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Why are we campaigning for specialist MS care?

23rd February 2015 by Stephen

There are over 100,000 people living with MS in the UK today. But MS Trust research shows that there is a shortage of MS specialist nurses and an urgent need to raise the profile of the physiotherapists and occupational therapists with special expertise in MS. Amy Bowen, Director of Service Development at the MS Trust, explains why we’re working to put MS specialists at the heart of MS care and why we need your support

MS nurse with patient and heart of MS care logoPeople with MS are most often diagnosed in their 20s and 30s. In fact, MS is now the most common neurological condition affecting young adults. So MS really is a lifelong condition. If you have MS you may have to make some big adjustments, manage a range of symptoms, make difficult decisions about treatments and face an unpredictable future.

Despite the number of people who are living with MS, understanding of the condition among health professionals is still often limited. Many health professionals will not have had much experience of MS and don’t have the up-to-date knowledge of the latest developments in MS care. There are new treatments for MS and its symptoms and our understanding of the condition is constantly increasing. This is why MS specialists – neurologists, nurses, and physiotherapists and occupational therapists with special expertise in MS – are vital. They have knowledge and experience to provide the expert, personal support people with MS need, across the range of symptoms, throughout their life with MS.

What’s in a name?

It takes training, knowledge and experience to become a specialist. Not all specialists will have the word in their job title, but the MS Trust works closely with the key professional groups like the UK MS Specialist Nurse Association and the Therapists in MS group to help define what it means to be a specialist. For more than 10 years, we have been providing training programmes for every UK MS specialist nurse as well as for physiotherapists and occupational therapists. This has helped to develop an MS specialist workforce and to help to let us know where are gaps in availability of these specialist roles. National experts work with us to deliver the training programmes in order to make sure that the best possible care is available as widely as possible.

Along with training, the amount of time health professionals spend working with people with MS is also critical. There is no substitute for building up experience in the many symptoms of MS and the treatments, both the drugs and the therapies. Part of what defines a specialist is that bank of experience that they can draw on to provide the right information, advice and care for each person’s unique circumstances.

MS specialist care needs protecting

MS nurse with patient and heart of MS care logoHowever, not everyone with MS in the UK has access to the MS specialist care they need.

MS Trust research has identified a shortage of MS nurses and many of them have caseloads that are more than twice the number that is practical or sustainable. Physiotherapists and occupational therapists with special expertise in MS are in limited supply and our research has shown that there is an urgent need to highlight the importance of their value. Managers and commissioners in a cash-strapped NHS need to know that the knowledge and experience of MS specialists can have a huge impact on the lives of people with MS and to ensure that there are enough of these specialist health professionals to meet the needs of their local community.

For people with MS, access to MS specialists means having support to feel in control of the many symptoms of MS. It means being prepared for potential problems or changes and knowing how to prevent crises. It means being able to receive the expert support to recover from set-backs and to adapt to new circumstances. MS specialists have the knowledge and experience to help with staying in work, staying active and making choices about care and treatment that suit each person’s unique circumstances.

Without specialist care, people with MS are missing out

By working to improve access to MS specialists, we can help to ensure that everyone with MS gets more of the care they need. Having enough MS specialists also help raise awareness and improve understanding of MS amongst health professionals who have less experience of MS.

MS specialists don’t work in isolation. As well as being part of specialist teams which include neurologists based in hospitals, they link up with GPs, district nurses and other local services and share their knowledge and expertise to help coordinate and improve the whole experience of MS care. This all helps to avoid emergencies and reduce the need for already over-stretched A&E departments.

We need MS specialists at the heart of MS care

The MS Trust is committed to making sure that everyone ukaffected by MS can get the best possible care. But we need your help to continue our work.

Showing the difference MS specialists make for people with MS

Through our innovative national GEMSS programme, we’re working with MS specialists and developing new tools to help them show managers and commissioners how they offer the best, most effective care for people living with MS. As part of GEMSS, we are running a national survey service and are gathering the views of thousands of people with MS about how specialist care makes a difference to them. By supporting our campaign, you’re helping us to make the case for specialist MS care.

