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.
Last week we saw the annual ECTRIMS meeting in Berlin where the world’s multiple sclerosis (MS) experts, consultants, researchers and neurologists came together to share their knowledge and keep up to date with the latest developments in MS.
To help you trawl through the 1,500 plus research extracts that were published for the conference, we've hand-picked the top five stories that you need to know about!
Don’t forget to share your comments and lookout for more ECTRIMS news in the coming weeks!
Editor of New Pathways Magazine
Despite the torrential rain and howling wind of Storm Callum trying its utmost to blow passersby into The Serpentine, all 13 of our #TeamPurple runners managed to complete the Royal Parks Half Marathon on Sunday 14 October.
The day started mildly enough. Armed with 'clappers', a megaphone and a swathe of MS-UK purple flags and banners, our cheer squad hunkered down in Kensington Gardens, just around the corner from the race's 11th mile. Two miles east, over at the start line in Hyde Park, the #TeamPurple runners stretched their legs and prepared their pre-race rituals.
At 9am the race began. Runners in colourful vests and costumes (including a terrifying half-tiger, half-human onesie hybrid) embarked on a route that took them past Buckingham Palace, underneath Admiralty Arch and then looped back through the lanes of London's beautiful royal parks between autumnal trees ablaze with golden leaves.
It wasn't until the stopwatch clicked over to the 45 minute mark that the heavens opened. Rain fell in sheets. Paths became puddles. Waterproof parkas were pulled on in record time. Still the runners pressed on, their final miles fuelled by the whooping and hollering of our motivational cheer squad!
Thank you to all our on-the-day volunteers, the #TeamPurple runners (who are most likely still drying off), and everyone who donated and helped us raise a quite incredible £5,261 so far! Because of all your hard work and commitment, MS-UK can continue offering vital support and services such as MS counselling to those that need it.
Do you want to be part of something great? Then why not join the #TeamPurple running team?
In the task, you will be presented with fifty short descriptions of different scenarios. This will be split into ten blocks of five, with a rating task after each block.
Using a 4-point scale, the researchers would like you to rate how similar in meaning each sentence is to the description that you read with that title. The ratings will be used to inform the materials for tasks, and it’s completely anonymous.
You can do the task online using this link: https://kcliop.eu.qualtrics.com/jfe/form/SV_5cAkSnZHlxPZ1nT
Chew’s research is focusing on identifying the cognitive mechanisms which underpin and maintain anxiety surrounding illness uncertainty within MS. Jowinn Chew is supervised by Dr Colette Hirsch and Prof Rona Moss-Morris.
This weekend our amazing #TeamPurple runners will be taking on the challenge of the Royal Parks Half Marathon - good luck!
The event kicks off at 9am on Sunday 14 October and is set in four of London's Royal Parks: Hyde Park, The Green Park, St James's Park and Kensington Gardens. It is the perfect autumnal tour of central London’s most exquisite outdoor spaces, and we can't wait to cheer everyone on!
If you can't make the event but want to stay updated, you can follow @MSUK6 on Twitter and enjoy the action in real time!
Good luck from all of us here at MS-UK, your efforts mean we can support people affected by multiple sclerosis to really make the most of each day - thank you!
It’s World Mental Health Day, an annual day to highlight the importance of looking after your mental wellbeing that is recognised by the World Health Organisation.
To recognise the day, the Prime Minister Theresa May has appointed a minister for suicide prevention. Jackie Doyle-Price will add this to her role as Health Minister to help tackle the stigma surrounding suicide.
Here at MS-UK, we have been told that when it comes to living with multiple sclerosis (MS) the mind is often overlooked. That’s why this time last year we launched MS-UK Counselling, a confidential telephone counselling service for people with a diagnosis of MS.
I wanted to let you know a bit more about it, as it is World Mental Health Day. The only service of its kind, MS-UK Counselling is focused on helping people with MS explore the emotional impact of living with this condition.
It is very common for people to struggle with coming to terms with a diagnosis or dealing with the uncertainty of how their condition may progress. For some, MS-specific counselling is crucial in supporting them to come to terms with their condition, understand their feelings and live positively with MS.
