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MS nurses – the good, the busy and the gaps in services

22nd April 2015 by jane.havercroft

At the MS Trust we believe that everyone with MS should have access to an MS nurse. MS specialist nurses provide clinical advice and support on most aspects of MS. They often act to co-ordinate services for people with MS, referring someone on to a doctor, therapist, or other appropriate services. Many people with MS consider them to be a lifeline but, sadly, we know this is not the case for everyone.Ms Nurse sitting at a desk

Gaps in services
A report published by the MS Trust in 2014 found that there is a shortfall of 62 MS specialist nurses across the UK, with the most significant shortages in England and Scotland. Not surprisingly, we have been contacted by people who say that they do not have an MS nurse and who would like to know if there is anything that they can do. The answer depends on why there isn’t an MS nurse in their life. For example;

  • Some people were diagnosed some years ago when there were fewer nurses in the UK and none at all in their area. There may be one now but, for some reason, no contact has ever been made. You can read in our newsletter Open Door, how an MS nurse in a newly created post in south Cumbria had to seek out people with MS in her area.
  • Some people lose contact with the MS team. Maybe they had a nurse before but, for some reason, contact was discontinued or has been lost.
  • Posts may be vacant or the nurse may be on maternity leave or sick leave. In larger groups, the other MS nurses will try to cover the caseload but, if it’s a one nurse group, there is likely to be a gap in services.

In these cases, it is a good idea to look at our map of MS nurses to see if there is a nurse in your area now. If you click on the flag nearest you, you should reveal the contact details for the MS nurse including which areas they cover and how you can make contact with them. This might be self referral (if you are already diagnosed with MS, you can contact them direct) or it may be through your GP, neurologist or other health professional. We try to keep the map up to date but if you any spot errors, please let us know.

We’d encourage you to go ahead and make contact if you need the advice of an MS nurse rather than waiting for the system to find you. If you’ve never seen an MS nurse or not seen one for ages, you might need a review of your MS to see if there are any treatments or other measures that might help. Sometimes symptoms have increased bit by bit and it’s time to seek advice. Sometimes new treatments have been developed which you may not be aware of.

If you can’t find an MS nurse in your area, give the Information Team a call on 0800 032 3839 or 01462 476700 or email us on infoteam@mstrust.org.uk

We can’t magic up an MS nurse if there isn’t one but sometimes we can advise on what’s going on and whether there might be a way forward for you.

The busy
We are also contacted by people who say that the service from their MS nurse did not live up to their expectations. There can be many reasons for overstretched services, for example:

  • Many MS nurses have a very high caseload. Our report published in 2014 showed that 30,000 people with MS live in areas where their specialist nurses are supporting twice the sustainable number of people with MS. Consequently, it seems unlikely that someone with a high caseload will be able to respond to a phone message or email or provide a clinic appointment as quickly as someone with a third as many people to look after.
  • Some nurses are part time so delays in responding are inevitable on non-working days
  • Some nurses will have to cover for colleagues who are on maternity leave or sick leave or on holiday. In a team of two MS nurses, this means an instant doubling of their caseload.
  • Some MS nurses have been asked to work on the wards for one or more days per week to cover for a shortage of staff in other areas. The service for people with MS is often affected.
  • People in some areas will have an MS nurse closer to them than people in other areas. A quick look at the map of MS nurses shows that they are few and far between in Wales and the north of Scotland. However, sometimes there is good news, such as when a post was created in the Western Isles for people who previously had to use the service in Glasgow.

In addition, there may be other reasons why someone has been disappointed with the service that they received. For example:

  • Some nurses will have been longer in post and have more experience of MS than other nurses.
  • Some issues just can’t be solved and nurses are not miracle workers. Perhaps someone has tried a range of painkillers but is still in serious pain. They may be disappointed that “nothing more can be done” but, if all the options available have been tried, the MS nurse may be unable to do any more.
  • Nurses are not all powerful (unfortunately) and will be constrained by drug licensing laws, local prescribing guidelines and the availability of other services that they might like to refer someone to (perhaps a pain clinic or rehab service).
  • MS nurses are human beings and so are people with MS. We all gel better with some people than others and, as in any aspect of life, we find it easier to build good relationships with some people than others. It can help to prepare well for an appointment or phone conversation so that both of you can make the best use of the small amount of time that may be allocated (the nurse may be just as frustrated as you that the system only allows perhaps 15 minutes to review all of your MS). Going in with a list of priorities can act as a focus for discussion.

