This week, the MS Society has called for the legalisation of cannabis for multiple sclerosis (MS) patients. In their report ‘Cannabis and MS. The role of cannabis in treating MS symptoms’, the MS Society explores the benefits of cannabinoids to those affected by pain and spasticity.
Last year, the MS Society revisited their stance on cannabis for medicinal use to better reflect the evidence, opinions and experiences of people with MS.
They conducted a survey of 3,994 people with MS to explore their attitudes and experiences of cannabis. They found that 22% of people surveyed had tried cannabis for medicinal purposes and 7% were still using it. 26% of people who had stopped taking cannabis, did so largely because of concerns over potential prosecution.
The MS Society now calls for all licensed treatments derived from cannabis to be made available to those who need them. They ask that Sativex, which is a medically licensed, cannabis derived treatment for spasticity, be available on the NHS.
They also recommend that people using cannabis to treat their MS symptoms, as a last resort, should not face prosecution, and that possession should not be a criminal offence.
The report states that the MS Society do not recommend that people smoke cannabis, and also caution that some people, particularly those with previous mental health problems, may have an adverse reaction to medicinal cannabis.
Amy Woolf, CEO of MS-UK, says in response to the news, ‘MS-UK welcomes the MS Society’s new stance and their approach of listening to the voices of people affected by MS. We will be interested to follow the progress made by the MS Society in the future on this very important subject.’
Trishna Bharadia, who you may recall set the stage alight in the first ever ‘People’s Strictly for Comic Relief’ on BBC1 in a four-part Strictly Come Dancing spin-off, has been shortlisted for the We Are The City Rising Star Awards 2017 for the charity category!
Trishna was diagnosed with multiple sclerosis in 2008, and since then has become an award-winning advocate. Trishna, who has appeared in our New Pathways magazine, regularly shares her experiences through charity work, showing people that living a positive life with MS is possible.
Visit the We Are The City website to find out more about the awards and vote for Trishna if you would like to! Voting closes on 09 June!
Everyone at MS-UK wishes Trishna lots of luck!
Laura May, Marketing Manager
Today we publish another of our ‘Guest Blog’ articles from Liz about how she plans to attend a course all about multiple sclerosis.
If you would like to write an article for our blog please contact firstname.lastname@example.org.
It is largely with thanks to my youngest sister, Anna, that I type yet another hopeful blog for possible publication in the MS-UK blog.
So what’s going forward for me right now..?
Firstly, me, me, me. The exercises Rachel Love ‘designed’ for me during my recent spell in Berrywood Hospital…no doubt MS related, but surprisingly, not that I was ever directly informed…made some lifelong friends during my brief-ish stay…friendships always good in my book!
Secondly, continue Professor Georgev Jelinek’s 7 Steps to Overcoming MS…nb., not curing, but Overcoming…Multiple sclerosis, can wait until after (I’ve made a good start, reaching page 29 of its 451 pages). The book is almost certainly available, cost-free to me and others within the UK, from http://overcomingms.org.
I trust you’ll find it as engaging as I am!
By happy co-incidence…If you’re as happy, and able as I am to use all tools available to address our ‘condition’, my copy of Open Door, the quarterly newsletter of Multiple Sclerosis Trust has literally just been delivered.., you cannot only enjoy reading it, and also communicate with the body via email@example.com or freephone 08003323839.
Hey, just done it again Allanah, following our brief joint meeting with Mary Lowthian, just a couple of weeks back, I’m thrilled to report, for all MSers within striking distance: you know you’re out there, please join us: you know we’re stronger together…
Anyway, attentive and alert Allanah, and her team, together with agents from yet another burgeoning branch of the national MS Society, relatively locally based, are thrilled to give us plenty of notice of the forthcoming discursive/sharing forum: ‘Getting to Grips with MS’.
This unmissable exchange will take place on 08 October in Kettering.
You can check out the suitability / excellence of the venue itself, before making your decision to spend a couple of precious weekend hours meeting others that:
• understand each others ‘uniqueness’;
• are looking forward to enjoying learning a lot of genuinely useful stuff;
• possibly making a whole lot of new friends;
….refer to the blog’s title for my own response….er: YES!.
