The last few months have marked a period of change here at MS-UK for our trustees.
We are wishing our Chair of the Board of Trustees, Martin Hopkins a fond farewell as he retires from his post after 12 years of service to MS-UK. As Chair, Martin oversaw a huge amount of change at the charity, including our launch of Choices booklets, our live web chat service and change of name.
Martin says, ‘One of my best friends was diagnosed with multiple sclerosis (MS) and have seen him deal with the shock of that I felt fairly helpless in terms of the practical support I could offer. I thought therefore that becoming involved with MS-UK would be a way of providing support.’
We wish Martin all the best for the future and we know he won’t be a stranger.
Stepping up to the Chair’s role will be Trustee Matthew Swan. Matthew is a Commercial Manager in the banking sector, is a treasurer for another national charity and is the Deputy Chair for the Colchester Mercury Theatre.
Matthew says, ‘MS-UK is an organisation which does tremendous work to help all affected by MS and I am very fortunate to have the opportunity to work with the Board and staff to help in any way I can to achieve the organisation's goals and aspirations.’ We look forward to welcoming Matthew to this role.
Laura lives in Colchester with her family and is a registered Occupational Therapist working as Head of Clinical Operations at St Helena, a hospice charity in north Essex. MS is one of the life-limiting illnesses that Laura helps to support in her role.
Laura is a strong believer in choice and independent living in spite of, and not limited by, a life-limiting diagnosis.
From a personal point of view, Laura’s sister-in-law lives with MS and as a family member, Laura has followed and supported her journey to date.
Charlie Stebbings is 25 years old, currently living in London and works for a sports, media and entertainment headhunting and consultancy firm. In his spare time, you’ll normally find him watching or playing some form of sport.
He has been exposed to the harsh realities that MS can bring for the last 10 years when his mother was diagnosed with relapsing remitting MS.
MS-UK was the charity that he identified with most strongly and therefore when the opportunity arose to take up the position of trustee, Charlie says it was an easy decision to take.
‘The work MS-UK does is integral to the fight against MS and ensuring that those who are affected in any way have the support and knowledge to best deal with the condition. Whether you, a family member or friend have a diagnosis of MS, learning to live with the condition is a challenging task for all and there is no substitute for having the support of those professionals who you know are always there to help if needed,’ Charlie said.
Charlie believes there is plenty of opportunities for him to influence the fantastic work currently undertaken by MS-UK and he can’t wait to get started.
We are sad to see Martin retire from MS-UK and wish him all the best for the future. This is an exciting time for MS-UK to look forward to all of the amazing work we can do with our new look Board of Trustees.
This weekend I had a fantastic day cheering on our amazing #TeamPurple swimmers at this year's Children with Cancer UK Swim Serpentine - thank you to everyone who made the day possible! The water was a lovely 17 degrees and the sun was shining as we made our way to Hyde Park to set up our MS-UK stand in the festival area.
We were thrilled to have 21 swimmers taking on challenges in this year's swim and every penny they have raised will help us continue our work supporting people affected by multiple sclerosis (MS). Our fantastic fundraising total already stands at over £10,000 and it makes such a difference to our work at MS-UK, thank you!
A thousand people at the event achieved their London Classics Medal this year, including four of our very own #TeamPurple swimmers - congratulations! One of our London Classics Medal winner even learnt to swim this year just to get it on Saturday!
A massive well done to everyone who took part in the Children with Cancer UK Swim Serpentine and thank you to everyone who volunteered with us on the day to make it such a special atmosphere for our amazing swimmers.
Can't wait for next year!
Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at email@example.com.
This week the UK is set to see soaring temperatures, with most places reaching temperatures between 34-35 degrees according to The Met Office. They have also reported that the South East of England could see it rise to an immense 37 degrees. Whilst some may bask in the fact that we’d normally have to pay to experience such hot weather outside of the UK, others may have feelings on the opposite end of the spectrum. People who are affected by multiple sclerosis (MS) have widely differing symptoms when it comes to heat sensitivity, which is why we are going to give you some top tips on how to keep cool in this weather…
1 ) Wear weather appropriate clothes
Whilst wearing shorts or loose clothing are apparent ways of keeping cool, changing your choice of footwear is a good way to go too. Wearing trainers or closed-off shoes can affect your whole body in hot weather, as there are lots of pulse points around your feet and ankles. Switching to some appropriate sandals can help your feet breathe, or alternatively, dunking your feet in some cool water when you take off your shoes to cool off!
2) Chilling your sheets before bed
Despite being a short-term solution, chilling your sheets in a sealed bag in the fridge for a couple of hours before you go to sleep can help you feel cooler. Although your own body heat will heat up the sheets fairly quickly, it can help your body cool in that period, which in turn could help you drift off to sleep easier.
3) While you’re out of the house, close your curtains
When you leave your curtains open, it allows sunlight to come through and essentially heat the area like a greenhouse. When closed, the curtains will prevent this greenhouse effect beyond your window sill and keep your house much cooler.
4) Unplug electrical plugs that aren’t in use
Plug sockets that are filled with electronics that you aren’t using will generate more heat. If the plugs become too hot, especially in a heatwave, it increases the chance of a fire hazard as well. So it may be a good idea to lose the unnecessary electricals at this time of year!
5) Invest in Kool-Ties or Cooling Vests
Kool-Ties are simply something you tie around your neck, can work for up to three days, and cool the whole body through cooling your neck. Cooling Vests have special cooling crystals incorporated into the material which are soaked in cold water, then can hold the temperature for a substantial period of time.
Other ways to help keep cool in this hot weather can be taking regular cold drinks and wrapping a cold damp towel around your neck.
Last year, MS-UK launched its first ever corporate fundraising challenge. Dubbed the 925 Challenge (only very slightly inspired by the Dolly Parton hit, ‘9 to 5’), we invited local businesses to try and raise at least £925 in nine weeks, two days and five hours.