If someone is unhappy with the service they have received, they can ask to transfer to another MS nurse, if there is one. Also, they may prefer to visit their GP for help with some issues. Sometimes it is appropriate to have a chat with PALS (Patient Advice and Liaison Services) who can help to resolve concerns or problems with NHS services. This service applies to England but there are equivalents in the other countries of the UK.

The good
Many MS nurses do a fantastic job and go way above what is required of them. For many people they are their first port of call to answer questions or refer them on to other services. We would like to celebrate their achievements. If you have an MS specialist nurse, physiotherapist, occupational therapist, or other MS professional who’s made a real difference for you, why not share your story on Facebook or Twitter? And, because a picture’s worth a thousand words, if you have a great MS specialist you’d like to thank, why not take an MS selfie of the two of you and share it on our Facebook page?

How the MS Trust supports MS nurses
One of the MS Trust’s aims is to ensure specialist services for all and we are trying to make this a reality by:

How you can help
You can help us support MS nurses through the MS Nurse Support programme. Thanks to the help of our supporters over the last few years, we have been able to step up our vital work fighting to keep our MS nurses in post. Changes happening in the NHS now mean that specialist MS services are at still at risk, with funding being lost or re-assigned.

We can also continue to support our MS specialists every day, by providing them with the latest information, keeping them up-to-date on current research, and giving them access to our specialist training courses. You can read more here.

In 2015, we launched our Heart of MS campaign to help improve access to MS specialists for people with MS. We want to ensure that everyone with MS gets more of the care they need.

During MS Awareness Week we often work especially hard to raise the profile of all MS specialists and the difference they make. Check out our  MS Awareness Week page to see what we are doing this year and get involved.

What difference can MS specialist services make for people affected by MS?

22nd April 2015 by Stephen

MS Awareness Week begins next week on Monday 27 April.  This year we are working to highlight the importance of MS services – the MS nurses, physiotherapists, occupational therapists and other health professionals with specialist expertise in MS. But what exactly does a good MS service look like, and what difference can it make for people affected by MS? To find out we visited the Rehabilitation Unit in Richmond, southwest London.

We spent a day with the MS nurses, physiotherapists, occupational therapists and other professionals who work as part of a multidisciplinary team, making sure people living with MS get a properly holistic service, across the range of symptoms that are part of MS. In just one day we saw many examples of the profound impact that these professionals have.

DSC_8933In the morning we travelled with the MS specialist nurse Francesca on a home visit to Shirley, a woman living with progressive MS. Shirley told us how much she appreciated the service at Richmond, the fact that she had a single contact she could turn to for advice and information in managing her MS. In the past when she dealt with a different service she would often speak to a different person every time she called, and she felt this meant she often had to explain her situation from scratch and didn’t get any continuity of service. She really appreciated the home visits as now that she’s less mobile it wasn’t always possible to visit the clinic.

DSC_9044Later that morning we spoke to Erica, one of the unit’s physiotherapists. She works with people with a range of neurological conditions, including MS and Parkinson’s. She told us how much she appreciated the RIMS conference, which the MS Trust co-hosted in 2014. “It was great to hear other therapists talking about ways of making exercise more accessible and user friendly. Fatigue is a big issue for the people I see, and I found the talks given by people who have MS thought provoking – they will really help me communicate better in future.”

While were in the Rehab Unit’s gym we were invited to take part in a balance class for people with MS. It was great to watch the physio team lead the class in a range of simple exercises that can make big difference in staying active and avoiding falls.

One of the women who took part in the balance class was Jane. As soon as the balance class was over she was able to walk straight into a meeting with her speech and language therapist, Cate. As an actor, speaking clearly is very important for Jane, but she recently found her MS was causing her to speak too quickly. With the help of an iPad, Cate was able to record Jane reading a few paragraphs of text and then play the recording back so that she could identify what was causing particular problems.

DSC_9189Seeing Jane going from the balance class to the speech and language therapist was a great advert for a “joined-up” multidisciplinary MS service. The whole team share an office, and the MS nurses told us how good it was to be able to book a physiotherapy session for someone with MS with a physiotherapist who was on the other side of the desk rather than in a different department of an NHS Trust.