So if you are thinking about your mental health today with all the media attention on World Mental Health Day, do visit our web page to find out more about MS-UK Counselling. Our team of counsellors are here to help and support you,
Head of Services
It's Monday morning, but we are still excited from the amazing weekend! Our amazing #TeamPurple swimmers Jeremy, Janice and Kirsty all braved the cold waters in Hyde Park on Saturday 22 September at Swim Serpentine - and they all achieved their London Classics medal!
Swim Serpentine is a one-day open water swimming festival staged in the heart of London. Organised by London Marathon Events, the festival is held in and around the beautiful Serpentine in Hyde Park, the venue for the open water swimming competition at the London 2012 Olympic Games. Early Saturday morning myself and Laura from MS-UK set off in the rain to make sure we were ready to cheer on our dedicated swimmers, and we were not disappointed!
Now in its third year, a record breaking 6,000 people entered Swim Serpentine this year...the atmosphere was electric and it was fantastic to hear so many people were going to complete a 2 mile swim and enter the London Classics hall of fame...The London Classics is a challenge that recognises participants who have completed all three London Classic events - the Virgin Money London Marathon, the Prudential RideLondon-Surrey 100 and Swim Serpentine. What an achievement!
For Jeremy, Janice and Kirsty, they realised this dream on Saturday and I was so proud to be part of the moment they grabbed their weighty London Classics medal - congratulations guys!
If you're inspired to join #TeamPurple, visit the fundraising section of our website to find out about all the different things you can do, or get in touch with the fundraising team. Plus don't forget to check out the photo album from Swim Serpentine on our Facebook page!
To all the swimmers on Saturday, a massive well done from MS-UK!
Fundraising Manager, MS-UK
Fancy being in with a chance of winning a £25 Debenhams gift card?
This weekend is the last chance to make sure your voice is heard in our supporter survey - so please do let us know what you think by taking our survey! The survey closes on Monday 24 September 2018.
The prize draw will be on Tuesday 25 September, so by next weekend you could be going shopping!
Good luck, and thank you for giving us your feedback, it really does help us plan for the future,
Fundraising Manager, MS-UK
The story first caught my eye Monday morning when the BBC ran a piece on their breakfast show. I was getting my Son ready for school and heard the words ‘multiple sclerosis’ so I turned up the volume and with one ear listened in. The piece was about the UK adopting a proposed new measure of poverty and the BBC had chosen a woman living with multiple sclerosis to help illustrate the change.
They explained that unlike the current measure bought in under labour (Relative poverty), a new measure would take into account a number of ‘inescapable costs’ that related to particular people within the UK. One of these was disability. Without getting into the pros and cons of each or indeed any such measurement I focussed on what this was telling me about the people we are here to support.
It’s long been understood that the costs associated with daily living with a disability are, on average, much higher than for those without. So as I heard this, my first reaction was – ‘too right’ and ‘about time’.
The following day, I caught the same story, but this time in the Independent and seeing the full story, in black and white and with full concentration I began to reflect more deeply. And it dawned on me that my team and I have a huge challenge ahead of us if we are to support people affected by MS to live happier, healthier lives.
At MS-UK we are currently writing our next three year strategy – everyone is very excited about what we could be doing next, but underneath all that excitement is the ever present question of how to fund the services that people need from us – now and in the future. The pressure is always on for charities to be ‘sustainable’.
And I realise, with 11 million people in the UK recognised as having a disability, and 7 million of these potentially living in poverty, I’m not convinced it is even possible. That’s 64% of the disabled community living in poverty – and that’s not even taking in to account those that do not ‘live in poverty’ but at the same time do not have a disposable income to pay for the support they need - so many people cannot afford to pay for it. So who will? With struggling health and social care and reductions in government funding – (locally and nationally) – where does the money come from?
