We are really pleased with how the ‘Newly diagnosed with multiple sclerosis’ booklet has been received. Producing the booklet was a fantastic collaborative experience with the teams here at MS-UK working in close partnership with people with MS to write and develop the booklet and make sure the tone and content was just right.
‘Congratulations on the Newly Diagnosed Booklet, I am sure it will be a big success and really helpful to those at the beginning of their new life with the challenge of multiple sclerosis.’ – VIP
We worked with over 150 people with MS to gain the experiences to help shape the content and then went to our Virtual Insight Panel (a group of people with MS, carers and MS professionals) to gain their thoughts on the content before finally publishing the booklet.
‘This looks really good – just what is needed!’ – VIP
The pack has been sent out to all the MS Therapy centres and to many of the specialist MS clinics across the UK. It has been so well received that we have even had many nurses and clinicians reorder additional copies.
‘The information is easy to read, informative and well presented.’ – MS Clinical Nurse Specialist
As well as the physical copies that have been sent out to individuals, clinics and MS Therapy Centres the booklet has been downloaded from our website by approximately 200 people!
We look forward to hearing what you all think of the booklet and will ensure that this is updated regularly and always includes the voices of real people with MS.
MS-UK Helpline Team
From 10am on Saturday 11 June the World Premiere of Dance and Creative Wellness streamed live to screens across the globe!
If you missed the day of dance on Saturday, don’t worry, you can view the videos from the day and take part in the dancing anyway!
The films on the Dance and Creative Wellness live streaming website will be available for the next month, so do take a look and let us know in the comments below what you think about it.
Thank you to the Dance and Creative Wellness Foundation for letting us know about this event, we hope it was a real success!
On Wednesday 08 June, Healthwatch Essex hosted the launch event for the 555 Neurology Project report, in partnership with eight charities from across the county, including MS-UK!
Senior staff from Essex Clinical Commissioning Groups, local neurologists and health professionals came together at the Chelmsford City Racecourse to hear the lived experience of five people who have been diagnosed with a neurological condition in the past three years.
The event launched the findings of the recent research project, which was led by MS-UK and undertaken in partnership with member charities of the Essex Neurology Network.
A series of focus groups took place across the county to capture the lived experience of people who have been diagnosed with a neurological condition within the past three years. They were encouraged to talk about what being diagnosed was like and what would have improved their experience.
Neurological conditions include brain injury, epilepsy, Huntington’s Disease, Motor Neurone Disease, multiple sclerosis, Parkinson’s, Progressive Supranuclear Palsy and stroke, and affect over 35,000 people in Essex.
Patients from the focus groups shared their experiences face-to-face with the neurological professionals who deliver care in Essex. By listening to today’s service users, these professionals have taken the first step to help improve that diagnosis experience for future generations.
Thank you to every single person who took part in this project, we have enjoyed conducting the research and sharing the real voices of people in Essex.
I do hope you enjoy the report!
Marketing Manager, MS-UK
At our centre in Essex, Josephs Court, our clients have been busy getting organised, and have created a Social Group! If you live in Essex you can come along and join the fun!
Following on from the success of our first coffee morning, we were thrilled to have even more of you lovely people join us for our second gathering- around 30 of you in total!
We have now decided to hold our coffee mornings on the second Tuesday of every month and will continue to use Kings Cafe in Stanway as the venue- due to their kind accommodation of our expanding group.
Please do join us, and feel free to invite any fellow MSers that you think might be in need of a good laugh over a cuppa and cake!
We are pleased to confirm that we will be holding a Family Barbecue at the Officer’s Club in Colchester on Sunday 14 August!
It will be a great opportunity for us all to get together with family and friends, so we really hope you can join us.
Tickets will be on sale soon so watch the notice board for full details at Josephs Court.
As always, we’d love to hear any ideas you may have for social activities, so please put your suggestions in the box at Josephs Court.
Your social group
In honour of Volunteers’ Week we asked one of our Virgin Money London Marathon volunteers why it is that they come back to help MS-UK year after year. Paul Davies has been volunteering for MS-UK since 2012, so why does he keep coming back?
‘Volunteering for MS-UK has proved to be so rewarding,’ says Paul. ‘I’ve met so many inspiring and dedicated people, especially during the London Marathon week where each runner is an example of sheer determination, whether they are someone experiencing MS, or a relative or friend running on their behalf.’
If you want to volunteer for MS-UK, have an opportunity to meet our fundraisers, and be part of the some of the UKs biggest sporting events, get in touch with Mark@ms-uk.org or check out the opportunities on our website.
From 01 to 12 June it’s Volunteers’ Week, an annual event to celebrate the contribution of millions of volunteers across the UK. At MS-UK, we simply couldn’t continue our vital work without the dedicated support of our volunteers. In this blog, we’re shining a light on Brendan’s story…
Brendan is a volunteer at Josephs Court, our Wellness Centre. What motivates him to give up his time to support those affected by multiple sclerosis?