Training and supporting MS specialists to provide the best possible care

We train every new MS specialist nurse in the UK, making sure they can deliver the best possible care for everyone affected by MS and we offer a full range of training and support for physiotherapists and occupational therapists to gain expertise in MS. We also provide additional training as well as support and resources to make make sure all MS specialists stay up to date with the latest developments. By supporting our campaign, you can make sure we can continue this work.

Changing national guidance

We are disappointed that the new national Guideline for MS doesn’t go far enough in highlighting the importance of MS specialists. We want NICE, the national body that provides guidance to improve health and social care, to recognise the importance of MS specialist nurses as well as physiotherapists and occupational therapists with special expertise in MS. We want to raise the profile of these roles, help build the evidence for their value and to get NICE to acknowledge the difference that their services make. By signing up to our campaign, you’re adding your voice to this call.

 

5 reasons why we need MS specialists at the heart of MS care

23rd February 2015 by Stephen

  1. MS specialists understand how MS affects everyone differently
    On average, a GP in England is likely to see around three people with MS. On average an MS specialist nurse cares for over 300 people with MS, while physiotherapists and occupational therapists with special expertise have vast clinical experience and knowledge of MS. This means they understand the different types of MS and the different ways it can affect people, and this means they know how to to provide the best possible care.
  2. MS specialists understand the physical and psychological symptoms of MS
    Because MS nurses and therapists receive specialist training from the MS Trust, they are specialists on the various symptoms of MS, from difficulties you might have with thinking to issues that might affect your walking. And they can tell you which symptoms are MS-related and which are not.
  3. MS specialists have strong links with local neurology departments
    MS specialists are in regular contact with neurology departments, and can be the best people to help you if you need urgent attention from your neurologist.
  4. MS specialists are aware of all the latest treatments and therapies
    The world of MS care is changing and over the last few years several new drugs and treatments have become available. Because they receive training and regular updates from the MS Trust, MS specialists are the best people to help you understand what treatments might work for you and how you might access them.
  5. MS specialists see the whole person rather than just the symptoms
    Because they have such wide experience, MS specialists know how MS might affect every aspect of your life: your home life, your work and your education. And they know when to ask about symptoms that you may not even consider part of your MS.

Stem cells and MS: where are we now?

23rd February 2015 by Stephen

stem-cells-scientistWe’ve all heard stories about miracle cures for MS; these days they often involve stem cells. Neil Scolding is the Burden Professor and Director of the Bristol Institute of Clinical Neurosciences, and he has a special interest in MS and cell therapy. He’s also a trustee of the MS Trust and is leading research we’ve helped fund into bone marrow cell therapy. We asked him to explain the significance of the latest research and help sort the hope from the hype

Every now and then we still hear or read stories of miracle cures from stem cells – a man reported to have walked again when his severe spinal cord injury was treated with stem cells from his nose. Or dogs cured of their spinal disease with stem cell therapies.

We all know that newspapers need to sell copies, and that “scientists quietly optimistic of a small, incremental advance” makes a boring headline. So all of us try, when we see these things, to be at least a little cautious. But the plain fact is that, mostly, each of these stories does represent progress, a further step forward, sometimes small, sometimes large. They are good news.

So where do all these steps lead? What progress has there been, and how close are stem cell therapies to being routinely available and used in the clinic?
The short answer is: it’s complicated! And it’s complicated because MS is so complicated.

Three types of cell therapy

What has changed in recent years is that stem cell therapy in MS is now thought of in three quite different ways:

  • as a cell replacement strategy, to restore damaged oligodendrocytes – the cells that make myelin – in the brain and spinal cord
  • as a way of replacing the body’s immune system, in order to prevent future inflammation in the brain and spinal cord
  • as a repair and protection strategy, using complex additional properties of some stem cells, both to limit nervous tissue damage and to promote its regeneration

These three approaches have different aims, and can use different types of stem cells. Partly because of this, many of us now prefer the term cell therapy to stem cell therapy. The strategies are at different stages of development, some nearer, some further from the clinic. But they are all important.