We’ve been fortunate so far at MS-UK that people believe in what we do and how we do it. These people support us year in year out through donations, fundraising events and a huge number of other activities – I cannot thank these people enough and I can only hope that the generosity of the UK public continues, so we can be here for people affected by multiple sclerosis for so long as they need us. After all, it seems we need supporters now more than ever.
Back in September 2017 my husband, Peter, decided it would be a great idea to challenge himself and he applied for a place in the Prudential RideLondon. He spent the next few months trying to persuade me to do the same! I caved in eventually and registered too and what a surprise when we got places. Bearing in mind that the closest we had been to bicycles was gentle pottering around the country lanes with our children, this was most definitely going to be a challenge.
The ride follows the Olympic course with 30,000 amateur cyclists taking on a cycling challenge like no other through London and Surrey on a similar route to that of the London 2012 Olympic Road Cycling Races. The Prudential RideLondon-Surrey 100 starts in Queen Elizabeth Olympic Park, then travels through the capital and onto Surrey's stunning country roads and through the Surrey Hills (OMG!), before a spectacular finish (here's hoping!) on The Mall in central London.
Or, at least this is what is supposed to happen! And so the training began... 0-100 in five months!
To incentivise us when our energy and enthusiasm was flagging we decided to do this for a fantastic cause - MS-UK. We were doing this to raise funds for all those that are affected by MS and would, no doubt, love to be able to even ride a bike. We were particularly motivated by our lovely neighbour, Alex, who has been living with MS for about 10 years. She is still only young, never complains and is always seen with a big smile and enthusiasm for life. The fact that her husband takes her out on a tandem touched me and clinched the decision for the fundraising efforts. We have no excuse other than being overweight, unfit and generally lazy!
Training started in earnest in April (the event was scheduled for 29th July!) with a 7.7mile cycle, which was a struggle and made me realise we had our work cut out. Anyway, to assist with the motivation to continue, especially on the dark, damp days we decided to write some updates on our fundraising site (virginmoneygiving.com/JaneUnwin1) with the promise of more updates and Lycra clad photos for donations. The thought of Lycra clearly worked its magic as with every posting the funds began to creep up.
Whilst I use Facebook I am not savvy with other forms of social media, so all fundraising plugs were posted on Facebook only with promises to stop telling the world just how far we had cycled on any given day as soon as the event was over and we had reached our target of £1,000. Together with some gentle persuasion on family, friends and work colleagues we surpassed our target in a short space of time. I’m afraid with a fulltime job, three children and all the training our fundraising efforts were restricted to the aforementioned only. Oh, and my gorgeous Mum spoke to all her friends to tell them that her daughter had ‘lost the plot’ and 'committed to the most dangerous thing imaginable and really deserved to raise funds for participating in the event'. In fact my Mum’s donation was to try and convince us not to take part!
As the training progressed we decided to join a local, friendly cycle group called the Jersey Rouleurs. Turns out lots of concentration is required for group cycling as you need to watch the back wheel and feet of the person in front. A few more hills nailed and reassurance from Ride London veterans that we have it in the bag! We wished we shared their confidence, but anyway it was onwards and upwards. It was too late to back out now as the donations continued to pour in. The biggest motivation was all the people we would be letting down if we didn’t put in the hours required to participate and succeed.
Before we knew it the big day had arrived and despite the most appalling weather (never having cycled in the rain before, after 7.5 hours in it we are veterans) we did it! The months of training, the aches and pains, the arguments, the early mornings and the time commitments were all worth it. We now have a new hobby, healthier bodies and new friends but most importantly of all we have raised over £3,600 for such a worthy cause.
We felt very humbled to learn first-hand what a difference the fundraising makes. Our lovely friend, neighbour and inspiration for this adventure thanked us for our efforts and explained that without these donations her pain management would be a very different story.
I, personally, have never won a medal and am very proud of my achievements and want to thank Peter for his crazy suggestion, for challenging me, keeping me going when the going got tough and for staying with me when it mattered. Our mantra - “Team work makes the dream work” applies not only to us but to the organisers of the event, our donors and the amazing fundraising team at MS-UK who made us feel special and appreciated. Thank you!