In the afternoon we sat in briefly on a consultation between Nasreen and her MS specialist nurse, Ruth. Nasreen told us how traumatic she had found being diagnosed with MS. At first she couldn’t even bring herself to say the words “multiple sclerosis”, and found herself becoming more and more isolated. Her son was scared that his mum had cancer, he was so worried about her.

DSC_9105Nasreen told us how accessing the service at Richmond, meeting her MS nurse, and going on a fatigue management course had turned her life around. Not only did it help her practically manage her energy levels, it played a major part in helping her accept her condition, talk more openly about it with her family and improve her overall wellbeing.

It’s hearing stories like this that make you realise just how important MS specialists can be – not just by helping people manage particular symptoms, or find specific treatments, but looking at the whole person and helping them live well with MS.

We know that some people don’t yet have access to a team like the one at Richmond. That’s why we’re running our Heart of MS Care campaign this year. We’ve seen the difference that MS specialists can make, and want to make sure that more people can benefit from their expertise. If you’d like to help, then add your voice to our campaign and help us spread the word. Together we can make sure everyone affected by MS can access the best possible care.

NB: The names of the people with MS in this article have been changed.

Butterworths’ Virtual Bike Ride for MS Awareness Week

21st April 2015 by laura.percival

Katie Richardson tells us why she has has got her whole company involved in raising funds this MS Awareness Week.

My mum Julie was only 47 years old when the symptoms of MS started. She worked full time and loved her job as a retail manager, thriving as a full time working mother and wife. She was finally diagnosed 7 years later with primary progressive MS, a form of the disease which affects 10-15% of people diagnosed with MS. It took some time, a lot of uncertainty and lots of testing before the final diagnosis of MS was received.

Over the course of 13 years, my family and I have watched Mum go from an independent working woman, to being entirely reliant on us all. Being completely paralysed down her right side, every day chores which we take for granted such as eating, walking, writing, sleeping, even holding her grandchildren, are now impossible without aid. All of our lives have changed. My dad, James, retired early to become Mum’s full time carer.

MS is a disease that not only affects the person who has it, but it affects the family also. The MS Trust is there to support every person with MS in the UK AND their families by providing information, educational events and publications to people with MS, families, friends and health care professionals who provide support for anyone affected by the disease.

Mum’s MS Nurse Barbara Wingrove of Sunderland Royal Hospital is a lifeline to Mum and our family. The help and support provided at every appointment is vital, and for which we are very grateful.

Getting through times like these can be difficult, yet without the work that the MS Trust carries out daily, it would be so much harder. We are so very grateful for every day’s work and every campaign that the MS Trust does. In order to say ‘thank you’, we want to give a little back and support the MS Trust.

Butterworths Solicitors

During MS Awareness Week, to raise funds and awareness for MS, we are completing a Virtual Bike Ride from Team Valley in Gateshead to Paris! We will be taking it in turns to cycle on an exercise bike to cover a total of 583 miles.

Our team is from Butterworths Solicitors, a law firm based in Gateshead, Tyne and Wear. Butterworths also have offices in Carlisle, Penrith and Bury, and fundraising is taking place across our offices during MS Awareness Week. I have been with the firm for many years now and our team is very close, supporting each other every day. I am so proud and honoured to be part of the Butterworths Team and that everyone is getting involved in our fundraising event.

Each and every member of the firm is doing their bit and spreading the word. Mark and Karl came up with the idea of a Virtual Bike Ride to Paris, which we all felt was the perfect opportunity to get our whole team involved in raising funds and awareness. I am so grateful to everyone for their ideas and commitment in a bid to help other people with MS and families around the UK.

The Butterworths Team are Katie, Laura, Adele, Jemma, Mark, Karl, Rebekah, John, Nicci, Sean, Vikki, Sarah, Natalie, Jessica, Danielle, Carole, Angela, Joanna, Shannon, Emma, Kay and Chelsea

1 Bike, 1 Team. from Team Valley in Gateshead to the Eiffel Tower in Paris, Butterworths are being Bold in Blue!! Please support our campaign, every little helps. Thank you to each and every one of you. Go Team! Visit the Butterworths Solicitors fundraising page

MS Awareness Week runs from 27 April to 3 May and this year we want to highlight the importance of MS specialist services. If you would like to get involved and raise funds to help make sure people with MS can access the best possible care, find out more about our Be Bold in Blue fundraising campaign.

