Way back in 2016 MS-UK hosted a team from the School of Sport Rehabilitation and Exercise Sciences from the University of Essex here at our headquarters.
The team were running a trial testing the use of an Xbox game specifically designed to support people living with multiple sclerosis (MS). Since then, they have been working hard to continue exploring possibilities in this area, and yesterday I had the privilege of being invited to the MS Olympix at the University of Essex.
The day included taking part in three different games that could be played standing up or sitting down.
Sarah, who was first diagnosed with relapsing-remitting MS in 2007, attended the event...
‘After hearing about the day at a Josephs Court social coffee morning, it sounded really interesting. It is really good fun and some of the games – especially the ones that involve lifting my feet up – really helps my balance and coordination. It’s like playing the Wii at home but more fun!’
Sarah added, ‘the system comes from a background of rehabilitation, so I’d love to see it developed so people like me, living with MS, can use it at home’.
A big thank you to the team for inviting me to join in and we will keep everyone posted on future studies in exergaming!
Laura May, Communications Manager
Today we have launched a new video all about our plans for the next three years. At MS-UK, we want to be truly community-led and we have developed our next strategy with this in mind.
Way back in February 2018 the whole charity agreed that we wanted to involve people affected by multiple sclerosis (MS) in a meaningful way. We were really keen to make sure we didn't just tick boxes, we wanted people affected by MS to share their insights and experiences with us and help us develop a way forward that makes a difference where it's needed most.
We asked the MS community 'what is the biggest difference we could make for you today?' And you answered...through attending focus groups, joining our Virtual Insight Panel, completing surveys and sending emails, you let us know what matters to you.
So, what are our priorities for the next three years? Watch or listen to our film today to find out!
You can also read our Strategic Plan for more information.
I am very excited about planning for a healthier and happier future, a future where we can improve understanding of MS and provide the support that is needed most. Thank you so much for all of your feedback over the past year, you have made this possible,
The All Wales Medicines Strategy Group (AWMSG) are seeking the views of multiple sclerosis (MS) patients and carers about new medicines it will consider recommending for use in NHS Wales, such as fingolimod (Gilenya), to treat MS in paediatric patients.
They would like you to share with them what it is like to live with MS or to care for someone who has it, and by contributing you will provide invaluable information about patient and carer needs.
In addition, they will be asking clinical experts to give their views and the medical facts. All of this information combined will give a really good insight into the real effects MS has on patients and carers and help inform the drug approval process. You are not expected to have all the answers, but anything you can share will be incredibly helpful.
If you would like to share your experience download the questionnaire to complete and send it to the address below by the 18 March 2019:
All Wales Therapeutics & Toxicology Centre
University Hospital Llandough
Penlan Road, Llandough
Vale of Glamorgan
Alternatively you can fill out the questionnaire here. All information shared with AWMSG will be kept confidential.
AWMSG is meeting on 15 May 2019. At the meeting the group’s lay member will summarise all comments from patients and carers, and patient organisations. Only AWTTC and committee members will read the completed questionnaires.
If you would like more information, or help with completing the questionnaire, please call 02920 716900 or email AWTTC@wales.nhs.uk.
What you might not know is that Scott has been living with multiple sclerosis (MS) for 13 years and after recently seeing a worsening in his condition applied and has been accepted for Haematopoietic stem cell transplantation (HSCT) treatment in London.
Scott has had a coveted career as an aircraft engineer in the Royal Air Force and was diagnosed with MS in 2006. With an MRI scan his neurologist identified that he has significant lesions to confirm he has MS.
He tried the disease modifying therapies approach and gave beta interferons a try, but they didn’t agree with him. So he decided to take the no-drug route for 13 years before his MS became more active in recent years.
Like many people’s HSCT stories, Scott didn’t know anything about the treatment until his wife found information online. He has since been accepted for HSCT treatment in London and wants to raise awareness and share his experience exclusively with MS-UK and its followers. This is the first of a number of vlogs Scott will be sharing with us, so please do follow his journey with us.
Scott thought it was important to express that he is no way an expert and MS affects everyone differently, but hopes that sharing his story will give everyone an idea of what’s involved in the process and what to expect. Please do share your thoughts and comments with Scott via our social media pages and his own @goggle_beard.
Caution: Please be aware that some of the language used in this video may cause offence.
I am proud to let you know we have recently been accredited with the Workplace Wellbeing Charter, an award which recognises that we strive to make MS-UK a great place to work.
Completing the Workplace Wellbeing Charter is about more than just ticking boxes. It is making a real commitment to the health and wellbeing of our employees and the accreditation standard that is built on best practice, the latest research and business sense. As a national health charity, wellbeing is really important to us on so many levels and that includes the wellbeing of our staff and volunteers, so it means a lot to us to achieve this.
The Workplace Wellbeing Charter have made a short film about MS-UK, which you can now watch on our YouTube channel or below.
Thank you to all the MS-UK staff who make working here such a positive experience!
08 November 2018
Around the corner from the MS-UK offices in Essex, a bright-red boat is moored by the quayside. It's an impressive sight. The deck is busy with cranes and pulleys. Porthole windows gaze out across the water. The light tower that rises from the deck is seen by hundreds (possibly thousands) of commuters crossing the nearby bridge on their way to and from work.