If you are ever presented with a challenge and you have the ability to tackle it head on then go for it, but make it worthwhile for others as well. You will not regret your achievement and the feel good factor just knowing that your efforts have been invaluable to someone else.
Jane & Peter
When you get diagnosed with multiple sclerosis (MS), emphasis on what disease modifying treatment to start, if you can, or drugs to help your symptoms is at the forefront. Your mind is often overlooked.
I was diagnosed with secondary progressive MS recently. I knew it would have an impact on my mental wellbeing. I felt very alone. I knew I needed to talk about my feelings and not explain MS. Even though NHS psychology was mentioned, my consultant said there would be a wait. I knew I couldn’t wait.
After reading on their web site and social media, I was aware MS-UK offer a qualified professional BACP registered counselling service which is confidential, open to people living with MS, and is the only service of its kind available in the UK. The biggest thing was picking up the phone and asking for a referral.
As the counselling sessions lasts 50 minutes, are weekly and over the phone. It gives a good reason to drop little man off at his Granny’s, so I can go home to talk freely about my thoughts and feelings. The counsellors are friendly and they get MS, so there’s no explaining. The counsellor is not there to give advice, but through talking I’ve explored how news of my diagnosis has an impact on my mental wellbeing.
It’s just the beginning for me but having the service has helped, especially if you don’t always have timely access. A well-known telephone provider had an advertising campaign in the 90s, titled “it’s good to talk”. Like the MS-UK counselling service, it is “good to talk”. I’m glad I picked up the phone.
To hear more or follow me, visit www.poorlyparents.wordpress.com, or search Poorlyparents on Facebook and Mummywithmsjmhc on Twitter.
In our latest guest blog, Rossia Mockett tells us how she's turned a love of sewing into a 'stich-perfect' way of supporting MS-UK!
My eldest son was diagnosed with multiple sclerosis (MS) in 2015, it came as a shock for him and for us as a family, then came the emotions and dealing with the diagnosis which wasn’t easy for any of us. As time went on we searched on the official MS charity websites (including MS-UK) which were helpful to us in gaining a better understanding of MS and some of the difficulties that come alongside living with MS. We found it helpful to be able to read the stories of others and to be able to know that our son was not alone in what he was going through.
This year I decided that I wanted to raise money for three main multiple sclerosis charities, one of them being MS-UK. I love sewing, so earlier this year I launched my business, New Barn Crafts on Etsy. I then applied to craft fairs and took my handmade items along to them, taking with me my MS-UK collecting boxes and literature. This has been successful because people could purchase an item from my stall or donate to one of the three MS charities of their choice. On some occasions they do both! I’ve really enjoyed doing the craft fairs as I’ve met some wonderful people and had some great conversations about their loved ones, family members, or friends who are living with MS. I have so far raised enough money for a Pin for Pounds badge which I am thrilled with!
Where possible I think that it’s important that others try to get involved and help raise money for such a great cause! It’s given me great pleasure that, even doing something as small as this, you can make a difference. If I can do it anyone can do their bit to raise money for an amazing charity such as MS-UK. As we come to the end of the summer, and the craft fairs are finishing up, I look forward to developing my Etsy shop and New Barn Crafts Facebook page further and get some sewing completed for next year’s forthcoming events.
Want to get your hands on a limited edition, 25th Anniversary MS-UK pin badge?
I am delighted to say that on Thursday 06 September we officially launched our 925 Challenge at Colchester Golf Club!
The 925 Challenge will see 11 teams from local businesses go head-to-head in our very first corporate fundraising challenge, during which time they have 9 weeks, 2 days and 5 hours to raise £925 for MS-UK!
The challengers taking part include teams from Ellisons Solicitors, Charles Derby Financial Services Ltd., Harp Commercial Interiors Ltd., Whitehall Electrical Ltd., Team Pivotal, Push Energy, The White Hart, OPM Response Ltd., Direct Solutions and BeagrieCo Ltd.