The thing is, our condition, yes MS, is not anybody’s fault…just as we are: all unique in our own ways: left-handed, right-handed, grammar-school educated, or school-leaver at 15/ as soon as possible…we might try to explain, worse, actually assign ( less favourable aspects of our current circumstances ) on MS…
My truth is that yesterday, one very old, OK, grown up, now 48 year old, primary school friend, her husband, and the oldest of her three daughters, collected me to take me to celebrate the life of the Wing Attack in our school netball team! Liz had lead a very active and 95% happy life, which we were all thrilled to celebrate with her…
I spent a rewarding and entertaining weekend celebrating SalAd [Sally and Adam]’s…geddit? joint 50th birthday celebration/occasion somewhere in the dune/woodland area in Wales, not too far from Swansea…see, if you put your mind to it, if you really want to, there’s maybe a chance you might be able to…give it a go…using sticks now, doubt I’ll congratulate Mum, Judith Tee, as was, for tennis playing endeavours, but can and WILL do what I am able for others with MS…doesn’t define me, does it define you?…
I hope I saw you in Kettering, Getting to grips with MS on 08 October.
In this guest blog, Christian recounts visiting MS Life, the largest event for MSers, organised by the MS Society…
So MS life???? Firstly not my first time at the excel but I’m still in awe of the building, it’s enormous. As a venue I thought it was good and easy for me to get to
I was excited but not sure why, I had heard bits of previous events in Manchester but didn’t really know what to expect and the scale of it all.
The vast array of stalls showcasing the latest mobility aids, activities, talks and MS charities were amazing. I took part in a wheelchair dancing class which erm is not me, I had no rhythm before MS and following progression it didn’t trade me with any silky moves. This is a brilliant way to get you exercising in a fun way, I may of looked silly but who cares?
The talks I sat in on were about research and future treatments particularly for progressive MS, very exciting stuff.
More importantly than all the information though was the overwhelming feeling of community, people I’d never met, people I knew only from Facebook/Twitter and all the support staff. It was brilliant to spend time and talk to people who just get it. I will be back (that’s not a menacing Arnie I will be back either). Until next time,
So, the latest issue of New Pathways has now landed, and it is an exciting one!
We have stories from Rio Paralympic Gold medallists Stephanie Millward and Kadeena Cox, a bumper section of news and research from ECTRIMS, plus articles all about pain management, an interview with Billy Talent drummer Aaron and sailing challenges in Turkey!
Our digital edition is also packed with videos and interactive content too – for a sneak peak, check out this video of Sardines Dance Collective performing at MS Life!
You can read the magazine instantly on your phone or tablet just by downloading the My MS-UK app, or subscribe for the paper or audio version via the MS-UK website.
However you read New Pathways, do send us your feedback and suggestions, and don’t forget to send your letters in too!
A client who regularly contacts the MS-UK Helpline has recently completed the process for registering with the MS Society Tissue Bank to donate her brain and spinal cord for research purposes after her death. The Tissue Bank is based at Imperial College London and is a collection of brain tissue donated by people with (and without) MS and other neurological conditions. The Brain Bank stores tissue left by donors and makes samples available to scientists carrying out research on MS. The Tissue Bank is funded by the MS Society and Parkinson’s UK.
Whilst lending an understanding listening ear over the Helpline the client made it clear that she really wanted to share her experiences and let other people affected by MS know about her massive personal achievement…
My name is Dinah and I have primary progressive multiple sclerosis, I wanted to share my experiences and thoughts about the MS Society Tissue Bank.
I understand that donating brain tissue is not what some people with MS may want to do, however if somebody does want to do this, my own experience has shown me that it is not as hard to do as you might imagine. There is a lot of help out there along the way for you to be able to do it.
When I attempted to first register with the Tissue Bank a few years ago, I gave up on it due to my personal circumstances at the time, it is a big decision after all. It has been on my mind to come back to it and get this done. I have been trying to find the time and energy needed for quite some time.
This year I got help from the team at the Tissue Bank at Imperial College London with the paperwork. They were very supportive through the whole process. It was not easy for me but it was simpler than I thought it was going to be.
I honestly feel that the day I heard I was registered to be a donor for research purposes and would be helping others with MS after my death was one of the happiest days of my life.
I feel less scared of dying now that I know that I will be helping people through research when I am dead. I am chuffed to bits.
Wishing you all happiness.
To find out more about the Tissue Bank at Imperial College London you can visit their webpages where you will find all the information you need including a ‘frequently asked questions’ section at www.imperial.ac.uk/brain-bank. Or you can call +44 (0) 20 7594 9734 or email firstname.lastname@example.org and the staff will be happy to help.
So, September has arrived, and we are excited to be going along to MS Life 2016 at ExCel London this month!
You can now find out the highlights of what will be happening at the event on the MS Society website. You can also download a full timetable of activities.
We will be there for both days at stand 246, so do please come and say hello!
See you there!
The MS-UK Helpline team
Would you like the opportunity to meet the MS-UK Helpline team face to face?
Have you ever wanted to find out about all the latest MS research direct from those involved? Would you like to meet the scientists and professors behind the drug therapies?