Turning research into treatment

The UK has a strong claim to be leading the world in all three of these approaches. But how and when do we turn research into treatments? Again, this differs for the three approaches.
Cell replacement strategies were probably the first to be thought of, but have faced the most difficult challenges in clinical development. There are challenges in:

  • dentifying safe sources of cells and placing them safely in the areas where they’re most needed – inside the brain and the spinal cord
  • and, in particular, being certain they carry no hazards, such as tumour formation

They therefore remain furthest from routine clinical use: there have not yet been any published clinical trials of this approach.

By contrast, bone marrow stem cell transplants to replace the body’s immune system are at an advanced stage. Taking advantage of the technical and clinical progress made by haematologist colleagues, clinicians in Europe, the US and the UK have completed large scale clinical trials in several hundreds of people with MS. While still hardly a routine treatment, we have an increasing understanding of the potential benefits – and the clinical risks – of this approach.

The third way of MS cell therapy, harnessing the protective and regenerative properties of stem cells, lies somewhere between these two in its development, with some small scale trials completed, and larger ones just getting underway.

Hope for people with progressive MS?

Our work in Bristol has largely concentrated on this third way. Some researchers use cells present in fatty tissue, others from other tissue, but we use cells from the bone marrow. Bone marrow stem cells are complex. We tend to concentrate mostly not on those bone marrow cells that generate the blood and immune systems, but on other, smaller populations of cells. We conduct laboratory research studying their properties, and clinical work. A few years ago we conducted one of the first trials in the world of this approach – a very small phase 1 trial to confirm their safety and the feasibility of this strategy.

Thanks to funding from the MS Trust, we are now conducting one of the first phase 2 trials using this approach, the ACTiMuS trial. Over the next few years we hope to begin to provide answers as to whether this will genuinely make a difference to people with MS.

Hope vs hype

While these treatments remain in their relatively early stages of clinical trial and development, it can be very tempting to imagine that the proof is already there (it isn’t), and that commercial outfits, advertising and selling ‘therapies’, usually in countries with a less robust regulatory system, are the answer (they aren’t).

Most forms of stem cell therapy in MS remain unproven: the hazards are not fully understood and some unscrupulous people are making a profit out of the hopes of people with MS.
Nevertheless cell therapy is one of the more promising areas of MS research and there is great work being done in this area in the UK. Whether you are interested in cell therapy or any other potential treatment for MS it’s important to make sure you consult reliable, evidence-based, information. See the box on the right for details about how you can make sure you consult MS information you can trust.


How can I tell good research from hype?

Although health stories always attract a great deal of media interest, not all of these reports are accurate accounts of what the studies have found. Some other reports may also sound convincing but they may just be opinion, or someone’s personal experience, presented as if they were facts that would apply to everyone.

The most important thing is to consult reliable, evidence-based information, for example, on the MS Trust website. If there has been a breakthough in a particular area of research, we will be reporting on it. If we haven’t reported on it, or have a different take on the research, then consider what is being said very carefully.

You can undertake your own analysis of a media story by asking yourself these questions:

  • Does the article content contain evidence and data that match the claim in the headline?
  • How many people did the research study include? Did it include a control group for comparisons too?
  • Was the research in humans? This will give you a clue as to how advanced the research is. If the study was in petri dishes or animals, this means the treatments are much further away from being available in the clinic and may not even work in humans.
  • Is it published in a scientific journal? Or is the article based on a presentation or an interview? Work published in journals goes through a rigorous review process from other experts in the area, in a presentation or interview the person can say whatever they like.
  • Who is conducting the study? Is it research to help develop a treatment or does the study appear to be marketing? You should be very wary of any research or trial in which participants are expected to pay for their own treatment.