Jumping for a reason: my charity skydive

17th April 2015 by laura.percival

Vicky with her husband and three children

Vicky Rapley from Norfolk (pictured right with her husband and children) tells us why she has decided to take part in a tandem skydive as part of our Jump in June parachuting month.

On June 14th 2015, I will be taking part in a tandem skydive at Beccles Airfield in Suffolk. Why? Let me tell you…

In December 2008 I was diagnosed with multiple sclerosis. The diagnosis came after several problems with my health in quick succession, problems including loss of feeling in both hands, loss of sight in my left eye, problems with my balance and extreme tiredness which I now know as fatigue.

The diagnosis was a complete shock. I remember being in the consultant’s office and watching him talk, but having no idea what he was saying as all I could think was ‘will I end up in a wheelchair?’. Having always been an active individual, the thought of losing my mobility was terrifying. My husband and I left the hospital in a total daze. I thought a fish and chip lunch would help, but of course it didn’t!

For the following year I buried my head in the sand and went in to total denial, this was tough to do when I was relapsing and getting new symptoms on a daily basis. Finally I took my head out of the sand and chose to fight. I have never looked back since that day.

I have been on a treatment called Tysabri for nearly four years and, fingers crossed, it is working very well for me. I’ve had one serious relapse in that time, which is a massive improvement on the three per year I was having beforehand.

Daily life can be challenging, on a bad day it takes approximately 30 tablets just to stand up. On a really bad day I am totally bed bound. A normal day for me always includes pain and balance issues; I am also partially sighted in my left eye and have no feeling in my hands. However, I’m used to all of these now and just crack on with life and thank my lucky stars that it was me who got diagnosed and not my children or my husband.

So, based on all of the above, I am of course doing what anyone else would do and jumping out of a plane to raise money for the MS Trust. So far I have raised over £1,500 but would love to break the £2,000 barrier. I also plan on having a coffee morning to hopefully raise more funds.

I can live with the fact that I have MS, I can also live with the fact that there is currently no cure. However, I can’t live with knowing that I did nothing to help.

If you can spare anything at all to help this cause, I will be eternally grateful. Please feel free to take a look at my fundraising page.

You can book your own skydive at one of 20 participating airfields across the UK, find out more about our Jump in June parachuting month.

Share your MS selfie for MS Awareness Week!

15th April 2015 by Stephen

trishna-freya-selfie-2MS Awareness Week (27 April–3 May) is now under two weeks away, and we’re well on course to reaching our goal of having 1,000 people sign up to our Heart of MS Care campaign.

Our campaign is about raising awareness of the need for more MS specialist nurses and therapists to care for the 100,000 people living with MS in the UK today, but we need your help to spread the word. If you have an MS nurse, physiotherapist, occupational therapist or other therapist who’s gone the extra mile for you, why not tell the world on social media?

We asked Trishna Bharadia, who wowed us all with her brilliant performances on the People’s Strictly back in March, to get the ball rolling. She tells us about her MS specialist nurse Freya.

Without my MS nurse, Freya, I would feel like I was out on a limb in terms of ongoing care for my MS. Freya is always at the end of a telephone or e-mail, ready to answer any questions that I have. As Freya has specialist knowledge about MS, she is normally my first port of call whenever I think I may be experiencing new symptoms or if I’m not getting on with a drug. She can also make an informed decision about whether I should be seen in clinic between my annual reviews with my neurologist, and can offer me practical help and support if necessary. It also means my care is targeted. MS nurses like Freya make such a difference to patients because they make you feel like you’re “in touch” with your healthcare team on an ongoing basis!

Trishna

But Trishna’s not the only one prepared to spread the word about the difference MS specialists can make. Hussein and Kathy, two of the people who helped us launch the Heart of MS Care campaign in Bletchley earlier this year, told us why Lesley Catterall and Denise Middleton were such worthy winners of our MS Super Team award last year.

hussein-selfie        kathy-selfie

So if you’d like to spread the word, get snapping and tell us the difference your MS specialist has made for you! You can share your pics to our Facebook page or on Twitter. (And remember to use the hashtag #MSheart!) With your help we can spread the word about the importance of MS specialists, and make sure everyone affected by MS can access the best possible care.