With a military background, Brendan worked in the medical corps for many years before retraining with support from Help for Heroes. Brendan wanted to become a personal trainer, with a specific focus on people with disabilities, and spent 12 weeks last year volunteering at Josephs Court on a placement.
‘I originally came to Josephs Court because I was looking for a non-conventional gym as part of my placement,’ says Brendan. ‘I wanted to help people.’
Six months later, Brendan is still here. ‘Once I was qualified I decided to stay. I’d found the work rewarding and built up a good rapport with the client base.’
Brendan supports clients during their exercise routines, which are specially tailored to help build up strength and muscle tone and improve general fitness. Josephs Court also acts as a social hub, providing people living with MS and other neurological conditions with a place to socialise and relax, with trained staff always on hand to support clients to live life to the full.
‘Interacting with clients is the most satisfying part of my role,’ says Brendan. ‘Seeing improvements in their physical and emotional wellbeing is so rewarding.’
You may not associate multiple sclerosis with dancing, but coming up on 11 June is a reason to start doing so! From 10am the World Premiere of Dance and Creative Wellness will be live streaming to screens across the globe!
Dance isn’t your thing? Don’t switch off just yet. This project will be dancing for MS, to raise awareness of the condition and the ways in which dance can help it. Andrew Peter Greenwood originally started Dance for Health after a friend was diagnosed with Parkinson’s. He wanted to ‘change people’s lives’ by offering specific programs for people living with conditions such as MS and Parkinson’s.
He then collaborated with Clare Guss-West and the Dance and Creative Wellness Foundation was born! As well as its other ambitions, the foundation wants to develop Applied Dance in the Healthcare and Wellness Sector by offering workshop and dance experiences to as many people as possible. By demonstrating the effective role of dance in public health and quality of life, they want to bring about the use of dance as both a treatment, and a preventative measure.
So even if you have never before considered strapping on your dancing shoes, now might be the time. You can join people from all over the world and take part in this international, creative wellness dance class, and find out what dance could do for you!
To get involved simply follow the live stream on 11 June as it will be available online all day. If you’d like more information you can fill out the form or check out the Dance and Creative Wellness Foundation website.
This week marks 2016’s Carers Week. There are over 6.5 million unpaid carers in the UK, and roughly three quarters of all people with multiple sclerosis will rely on care and support from family and friends at some point. So we want to celebrate the important work of these people, many of whom don’t see themselves as carers, and recognise their important role.
What is Carers Week about?
Carers Week seeks to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK. This year Carers Week is all about building carer friendly communities.
What makes someone a carer?
Carers help with personal things like getting someone dressed, helping them move about or looking after their medication. They may also help with things like shopping, cooking, cleaning or managing money. This means that a carers role can be varied, and many in this position may view themselves as just being a good friend or family member. This is why it’s so important for them to get recognition for their help that is so invaluable to the people they care for!
Why are they so important?
Some people may only take on the role of carer for a couple of months, but with multiple sclerosis where symptoms can be unpredictable and progressive, their role can often be ongoing. This means friends and families can take on a hugely important part in caring for their loved ones, which means they can stay in a familiar and loving environment.
Are you a carer?
Lots of people don’t consider themselves to be a carer because they believe they do what anyone would for their family. However, if you offer support to a loved one or family member you may be a carer, and there is support available to you if you need it.
Sometimes, when you’re putting a magazine together, you stumble across something so new no one is talking about it yet.
Occasionally, you’re so lucky you stumble across four of them.
Which, I won’t deny, has made me a bit giddy with excitement.
But then, that’s what’s so great about New Pathways – we cover anything and everything.
Like T20K for example – a drug so new it’s not even been given a brand name yet.
No one is calling it a cure, but initial tests and studies are looking really promising, and there’s a fascinating back story to the discovery.
You see, a bunch of…
…no no, you’ll have to read it in the magazine.
Then there’s Sesame Enable, which can make a smartphone hands free for people who struggle to use their hands.
The idea came about when…
…oops, almost did it again. Nope, you’ll have to get a copy of the new issue.
And did I mention that I got to have a go on a range of Mountain Trikes?
Honestly, they are so much fun. I was…
…you’d think one of us would have learnt by now, wouldn’t you?
Yup, off you go to the new issue.
When you get there, you’ll of course find all the latest news, an announcement from Stephanie Millward and what I’m intolerant to.
That last one might shock you, because it’s not cats who sit on your keyboard when you’re writing a blog. And that was my first guess.
Anyhoo, do go read and enjoy the latest issue of New Pathways. With a cup of tea, maybe?
And a biccie?