If you would like to know more about anything related to MS, contact the MS Trust information team and we can help you find out more. Call us on 0800 03203839 or email infoteam@mstrust.org.uk

This article is part of the March 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

Why we’re rowing the Atlantic for Uncle Gary and the MS Trust

23rd February 2015 by Stephen

Dave, Charlie, Matt and Joe: the Atlantic LionsDavid Middleton and his friends Charlie, Joe and Matt (right) are the Atlantic Lions. Together they have entered the 2015 Talisker Whisky Atlantic Challenge, which will see them row across the Atlantic Ocean. By doing so, the Lions hope to raise £100,000 to support the work of the MS Trust. David explains why they’ve set themselves this huge challenge

Next December, me and three friends are competing in a 3,000 mile rowing race across the Atlantic Ocean, starting in the Canary Islands and finishing in the Caribbean. More people have been into space or climbed Everest than have completed this challenge. It is one of the ultimate tests of human determination, as rowers endure months of sleep deprivation, extreme physical pain and face huge mental barriers.

Inspiration

Our inspiration for taking on the Atlantic with just our arms and oars comes from my Uncle Gary. He was a man who lived his dream by spending his days climbing the Scottish Highlands. Gary moved up to Ballachulish when he was 25. He worked as an engineer at the Glencoe ski centre and also volunteered for the Glencoe mountain rescue team.

Gary’s life was anything but perfect in terms of financial stability, but he was a rich man when it came to the happiness he got from the mountains of Scotland. One day while on a rescue mission on a Munro near the Aonach Eagach ridge, Gary started feeling dizzy but he carried on and completed his mission.

However, this dizzy feeling and lack of balance progressively got worse and so he finally went to the doctor. He was diagnosed with multiple sclerosis and his outdoor life in the Scottish
Highlands came to a shocking halt. For someone as active and free-spirited as Gary this was truly heart breaking.

As Gary’s health continued to deteriorate he moved south to be closer to his mother and father. Sadly, over time, the illness got progressively worse and in 2008 he was told that there was not much time left. At this point Gary and his devoted wife decided to move back to the mountains, back to the place he cherished more than anything in the world.

Achieving something incredible

Gary died in May 2009 and is buried by Loch Leven next to Glencoe. He was a man who lived his life one day at a time, only working enough to survive and to have enough money to enjoy the Highlands. In my eyes he is a hero because, in this day and age, people forget to follow their dreams, to take a moment and think and to enjoy life. My dream is to row across the Atlantic Ocean next year, and, in doing so, my team and I want to inspire more people to live their dreams, just as Gary did.

The Atlantic Lions is more than just a team of four friends competing in a rowing challenge. We want to reach out to communities, families, friends and businesses, to take them on our journey, to achieve something incredible and to give as much as possible to the MS Trust, a charity so crucial to so many people.


In order for the Lions to complete their challenge, they first have to reach the start line of the race, which is a challenge in itself.

Charity fundraising aside, they need to raise around £90,000 in sponsorship to help cover their equipment and entry fees. They are looking for individuals and businesses to partner with and they have lots of fantastic sponsorship opportunities available.

For £1,000 you could even sponsor an oar, which you get to keep after the race! Please get in touch if you think you may have any contacts that would like to get involved with our Atlantic Lions team.

Find out more at atlanticlions.com or follow them on twitter @atlantic_lions


This article is part of the March 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

15 minutes with MS campaigner Emma Rogan

23rd February 2015 by Stephen

Emma RoganEmma Rogan was diagnosed with MS in 2007 and since then has worked tirelessly to raise awareness of the issues that affect people with MS. In 2012 she entered the Vodafone World of Difference competition and worked with MS Ireland on advocacy, policy and information. She now works for the European MS Platform, and is leading their Believe and Achieve campaign, creating paid internship opportunities for young people with MS through partnerships with businesses across Europe

What was the biggest thing you learned from winning the World of Difference competition?