 

 

 

 

 

Freedom pass

15th April 2015 by helena.jidborg

Victoria Rodwell who was diagnosed with MS two year ago blogs about getting a freedom pass for public transport in London.

Victoria-Rodwell

I always thought that a freedom pass was a bus pass for the elderly or for someone severely disabled and unable to walk at all. I am a 29 year old woman, I live in London. I work full time, I have a partner, a dog, love baking, yoga and seeing my friends. I also have MS and I have a freedom pass.

I was diagnosed with MS almost 2 years ago and have since had relapses which have affected my arms, legs and balance. I suffer with chronic fatigue and have at times lost my sight. It was my GP who first suggested that I apply for a freedom pass. I was confused, ‘I wasn’t old’, ‘I could walk ok most of the time’, so why would I need or even be given one?? I looked into it and then found out that I was entitled to this little pass for ‘freedom’. It would mean I could get on buses, tubes and some trains for free and could travel an unlimited amount of times. I looked online and found that I could download the application form where I had to write about my MS, my doctor wrote a supporting letter which I included in the application. I then handed this all in to the post office along with two forms of ID and passport photos.

One month later the freedom pass arrived, now I just had to use it… I felt anxious ‘what if someone questioned me?’ or even just gave me ‘that look’. I started thinking about what people would say, would they question me and how would I answer them?? All of a sudden a gaggle of old women never seemed scarier.

I did manage to use it for the first time though. Head down, avoiding eye contact, breath held as I shuffled on to the bus waiting for someone to challenge me. Nothing happened. I sat down and slid the pass quickly out of sight. It took a few uses but after awhile I started to embrace it. No one has questioned me about it, I’ve had a few funny looks from some people and the odd bus driver but I am prepared if anyone wants to challenge me and can easily list all the reasons why I use it. It is not just my legs being weak or numb or just my fatigue but also the fact that I need to be near a toilet quite a lot of the time and when I am in pain or off balance then no I don’t want to walk half an hour when I could be sitting down and getting somewhere quicker.

I use the freedom pass everyday, having it has meant that I am able to get on transport at any time. I feel more confident when going out as I know that if I am hit by fatigue that I will be able to get home quickly and less stressed. I am also better able to manage my condition as I plan to try and avoid unnecessary fatigue and stress. London can be so busy so getting somewhere quicker has been so helpful to me. Applying for the freedom pass and using it for the first time was scary but now I appreciate that I can access travel and get places easily. It has given me more options and a certain amount of freedom, it is a pass for freedom after all…

Freedom Pass is a concessionary travel scheme that provides free travel to residents of Greater London, who are aged 60 and over or who have a disability. The scheme is funded by local authorities and coordinated by London Councils. You can read more on their website

There are other places in the UK that offers concessionary travel and it may be worth it to check if your council operates such a scheme.

You can read more from Victoria in her blog

Atlantic Lions: an update on the boat

13th April 2015 by Stephen

People often ask ‘how are you getting on with everything for the row?’ And if I’ve got the energy to answer properly, then they have unwittingly let themselves in for a good 30 minute monologue about the gym, food, the success of fundraising events to date, the heartache of the eternal sponsorship search and more food. But there is one thing that they are all interested in more than anything else – the boat. And perhaps quite rightly, as it may well be the most important thing in all of this.

This will be the vessel we use to pull ourselves 3000 miles across the ocean, the seats from which we will row – two hours on and two hours off until we make land fall. In favorable seas it will be our chariot to stride out across the Atlantic, our skiff to surf down waves and pull over the crest of the next. On calm nights it will be our observatory to the stars, dwarfed by the expanse and depth of surrounding darkness. But when the weather turns it needs to be our guardian, our sanctuary from the roaring wind and lashing rain. It needs to self-right and it needs to be water-tight. When all around is against us, it needs to keep us safe. It will be our kitchen, our bathroom and our bedroom, our look out and communication tower. It is to be our home for our time at sea, it is the fifth member of our team and we need to get it right.

