone or tablet device today!
MS-UK’s Wellness Centre, Josephs Court works closely with the University of Essex to support occupational therapy students (OTS) by providing role-emerging placements while they train.
Each year the Josephs Court team is invited to speak at a symposium with the new OT recruits about role-emerging placements at its Wellness Centre in Colchester, Essex and increase their knowledge of multiple sclerosis (MS).
Diana Crowe, Head of Services, said: ‘We took the opportunity to promote all of our services, but focused on what we deliver at Josephs Court, such as the exercise equipment and the benefits this brings to clients.’
‘There was good interaction and we were asked about the social activities we provide, so we discussed the MS-UK Social Group in Colchester, which has regular coffee mornings and other events such as bingo!’
‘Due to recent headline news regarding HSTC there was an interest in how this treatment could impact on us as a charity and our clients. Just like everyone else we will have to wait and see how the treatment develops, but we will continue to support people with MS for as long as they need us.’
‘We split into groups, which gave us a chance to speak in more detail with some of the students,’ explains Dean Jeffreys, Centre Manager. ‘The students were interested to know about APS Therapy, how we link up with other services and how politics impacts on our strategy.’
Speakers from St Helena’s Hospice spoke about its gardening project for those at the end of life and Craig, from Pots the Soldier, spoke about his post-traumatic stress diagnosis after leaving the army and how he found a love of pottery thanks to the support of OTs – very inspirational!
‘It was great to see the students so interested in the work MS-UK does and we hope to continue to work with Essex University over the coming years. Who knows one day we may have our own MS-UK Occupational Therapist,’ adds Diana.
Most people with MS recognise the expertise of their doctors and nurses, but somehow feel that there doesn’t seem to be enough time to cover all the things that matter to them and sometimes important things get missed. A group of people with MS and healthcare professionals are working together to improve clinic visits.
The group is called MS in the 21st Century. Many countries are represented and we learn from each other. We meet up a few times a year. We work to improve MS health care by understanding each other’s priorities and modelling partnership between people with MS and health professionals.
We have recently published a paper in a scientific journal which includes authors who have MS and also authors who are health professionals. This is a ground breaking project. The authors have discussed the priorities they have in an MS clinic visit and agreed a list of unmet needs from the viewpoints of both people with MS and health professionals. We have developed the paper jointly. As well as highlighting our different perspectives, we have also made practical recommendations. Our aim is to bridge the gaps between what people with MS and health professionals expect and provide.
We hope that the publication of this paper will be a key step towards ensuring that MS care addresses the expectations, priorities and needs of people with MS. It is vital that we work together to support people with MS to be fully engaged in managing their own condition. The paper emphasises the perspective of people with MS and how essential their involvement is in high-quality MS care.
From my own work as a neuropsychologist, I am particularly concerned to increase understanding of the psychological impact of MS, including cognition, mental health and wellbeing. We need to increase awareness of how these impacts can be recognised and successfully addressed.
Birgit Bauer, another author and a person with MS says, ‘As a person with MS, I cannot overstate the significance of this publication. I am hopeful patients everywhere and their healthcare teams will recognise the need for better communication and partnership with the ultimate goal of more effective and personalised care.’
"Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group" is published in the peer reviewed journal, Multiple Sclerosis and Related Disorders (MSARD), and is freely available online now. DOI: 10.1016/j.msard.2017.11.013
If you are a person with MS, or are close to someone who has MS, and you are interested to help Professor Dawn Langdon’s team in their work on psychological aspects of MS, please email firstname.lastname@example.org.
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?