It is hard to do justice to such a life-changing experience! I had the chance to work for the charity of my choice for one year, with salary, training and media opportunities. The value of routine and being back at work were things I hadn’t realised were so important to me. That year positively altered my life path. Winning World of Difference was a chance to make more of who I was, to re-awaken my self-belief, re-establish my career and be the best of myself. In turn, I want to show people that life does go on after diagnosis with a chronic illness.

What do you hope to achieve with Believe and Achieve?

We want to break the notion that, once diagnosed, people with MS don’t or can’t work. I want us to revolutionise the work environment so people with MS, and with other conditions, can continue to work or start in jobs where they stay on their career path, fulfill their ambitions and meet their financial needs.

What needs to change?

We need a unified approach from all government departments and organisations because it’s about helping people flourish in their workplaces and communities. We need local employment advisors who understand the fluctuating nature of MS symptoms and we need more information for businesses so they hold onto valuable employees. In the workplace, we need options to negotiate flexible hours and accessible workplaces. We also need quality work that matches people’s skills. MS doesn’t take away a person’s ability but there may be changes that have to happen to live a full, successful life. It is this ability that the Believe and Achieve programme wants to nurture.

What can people with MS do?

The MS Trust and other organisations provide useful, practical information about work and MS. We have to use it. Ask for support and, if you’re working, speak with your employer or social worker and make a point of preparing for change. The latest research suggests that people who disclose their diagnosis to their employers are more likely to stay in work. So if you want to remain in work and you have the capacity, give your employers the information they need. If you’re looking for work, you may need some help with your confidence to focus on the skills and experience that will get you hired. For employers, there are ways for you to ensure people are supported to stay in work. MS may be part of your existence but it is your ability to work that employers are interested in.

You blogged at the start of last year about writing a list of what you wanted to achieve in 2014 – how successful were you?

My writing output has been low so that will go back on my list! I’ve been using mindfulness meditation daily and making use of some brilliant apps such as Take Ten and Digipill for when I take my daily rest, Black Rainbow and chatting with folks on Twitter for motivation. For me, the point of any New Year’s resolution is to hope for what might be, peace of mind and celebrating life as it is.

What’s your top tip for sticking to those plans and resolutions?

Live in the present but do go back and check your list. Discipline and focus are vital, but for anything to work you have to enjoy yourself. I’ll be celebrating the wonder of life when I welcome a new family member in May; my partner Cathy is pregnant and we’re expecting our first child. Life is so much more than I ever hoped it would be. Dare to dream but allow yourself to let things go. You are in control of your thoughts so talk kindly to yourself. Join me on Twitter for a chat sometime. I’m @emmadragon


To find out more about Believe and Achieve and to see the latest vacancies visit emsp.org/projects/believe-and-achieve
To find out more about your work options if you have MS visit mstrust.org.uk/work

This article is part of the March 2015 issue of Open Door, the MS Trust’s quarterly newsletter.

John Shuttleworth answers the MS Trust’s questions

20th February 2015 by Stephen

John Shuttleworth comes to LondonWe’re delighted that Sheffield-based singer-organist John Shuttleworth is hosting a special performance in aid of the MS Trust at the London Palladium on 28 June, with special guests Chas and Dave, Toyah, Martyn Ware, Gordon Giltrap, and others to be announced. John very kindly took some time out from his busy schedule to answer a few of our questions.

Congratulations on playing the Palladium. Would you say this was the pinnacle of your show business career?

Well, it would have been if it wasn’t for the fact that I’ll be receiving no petrol money (I normally do, you see, in a little brown envelope) on account of it being a charity gig. I’m a bit cross about that, but I guess there’s nothing I can do.

The Palladium is currently home to a production of Cats. Will Kirsty the scottie dog be coming down?

I don’t think that’s very wise under the circumstances, do you? Even if she doesn’t chase after the cats, Sooty and Sweep are now booked to appear, and Kirsty might mistake them for one of her toys. Oof, perish the thought!