‘Tiny Dancer’ was built in 2013 for the last Talisker Whisky Atlantic Challenge. She was a brand new boat for the Atlantic Polo Team – a team of professional polo players (but novice rowers) who went on to win the race that year in 48 days. Just three months later she set out from Australia to Mauritius with the Fast Row West crew and set a new world record for the fasted four-man crossing of the Indian Ocean ever. Still less than 18 months old, she already has a fair reputation behind her!

She is made of carbon and 29ft long and 6ft at her widest. The fore cabin is smaller than the rear and will house mainly equipment (and sometimes Dave). The mid-portion of the boat is all deck and dominated by two rowing positions – seats on sliders just like a concept2 with oar-locks where each rower will have two oars. Down either side of the sliders are hatches which will be filled with ballast, dehydrated rations, energy bars and jelly beans! The life raft and power anchor will sit at the feet of the stern rower. The power anchor is a bit like an underwater parachute and is deployed in bad weather to try and hold your position. In comparison to most traditional boats (where this would live inside) this has its own outside locker to keep the wet rope and fabric out of the ‘dry’ cabin! Another modification is the positioning of the water maker, which has also been moved to a separate locker accessible from the outside. The aft cabin itself houses the electrics, fed from three solar panels and a battery supply. This powers everything from the water maker to the radio, the sat phone and chart plotters. The cabin isn’t exactly spacious but it is even long enough even for the lanky lion to have a little stretch in!

The boat is currently living at Burnham-on-Crouch in Essex, where experienced boat surveyor John-Kenneth Habbershaw (www.willmyboatfloat.com) went to see her. He has put together a comprehensive report of the boat after examining it inch by inch. The exterior and fixings, interior cabins, cockpits and lockers, the drop keel, rudder and steering systems have all been scrutinised to the highest degree. In general we are delighted to say that she is in fantastic shape having been pushed so hard across two oceans. There is a small amount of work to be done before we can get her on the water and we are in the process of arranging that within the next fortnight.

She is currently decorated with supporters of her previous challenge, but now becomes a blank canvas for companies or individuals looking to sponsor us. Across the face of the stern cabin will sit the names of our cherished ‘100 Club’ –the generosity of our closest supporters who will be our inspiration and constantly within our sight as we pull this boat towards Antigua. Across the length of the hull is 29ft of blank advertising space. We will be rowing a twice-proven race-winning boat by a crew who are dedicated to winning the 2015 Talisker Whisky Atlantic Challenge. If this is something your company (or someone you know) would be interested in supporting then please get in touch info@atlanticlions.com or download our sponsorship pack.

Find out more about the Atlantic Lions’ attempt to row across the Atlantic Ocean for the MS Trust

The inspiration behind my boxing challenge

2nd April 2015 by laura.percival

After meeting and falling in love with his partner Tarina who has MS nine years ago, John Post wanted to give something back for the support they have received over the years. He has signed up for a sponsored Zero to Hero White Collar Boxing challenge and has 10 weeks to get fit, learn to box and then perform in a full contact event in an arena. Here he tells us more about the inspiration behind his challenge.

John Post

I met my long term partner Tarina nine years ago in hospital, she was recovering from an MS relapse and learning to walk again. I was a patient myself with an undiagnosed problem that left my legs like dead weights, a problem that I have not had again since I recovered. It was a very scary time for me as it occurred overnight, but every cloud has a silver lining.

Tarina was incredible. Despite everything she was still smiling and wheeling herself ward to ward for a chat when she was able to. She really helped me get through a tough time, as well as others. It didn’t hurt that she was gorgeous, truth be told I fell in love with her straight away. It wasn’t just her looks, she was everything I ever wanted in a woman – intelligent, funny and strong. I knew she would always challenge me and I would always want to make her happy. What more can any man want?

We became good friends and over time we became a couple and I have never been happier. While I have not had any problems since, the same cannot be said for my partner. It has been difficult at times and anyone who has experience of MS will know that it’s so unpredictable how you will be on any given day.

Striking a balance

As a partner it is difficult to strike a balance that’s supportive but not smothering, to be understanding but strong. For me the biggest thing was knowledge of what to expect and how to find this balance. I have gained a lot of knowledge through the MS Trust among other sources, like many I have learnt along the way.