Do you have questions about any aids and adaptations, accessible holidays and travel? Would you quite like the opportunity to meet others with MS and their families?
MS Life 2016 may well be just what you are looking for!
MS Life is a large exhibition held every other year and is organised by the MS Society. This year it is coming to London Excel and we are really looking forward to being there.
Tickets are free and you can choose to attend a variety of workshops as well as visit the main lecture hall for the keynote speakers. You might even wish to pay a little visit to the MS Life Spa or watch a cookery demo!
This year see’s the return of the demonstration area, where last time we go to see the wonderful Canine Partner dogs in action, showing off their skills, as well as some fantastic wheelchair dancing. We also saw demonstrations from some of the most amazing off road trikes and wheelchairs where you can even have a go yourself.
It’s a great event to find out about things you may not have even thought of, or realised existed. It’s also really nice to meet others and for family members to learn more too.
You can book your ticket now, and don’t forget to come and say hi to us, we will be right opposite the demonstration area, you won’t be able to miss us!
I look forward to meeting you,
On the evening of 17 July our very own Ryan from the MS-UK Helpline attended and supported an evening run by Julie Webster and Helen Willis, the MS nurses from Broomfield Hospital in Chelmsford and three of the local MS Society branches. In this blog, Ryan tells us all about it…
It was really good to be working together with the Local MS community, MS clinical services and the MS Society. We always enjoy these partnership events and hope that there will be many more to come.
The event was aimed at people who had attended a ‘Getting to Grips’ course in the last few years. The Getting to Grips course is a valuable introduction to all things multiple sclerosis for people who are newly diagnosed. The content of the original course usually includes connecting people to the local MS community and MS clinical services, and gives talks and information on symptom management, diet, lifestyle, welfare rights and employment issues. Many of the local MS Society branches run courses either the same (or very similar in nature) which are tailored to a specific area. If you are newly diagnosed with MS and want to know if there is a ‘Getting to Grips’ course running near you, contact your local MS Society branch.
The session I attended was an informal follow up bringing prior participants together to gain further information and support. There were approximately 50 people in attendance who were a mix of people with MS, family members, friends and allies. The evening had a strong emphasis on self-management, wellness, lifestyle and diet.
There was a presentation from a local man living with MS that gave a personal perspective about living well with secondary progressive MS, he talked openly and honestly about his journey so far, sharing the things that he has tried over time and the strategies he uses now to self-mange his symptoms.
I then spoke about ‘Exercise and Wellness’, giving information on the proven benefits of exercise for people with MS, the types of exercise and activity that people can do, tips on getting exercise right and how to access support locally. I also talked about ‘wellness’ and the importance of having a holistic approach, ensuring that consideration has been given to physical, mental, social and emotional wellbeing.
To highlight the importance of this holistic approach, which thankfully many clinicians and MS professionals are now taking on board, I spoke about the ‘MS Brain Health’ Initiative. The MS Brain Health initiative is an international partnership of clinicians and organisations calling for change in the management of MS. The initiative has emerged from a new evidence-based international report that recommends strategies to increase lifelong ‘brain health’. The strategy gives tips for ‘six ways to a brain-healthy lifestyle’ which very much reflects the holistic approach to gain a better quality of life in the longer term. I also talked about MS-UK’s wellness studio Josephs Court and the range of support on offer to support people with a neurological condition in Essex.
The group then had talks that gave further personal perspectives of living with the effects of MS. We heard from a family member, who spoke from the heart and gave an open and frank insight into the shared journey that families undertake after a diagnosis of MS, as well as an incredibly inspirational story about one man’s mission towards fitness post diagnosis, which included cycling from Essex to the south of France! It was great to hear from people living life to the full.
Overall the evening was incredibly interesting with the great outcome of connecting members of the MS community, giving insights into living with MS and ensuring people had up to date and trusted information.
We recently ran the 555 Neurology Project with Healthwatch Essex and the Essex Neurology Network. The people who attended our focus groups described their diagnosis conversation to us, with a range of themes emerging.
Some had been guided through the diagnosis conversation expertly by neurology professionals, and some felt steps had been missed out and the journey could be improved.
I wanted to share this quick snapshot of the 5 themes:
While there are five key themes, participants felt strongly that these are not mutually exclusive, and that each needs to be acknowledged at the same time – during that diagnosis conversation.
If you would like any support with diagnosis, or just have some questions, do contact the MS-UK Helpline via our live web chat service or by calling 0800 783 0518. You can also order a copy of our newly diagnosed booklet by visiting www.ms-uk.org/newdxpack.
Thank you again to everyone who took part in the 555 Neurology Project, we couldn’t have done it without you!
Marketing Manager, MS-UK