Do you think you might invest in a new pair of slacks for the occasion or would that be foolhardy?

Are you suggesting my current slacks are not up to the job? Mary’s just bought me a new pair, as it happens, from an online catalogue. We did it together, with me operating the mouse – very exciting!

Is this your version of Sunday Night At the Palladium? Will you be modelling your hosting style on Brucie or Tarby?

It IS my version, though Ken foolishly stuck a K in front of “night” so everyone will looking for a titled gentleman in the audience. (Mind you, that could be me after this show!) I prefer the more languid style of Dale Winton to that of Brucie – too energetic, and Tarby – too smiley, revealing that funny gap in his teeth.

Do you think this might lead to an invite to appear at the Royal Variety Performance? Would you like to perform for royalty?  

Hopefully so. I am expecting the Queen to be present in the Royal Box at my show. Put it this way, I’ve not heard she can’t make it so must assume she’s coming.

The DooleysIs there any truth to the rumour that Royal Box has already been nabbed by the bass player from the Dooleys?

What?! This is the first I’ve heard about it. Thanks for letting me know. I shall investigate immediately.

Have you planned your route down from Sheffield? Do you have a Tomtom to aid your navigation? What are you driving these days?

I’m still driving my Austin Ambassador. Y reg – because it happens to be that year! I use a road map thank you, and I really don’t see how a noisy drum will help me find the theatre!

You famously find Londoners rather haughty. Is this still the case? Do you think you will go out for a preshow meal (there’s an Angus Steakhouse nearby), or will Mary prepare a packed supper?

I hope Mary will make this one – if it doesn’t clash with step class, or a taster session for the Sheffield Ladies rock choir, which Mary wants to join. A steakhouse sounds lovely. Not somewhere too trendy, or I might be forced to eat Peter’s bread and humus – Oof, that’s dirty!

Chas and DaveYou have a glittering array of guest stars, including Chas and Dave. Chas did a lovely performance on your Radio 4 show last year. Do you think you might return the favour with a cover of “Snooker Loopy”?

“Snooker loopy, nuts are we!” Oo, I do hope so, I love that one. ” Rabbit, Rabbit” is a bit too quick for me.

Toyah Wilcox is also appearing. Toyah is of course one half of a show business power couple with partner Robert Fripp. How would you feel if Mary decided to take to the stage? Would it cause problems in the Shuttleworth household?

ToyahNot at all. As I’ve already stated, Mary wants to join the rock choir, but it’s her friend, Joan Chitty who’s the really keen one. Mary would want to just stand at the back, but Joan would be at the front punching the air and causing a nuisance, so perhaps it’s not such a good idea.

We’re delighted that you are performing for “petrol money only” and proceeds from your Palladium show will go to the MS Trust and the MS Centre in Sheffield. Is charity work important to you?

I do like doing charity work – and you’ve failed to mention the Fun Swim to raise money to buy a new water heater for a gents’ hostel (actually it was just a new element). Unfortunately, I got the wrong day, and arrived during a public session. Hang on… I’m getting petrol money, did you say? Really? Well, that’s fantastic news. I’m suddenly looking forward to the show at the Palladium. Yippee!


Where: The London Palladium, Argyll Street, London W1F 7TF
When: Sunday 28 June 2015 at 7:30PM
Tickets: £30.00 plus booking fee

Tickets for ‘A Knight at the Palladium’ are available online from reallyusefultheatres.co.uk or gigantic.com or by phoning 0844 412 4655

Running in memory of Janet

10th February 2015 by laura.percival

Team of runners in MS Trust T-shirts

Kelvin Bird tells us why he and group of his friends have decided to raise money for the MS Trust by running 10 miles from Hungerford to Newbury.