Let’s face it, no one wants to be reminded of something difficult in their lives every day and constantly talk about it, especially when it’s with your partner as it can really strain a relationship from both sides. The need to gain knowledge and talk still needs to be fulfilled but a third party is the right option sometimes. Whatever your problems may be you need to enjoy your life and not constantly dwell on them, no prizes for guessing who taught me that one!

Giving something back

I never really got fit again after my time in hospital so this is a big challenge for me personally, which is the bit that is selfish in some respects. I have wanted to do something for a long time to give something back for the help we have had over the years. Now I have the capacity to do more I intend to.

I felt this was an appropriate event to do as it requires me to build and maintain both physical and mental strength and stamina, and fight my own body and mind into submission to do what I need it to even when it hurts (and it will). This is but a few months for me, but it is something I believe symbolizes what people with MS do every day and it is truly amazing.

While those of us who care about, live with or support anyone with MS will never truly understand how they feel, and I do not presume to, it’s important that we never stop listening, learning, trying and most importantly loving.

We all do charitable things in our own way and have different means to do so, even if every person who reads this donates a pound it will soon mount up and help ensure this support remains available and research continues. Please don’t let me dissuade you if you are able to be or feel more generous.

Thank you for taking the time to read this article and for your support, monetary or otherwise, as I am sure you will all wish me the best.

Visit John’s online fundraising page where you can make a donation

Running the Greater Manchester Marathon for Emma

23rd March 2015 by laura.percival

Teressa Longhurst

Teressa Longhurst (pictured right) will be running the ASICS Greater Manchester Marathon on 19 April in memory of her friend Emma Farley who had multiple sclerosis. Here she tells us why she is taking on this challenge and raising money for the MS Trust.

As a general rule I do these events for a bit of fun but having recently lost a very caring friend Emma, I wanted to run the marathon in her memory and raise money to help other people who have this awful disease. It’s been a few years since I last ran a whole marathon (2010 to be exact) and I am very nervous about running this one.

It’s been a physical struggle as I’ve had a few injuries that have set me back and I no longer run the kind of distances I used to run. However I am looking forward to race day even though I am feeling unprepared, but knowing that I am doing it for Emma will help get me around.

Emma was a very kind person who always tried to help people, even when she was poorly herself. She was much loved and taken from her family far too soon. Emma and I shared a love of animals, which is one of the reasons why supporting the MS Trust was important to me. They do so much good work and do not support or fund animal testing.

The MS Trust vision is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. They work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.

It will be a great honour to be able to complete the marathon for Emma and other people who have multiple sclerosis.

Visit Teressa’s online fundraising page

Monster Ski in Chamonix: a truly humbling experience

20th March 2015 by laura.percival

Snowboarder Ben Rogers and his friend Phil Draper signed up for our 2015 Monster Ski challenge because they believe that ‘life’s a game to be played, life’s a challenge to be met and life’s an opportunity to be captured’. Here Ben shares his experience of snowboarding 90,000 vertical feet in Chamonix to raise funds to support people living with MS.

Monster Ski group

Months of excitement and anticipation had brought us to this moment. It was Friday morning at Heathrow airport and we were all meeting for the first time ready for the Monster Ski Challenge. Before we knew it we were checked in and heading towards our destination, Geneva airport.

We arrived in Geneva greeted by glorious sunshine and ready for our expedition. Drew, the driver of our airport transfer van, took us through picture perfect scenery in the French valley and then the imposing snow topped mountains appeared.

We reached Chamonix at 2pm and had plenty of down time to unwind and get to know the area. The views were amazing, however the -20 wind chill was a stark shock from the mild temperatures in the valley!

In the evening we were briefed on the challenge ahead. We all met at 6pm for welcome drinks at the hotel bar, introduced ourselves to each other, then listened to the briefing from the ESF instructors. Afterwards, we enjoyed an evening meal and had an early night ready for the challenge the next day.

The Monster Ski challenge begins in Les Houches

Day one of the challenge had arrived and a big breakfast was in order to fuel us up ready for the day ahead! At 8:40am we met at the bus stop and made our way to Les Houches. The instructors took us straight up the Télécabine du Prarion, where we got our ski legs and were split into two groups.

Tom Humpage, a professional photographer, also joined us for the morning. However, he had such a great time he stayed with us for the whole day! He took some great photos of the group, he’s a really talented photographer and snowboarder!