The 925 Challenge is the charity’s first ever corporate challenge as part of our 25th anniversary celebrations, and I am so delighted we kicked off in style. You can check out the photos from the launch event in our Facebook album.
Thank you to every business taking part, we can't wait for the games to begin!
Jill Purcell, Fundraising Manager, MS-UK
With the recent announcement that the government and a number of major high street brands are backing the UK’s first ever inclusive shopping day aimed at supporting the disabled and immobile, accessibility in our cities and towns will be vastly improved for those with multiple sclerosis (MS).
Called ‘Purple Tuesday’, the innovative scheme will take place on 13 November and will see retailers including Argos, Asda, Sainsbury's and Marks & Spencer introduce new measures to make shopping a more comfortable experience, especially for those in mobility chairs.
But whilst this is much-needed progression, many people are unaware of the experiences that approximately 10,000 MSers deal with before they can even enjoy the luxuries of shopping and eating out – things we often take for granted.
For instance, someone who has the condition may have to rely on a wheelchair or mobility chair as a means of getting around. Unfortunately, this can involve a lot of hoisting, such as from a bed to a chair, which can put a considerable amount of pressure and strain on loved ones.
Once in the chairs, accessibility can still be an issue. If the chair can’t be modified, for example, simple tasks such as going out into the garden, or even entering the lounge or living room from the bedroom to spend time with family and friends can become an unnecessary challenge.
If an immobile person is deprived of accessibility for a prolonged period of time, isolation and loneliness can become a daily issue. In the worst-case scenario, a lack of accessibility can have a detrimental effect on the person’s mental health, with illnesses such as depression arising from feeling as if they have no freedom or independence.
So, it is important to remember that mobility is about more than just making places accessible. Yes, chairs the immobile use must be inclusive to utilise accessibility, but ultimately, they need to ensure the user is kept comfortable and safe.
A bespoke mobility chair, for instance, can be adapted to cater to an individual’s specific needs. Adjusting a specialist lounge chair to suit the user’s environment or varying physical needs, will make spending quality time with family and friends a more comfortable and accessible experience.
As well as being portable, multi-adjustable, with tilt in space capabilities and light in weight, bespoke chairs can provide those with MS with a greater sense of independence and freedom, while offering the highest level of security, safety and stability.
Overall, as a nation striving for more inclusivity, we must make mobility more comfortable for those with MS. Yes, retailers recognising the need to better improve accessibility for mobility chair users is fundamental in reaching our ultimate goal of creating a fully inclusive society, but we must also endeavour to make the user’s quality of life as comfortable as possible both in and outside of the home.
Let’s continue to talk about accessible shopping to raise awareness. Why not share your good and bad shopping experiences, or what mobility aids make shopping possible for you. Visit out Facebook page to add your comments.
Stephanie Morrison tells us how her love for cakes inspired her and her two daughters to bake some doggie treats in aid of MS-UK!
It was the summer holidays and I was trying to think of ways my two little girls (4 and 3 years-old) could get involved with fundraising. If we had baked cakes, we definitely would of eaten them instead of selling them so we decided to bake cakes and cookies for dogs instead!
We’ve got a Westie so decided she could be the taste-tester and my eldest daughter suggested we make samples so the other dogs could try them first too.
It was pretty easy to find tasty recipes online, mainly including peanut butter, so we got cracking. The girls love baking so it was a fun activity to get them involved with and they enjoyed decorating them too.
Betty (our dog) decided they were pretty yummy, so we put them on a tray with little bags and a money box. We took them to all our neighbours with dogs and a local country resort and they sold out pretty quickly. I made my girls explain what they were and what the charity was and they were honestly so excited that people wanted to buy them and lots of people got in touch after to say how delicious they were.
We made £102 which we were very impressed with!
My 36-year-old cousin has multiple sclerosis (MS) which was quite shocking when we first heard but she still lives a fairly normal life at the moment. If we can make even the slightest bit of difference to helping anyone with MS then we will be very happy.
Fancy flexing your creative muscles and doing something different to raise money for MS-UK? Have a chat with our fundraising team today!