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.
We just wanted to let you know about this important source of information that our MS-UK Helpline team regularly uses to support the multiple sclerosis (MS) community.
The Disability Rights Handbook is a guide to benefits and services for anyone with a disability, their families, carers and advisers. It contains a wealth of information relating to the benefits system, as well as social care services and help for carers. This guide will be relevant to many people living with MS.
Clients who use the MS-UK Helpline have let us know how valuable the information provided by our advisors is and, since a lot of that information can be found in the Disability Rights Handbook, we wanted to share it with you. If you would like to buy your own copy, you can do so on the Disability Rights UK website store.
We wanted to let you know this was available to pre-order as last year’s handbook sold out in quite quickly!
As always, though, our MS advisors are available to listen to you, talk things through with you and keep giving you as much helpful information and support as possible.
This year MS-UK is commemorating 25 years of supporting people affected by multiple sclerosis, and I have a fun, easy way for you to show your support and get involved!
Just add our Twibbon to your Facebook or Twitter profile picture and help us celebrate our 25th anniversary!
There are lots of other ways to support us as well, just visit our website to find out more.
Jill Purcell, Fundraising Manager
Every year we run our annual survey, asking you to tell us a bit about yourself. Last year hundreds of you took part – thank you!
We run this survey every year so that we can make sure we are always providing services that really meet the needs of people affected by multiple sclerosis, and so that we ensure we are reaching as many different people as possible that want information 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.
Thank you so much for taking part!
Laura May, Marketing Manager
Fiona Sakal, who has been a Trustee of MS-UK for over decade, recently joined us in the office for a week to see what we do to support people affected by multiple sclerosis (MS) on a daily basis. We couldn't resist asking for an interview, and we started off with a 'two truths and a lie' question...
Two truths and a lie…
I was born and raised in Germany
I qualified for the Olympic Equestrian team
I was Cabin Crew, based at London Heathrow
Read on to find out all about Fiona…
I joined the board of MS-UK in 2007, when we were still MSRC and working from Peartree Industrial Estate with three car parking spaces, one toilet and not enough windows. My brother-in-law had MS for 24 years and although I was not fortunate enough to meet him, the impact his condition had on the rest of the family remains, so I was delighted to be asked to join the Board of Trustees.
Obviously, I was full of enthusiasm and committed to running the Virgin Money London Marathon the following spring! I definitely did not take into account the enormity of the training schedule that had to fit in alongside my final law exams, a full house renovation and a wedding. Ten years later and
I am almost ready to commit again, but not quite!
When Peter and I married in 2008 we decided that we would like to raise money for the charity rather than receive gifts. We were overwhelmed by the generosity of family, friends and clients and with the help of Roger Dakin and a game of heads and tails at our wedding reception, we raised £12,000.
Fast forward 11 years and two little girls, I am still as passionate about MS-UK as ever and love to get involved wherever possible. Under the leadership of Amy, the charity has grown to such an extent that I was beginning to need a flow chart to understand how everything fit together and wasn’t confidant that I was able to contribute effectively as a trustee. So here I am!
I have really enjoyed my ‘work experience’ and have found it invaluable to get to know everybody and experience first-hand what each role entails, both in the office and at Josephs Court. The atmosphere is very warm and welcoming and it is clear that everyone has a real passion for what they do. I am incredibly proud to represent MS-UK and excited to see what we can achieve in the future.
So, what was the lie?
I qualified for the Olympic Equestrian team!
Over the next couple of weeks, people across the country will hear from Prudential RideLondon-Surrey 100 about whether or not they got a ballot place. I can just imagine the thousands of lucky people who will get a 'yes' and start planning their big day out in the capital.
But as over 80,000 people applied for a ballot place, there will also be some disappointment…but do not worry! You can still be part of the action as a member of the MS-UK team!
The Prudential RideLondon-Surrey 100 starts in Queen Elizabeth Olympic Park then follows closed roads through the city and Surrey before finishing on The Mall. On Sunday 29 July we’ll be heading to London to cheer on #TeamPurple, and that could include you!
Not only will you take on 100 miles, but you’ll be helping us support even more people affected by multiple sclerosis (MS). When someone calls the MS-UK Helpline to ask a question about managing bladder and bowel problems, your efforts mean we can pick up the phone. When someone reads an article about a complementary therapy in New Pathways that could help with fatigue, you could be the reason the magazine lands on their doormat.
Now, it must be time for the song…
Jenny Poulter, Events Fundraiser
In this guest blog, we celebrate our first Fundraiser of the Month of 2018! Find out more about how Chris Leslie took on a new year's dip in aid of MS-UK...bbbbrrr!
‘Happy New Year’ was still circulating around the web, mobile phones were recovering from meltdown. Some people were recovering from the night before.
No such luxury for me, I had been offered the opportunity to have a new year’s day ‘dip’. It was the good people at Bognor Regis swimming club who offered me space.
I thought this was bit special, so I accepted on the basis that I could raise funds for a charity of my choice, so having done many daft things in the past for Justablefriends and other charities, I decided that this was to be a charity that was really close to me, I chose MS-UK.
A simple choice really for me as I’ve seen what multiple sclerosis (MS) does to people, and the effect it has on people and families. I can’t claim that I can help to find a cure for MS that will help those close to me, but I can raise a few pounds to help towards the support work that MS-UK get involved with.
So, I set up the link to donate to my Page for the charity. I then got on social media, and it turns out that there were a lot of people either affected by MS, or, who knew someone that was. Alternatively a lot of nasty people that just wanted to see me get cold!
When I realised that this was the case, (that there were a lot of people affected by MS) I contacted MS-UK to let them know what I was doing. They provided the shirt for me that I just about managed to squeeze into (too much turkey I think over Christmas).
At the time of publishing this, running total for funds raised is £195 plus gift aid, with some more pledges to come. So my big thank you goes to all those that sponsored me, thanks to the swimming club for making it happen (unofficially) and also to MS-UK for the chance to tell people about the work they do.
And just before it gets too late, ‘happy new year to you all’ and if you talk about doing something like this, follow it through, because the feeling is great (the cold isn’t).