Monster Ski selfie

We made ten full descents of the mountain to reach our 30,000ft target for the day, mainly skiing the black Kandahar piste – a fast tree lined run through the forest at the base of Mont Blanc. The day started with firm pistes until the afternoon when conditions had become slushy making the descent much more of a challenge!

We stopped for lunch after eight descents at a picturesque restaurant with stunning views of the mountains, including the glorious imposing Mont Blanc. We met with the other Monster Skiers for a quick pit stop, refuelling for the final two descents of the day, and completed the day’s challenge at around 4pm.

Day two and another 30,000 vertical feet

Day two started again at 8:40am at the bus stop and we decided to return to Les Houches. It was another nice day, but a bit cooler and cloudier giving us much better ski conditions than the previous morning. We made the most of the conditions and rode hard in the morning to try and beat the afternoon slush!

After lunch we made our way to the other side of the mountain, St Gervais before heading back to Les Houches for the final descent of the day which was very slushy, but was also great fun jumping over the mounds of snow that had accumulated.

Heading to Les Grands Montets for the final day

The final day of the challenge arrived. We met at the bus stop and decided to head to the notorious Les Grands Montets to make our final 30,000ft decent. It was very windy and overcast in Chamonix and we were quite apprehensive as to what the conditions would be like up the mountain. The ski bus was extremely crowded and it seemed like quite a long journey heading up the windy roads!

We arrived and took the Plan Joran and Bochard gondolas up to just under 3,000 metres where it was lightly snowing and pretty windy too. Visibility reduced throughout the day and the snowfall become heavier until we reached the mid station where it brightened up a little.

In a chair lift

We made six descents to reach the 30,000ft target, five before lunch and one in the afternoon. After having our final lunch together on the mountain we made our final run to complete our three day challenge. We regrouped at the bottom of the Grands Montets and thanked the instructors, Beatrice and Manu for their excellent guidance.

The Monster Ski awards!

In the evening we met at Bar’d Up for a presentation by Russell Hardy, Monster Skier and former Chair of Trustees at the MS Trust, where we were all given an award.

The ‘Burning the wick at both ends’ award was handed to Matt as he was able to stay out all night and ski hard all day. Robbie won the ‘King of speed’ award for reaching a top speed of over 68mph. ‘Mr Calm’ award went to Max for his calm approach despite not having skied for a number of years.

‘Father figure of the trip’ went to David, who could always be relied on for his level headed decisions. ‘Funny guy award’ was given to Neil – he had a great sense of humour and kept everyone smiling. ‘King of the mountain’ went to Mark who was never phased and skied hard all day long!

The ‘Beer monster’ award went to Joff, who also carried round a handy hip flask always full of marmalade vodka. ‘Mother of the slope’ went to Emma who was always looking out for everyone and making sure everyone was OK. The ‘Queen of organisation’ award went to Vicky from Ski Independence – without her planning the trip would not have gone as smoothly as it did.

The ‘Loudest snorer’ award went to Les – as a result of his snoring we ended up with a lodger in our room (Sorry Les!). The ‘Cool guy’ award went to Phil – no matter how hard the going got he was always smiling at the bottom of the slope. The ‘Inspirational person of the trip’ went to Ben H, for shredding hard and completing the challenge, showing great determination to not let MS hold him back (legend!).

Monster Skiers having dinner

‘My hotel is better than yours’ award went to Mark G who had booked his own accommodation – we realised he did have a point though when he showed us how good his hotel’s menu was! The ‘Technology’ award went to me, probably because I constantly had a GoPro camera stuck to my head! Recognition also goes out to Russell who is a great ambassador for the MS Trust (and a great skier!)

We then went to La Boccalette for our final evening meal together and congratulated each other before a few final well eared beers in the bar to complete our trip!

A truly humbling experience

For me the whole experience of fundraising, learning about MS and meeting people who suffer in various ways has been a truly humbling experience and will stay with me for the rest of my life.

Thank you to everyone who helped organise this amazing event and congratulations to everyone who participated for your fantastic achievements.

Here is a link to a short video of our trip and to those of you who are thinking of taking on the Monster Ski challenge in the future, DO IT!

Until next time…

Visit Ben and Phil’s online fundraising page

Find out more about the MS Trust’s Monster Ski challenge