It proved to be a huge success. Teams from Ellisons Solicitors, Charles Derby Financial Services, Harp Commercial Interiors, Whitehall Electrical, Team Pivotal, Push Energy, The White Hart, OPM Response and Direct Solutions, all entered into the spirit of healthy competition and let their creative side run wild on their quest to beat the countdown clock!
The 925 Challenge returns in September and this time it’s going national! We are on the hunt for ambitious companies from every corner of the country who want to gather work colleagues together for the ultimate test of teamwork and outside the box thinking.
There’s no right or wrong way in which teams can raise the golden £925. Plan to raise funds by sponsoring the construction of a giant pyramid of cards? Go for it. Fancy hosting a slinky race? A little strange, but be our guest. Whatever shape the masterplan takes, your fundraising efforts will inspire camaraderie, raise the public profile of your company and potentially bring your local community together.
The challenge is set to launch on Thursday 12 September 2019. Then, nine weeks, two days and five hours after the first second ticks over – Saturday 16 November to be precise - the countdown clocks will be stopped!
Which team will prove to be the most innovative or imaginative? Who can showcase what it means to be a true team? Prizes to answer these questions and more will be handed out at an awards evening held on Thursday 28 November.
With MS-UK being CBW’s Charity of the Year, we got a team together to do a 100 mile bike ride on Saturday 29 June (the hottest day of the year).
The ride was completed (by most) on Saturday.
After months of hard training (or days in my case!) the day was finally upon us. Turned out to be the hottest June day since the 70s. Temperatures predicted to be about 33°C. We had a team of seven colleagues and were joined by two clients as well.
Everyone had arrived by 7:00 ready for their bacon sandwich from Leman Café who kindly opened up just for us. Nine clueless individuals set off at 7:40am heading west in the general direction of Reading. Taking the cycle superhighway from the office to our first landmark, the Houses of Parliament. I looked at my watch tracking the distance and time and we had clocked up the first three miles. I thought to myself, this is easy. In jovial spirits we started to head out of the city passing Craven Cottage (the home of Fulham FC), through Chelsea and eventually crossing Putney Bridge. Seven miles down and no issues.
First Stop – Richmond Park (8:45am). First toilet and refreshment break. After the short stop we set off, with our sights set on the next part of the trip. The tunes went on. Listening to some classics such as Ebeneezer Goode, Rhythm is a Dancer etc. the team got in their Rhythm until the sat nav took us off road. We went wrong somehow, somewhere.
We followed the Thames path towards Hounslow. Things were going nice and smoothly setting a good pace along flat roads passing Heathrow, through Staines (we saw some great towns!) and on to Runnymede, our second stop. 22 miles down and the heat was increasing. It was 31°C and refreshments were needed.
Final Stop - The George pub, in the suburbs of Reading. The clock had clicked over 50 miles, we had finished the outward bound journey, completing it in 4:43 (riding time 4 hours) and it was time to stop for a well earned lunch. We dived straight in the pub asking for menus and it was quite an easy choice. Seven Ham, Egg and Chips, a Chicken Burger and the vegetarian option with nine cokes. Checking the thermometer in the pub garden, it was showing 38°C!!!
The finish line ended up being Westminster after a few wrong turns throughout the day had meant that 100 miles was clocked up before getting back to the office.
During the journey back we sadly had three people that had to drop out due to the heat and dehydration.
MS-UK has been very supportive during the build up to the ride and gave plenty of tips which really helped organising. At the end we raised just over £2,500. It was a great day with a great team. We are looking at our next ride soon (hopefully on a cooler day).
Every penny raised by Tijmen and his team at CBW helps us support even more people affected by multiple sclerosis (MS). Get in touch with the fundraising team today to find out more about getting involved!
On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.
MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop
le living with multiple sclerosis (MS) every week.
The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.
I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!
The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.
I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!
Amy Woolf, CEO
This week is national Volunteers' Week and we are celebrating by saying a big thank you to our amazing volunteers. Last year over 130 people volunteered with MS-UK in all sorts of ways. Together you donated 500 hours of time to MS-UK and helped us be here for people affected by multiple sclerosis (MS). We literally couldn't do it without you, thank you!
This year we have lots of opportunities to get involved. You could join our fantastic cheer squad and support our fundraisers to make it over the finish line at a national event. Or you could come into our offices in Essex and get stuck in behind the scenes. We are also currently looking for volunteer counsellors to help us offer telephone counselling to more people who may need it across the UK.
Whatever you decide to do, we'll be here every step of the way to support you. You can share your skills and develop new ones, gain some experience working with a national charity and we provide you with a full induction and ongoing support.
In the mean time, you can find out more about Volunteers' Week across the country on the NCVO website. If you already support MS-UK, don't forget to download our Twibbon to show the world you are part of #TeamPurple.
Best wishes and happy volunteering!
Sarah Wright, General Manager
MS-UK will be closed on the bank holiday following this weekend, so just to remind you of the times:
Friday 24 May - open from 9am - 5pm
Monday 27 May - closed
Thank you all and do have a lovely bank holiday!
Best wishes, The MS-UK team
I wanted to let you know about a new volunteering opportunity here at MS-UK.
We are looking for Volunteer Counsellors to join our team to provide telephone counselling sessions to those affected by multiple sclerosis. If you have experience of delivering person centred and telephone counselling please get in touch. The role is based at our office in Colchester and full training will be provided on 28 and 29 May 2019.
You can find out all about this opportunity on our volunteering web page, and the closing date is 10 May.
MS-UK Counselling is the only service of its kind available to people diagnosed with multiple sclerosis in the UK, so you will be joining a dedicated team that really makes a difference.