So imagine our surprise when the Colchester Sea Cadets, who use the boat as their base once a week, said that they'd be willing to turn the tower light purple to show their support for MS-UK.
Last Wednesday evening, we made the short trip down the riverfront to see the purple light in full glow. It was astounding to behold! Set against the dark night sky, the light blazed, bathing the riverside in bright purple and causing a few passing heads to turn.
We spoke to a couple of cadets who had come to meet us, and they talked us through how they had planned the fantastic show of colour. While most of their explanation was far beyond our understanding of all things nautical, we were incredibly grateful to them for pulling off something so magical for MS-UK!
Thanks to Colchester Sea Cadets for welcoming us to their one-of-a-kind home and for helping us 'paint the town purple' in preparation for the Colchester Half Marathon 2019.
Dean, Wellness Centre Manager at Josephs Court in Essex, tells us all about his recent visit to the Rotary Club of Centurion Colchester...
On 17 October, I was delighted to deliver a presentation to the Rotary Club of Colchester Centurion, who do a fantastic amount of voluntary work and fundraising for charities and good causes in Essex.
We were very well received! The club members were keen to know more about MS-UK and what we do both locally and across the UK.
We were privileged to be joined by Judy Sexton, one of our long standing Josephs Court clients. Judy shared a moving personal story of her time at Josephs Court, the heartfelt account of her experiences living with multiple sclerosis (MS) and attending the centre really touching a chord with those in the room.
We were also joined by the Chairman of our Board of Trustees, Martin Hopkins, who outlined the charity's vision for supporting those with MS. Members of the Rotary Club of Colchester Centurion are now planning to visit Josephs Court to see the facilities for themselves and learn more about how access to our centre improves the lives of local people affected by MS.
To top off a successful morning, the club generously donated £2,000 to MS-UK in order for Josephs Court to purchase a brand new piece of equipment! We have been looking to offer resistance-based exercises at the centre for a long time. This form of training has been shown to benefit people with MS by increasing muscle mass, improving tone and ultimately making daily functions easier. In addition, the benefits can be seen on a physiological level, improving neural transmissions from the brain to the muscles and reducing the progression of brain atrophy (shrinking). With that in mind, we cannot wait for our shiny new weighted pulley machine to arrive!
We would like to say a huge thank you to Rotary Club of Colchester Centurion for their very kind donation. I will certainly be letting them know how our clients are getting on with the new machine when it arrives. Thank you!
Wellness Centre Manager at Josephs Court
I am thrilled to share a sneak peak into the latest issue of New Pathways magazine, which is out now!
Our cover star this issue is MSer and HR Specialist Rebecca Armstrong, who discusses being your own boss and taking a step into self-employment on page 16.
On page 24-25, wellness coach and Director of Work.Live.Thrive Zoe Flint discusses how relaxation can help boost your immune and central nervous systems. This feature all about mindfulness for MS shares Zoe's insights and her top 5 things to get your started.
Also, MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer. Ian says, 'It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person.' Read the full article on page 12, and don't forget to check out his 'revisited' article on page 42 all about Shopmobility.
Fats have once again been dominating the news of late, so we asked MSer and Nutritional Science Researcher Sharon Peck to reveal the truth and explain what we really need to know on page 19. We also take a look at the natural remedies lurking in the back of your kitchen cupboard that could help relieve MS symptoms on page 18.
If you would like to see something specific in New Pathways please email me and let me know your thoughts or feedback.
Editor, New Pathways
I am delighted to say that our Annual Review 2017 is now published. This booklet is our way to thank our supporters and celebrate our success in a public way, and I hope you enjoy reading it.
Our vision is a world where anyone affected by multiple sclerosis (MS) can access the information and support they need to make their own decisions. Since 1993 we have led the way in promoting choice, tackling taboos and remaining independently funded. We are built on a foundation of listening and acting according to the needs of people affected by MS. I am thrilled to see that this is reflected in our work from last year.
We are driven by our values, guiding principles that inform every aspect of our work. In 2017 we were able to bring these values to life, and our services supported thousands of people. Every service is shaped by people affected by MS. By listening to people, we are able to offer services that are truly community led.
Thank you to every single person who has shared their voice with MS-UK or supported us so on our journey so far.
Our work would not be possible without the support of so many people.
It's not every day that you see a patient bed out in the wild.
On Tuesday 16 October, I paid a visit to One Colchester Shop in Colchester, Essex to check out the local Healthwatch Patient Bed Roadshow. The striking visual event, which is travelling the length and breadth of Essex on a five day tour, invited people from the street to sit on a bed (no need for pyjamas!) and talk about what they thought about health and social care in the area.
The Healthwatch Essex team, who strive to represent the views of local people about health and care services in the county, hope that the stunt can help raise awareness of issues that individuals of every age face day to day. Plenty of people opened up about their experiences during my visit, and no two responses were quite the same. Some highlighted a lack of mental health support in healthcare, while others criticised GP waiting times and staff shortages. Plenty more heaped praise on the doctors and nurses of the NHS who cared for loved ones.
As well as the bed interview showpiece, a team took to the road with a handful of pens, colourful post-it notes, and an old-fashioned notice board to get passersby to jot down a quick sentence summarising their thoughts. This rainbow of thoughts were then stuck to the board and displayed at the exhibition.
You can still catch the event for yourself in Southend and Harlow. Check out the Healthwatch Essex events calendar to find out where and when.