On the 16th of October 2013 Janet Ricca sadly passed away following a long battle against multiple sclerosis. She was a loving caring person who always loved a game of Bingo on a Friday night. Family was always her thing, no matter how bad she got she always had a smile on her face which would light up the room and make everyone else smile. She was such a strong person who would fight with such courage and determination. I am so proud to have known someone like her and she is sadly missed by all her friends and family.

In honour of Janet Ricca I have decided to do another fundraising run so I have organised one on the 29th of March 2015. I am going to raise money for the Multiple Sclerosis Trust by doing a 10 mile run from Hungerford to Newbury. I promise with all my heart that I will be strong and complete the run. In November 2013 we did the same run and raised more than £1,500, so this year we would love to raise more for MS. With the help of Hayden Ricca, Liam Kumar, Edward Bird, Aaron Bone, Gavin Mosdell and David Fisher, I am hoping to raise in the region of £2,500.

Visit the team’s online fundraising page

Climbing a mountain for MS

30th January 2015 by laura.percival

Jo Fielder

After multiple sclerosis almost took away her ability to walk last year, Jo Fielder has now set herself the challenge of climbing Mount Snowdon. And she wants to raise at least £2,000 for the MS Trust in the process.

About a year ago, I was diagnosed with multiple sclerosis. I was in a lot of pain, one side of my body had gone almost completely numb, I could hardly walk down the garden let alone up a mountain and I was petrified. This lasted for five months. After a month of respite I had another relapse and was told my MS was rapidly evolving. Mentally, I froze with fear. I was put on a powerful drug therapy which has helped enormously and my MS has largely been in remission for the last four months or so.

Knowledge is power apparently but there was little information available to help me understand my condition. Until I found the MS Trust. If I hadn’t found them, I would still be utterly flummoxed by this hugely complicated disease. Me, my friends and family are much better informed thanks to the work that they do.

MS changed my life, almost overnight. I had to give up my career, learn to cope with a whole range of weird and wonderful symptoms and completely change my outlook on life. I have a drip fed drug infusion every month to keep me on the straight and narrow and that is really starting to have some effect.

Over the past year however, my legs have developed an intermittent fault. Some days they’re completely fine, other days they feel like they’re filled with concrete and won’t work properly. They don’t feel like my legs anymore even though they look the same. This scares the living daylights out of me so I have decided to make the most of them while I can! They may never get any worse but who knows what tomorrow brings – I certainly don’t! I just feel very lucky to still be mobile when so many other MSers that I meet no longer have that luxury.

Climbing Snowdon might not sound like a huge challenge to a lot of you but I remember the days last year when a trip to the washing line looked like a marathon – trust me, this is a huge deal! I just hope that May 16th is a ‘good day’!

Find out more and sponsor Jo on her Justgiving page

Food and Fatigue

29th January 2015 by helena.jidborg

Cooking and fatigue doesn’t always go hand in hand, finding both time and energy to cook isn’t easy. Tim Jones has recently started a blog called Food and Fatigue tackling the subject of cooking when your fatigue is bad. We asked Tim to share his ideas and tips of making cooking a bit easier.

I’m Tim, I’m 34 I’m married to Chrissy and we have a daughter Hannah who’s six. I’m really young to be retired but I was offered medical retirement from the Civil Service after a twelve year career as my MS had got so bad. 16-20 hours a day in bed doesn’t go with work, neither does a failing memory!

Tim_Jones

I love cooking. The whole process, I’ve been excited by it from being a teenager having my mum teaching me to cook so I wouldn’t starve at University, to working as a chef in a pub kitchen when I was a student to just cooking good family food for years and years. However, as someone who uses a wheelchair all the time and has an EDSS score of seven this isn’t easy.

To manage this, we as a family have some ways that make things easier day to day:

  • We plan what we are going to eat in two week chunks.
  • We shop online: it saves time that we can spend together; saves money by stopping impulse purchases and means shopping is something that is done slowly and someone brings all the stuff straight into the kitchen and I can then put as much away as I can, even if that’s just items for the fridge and freezer.
  • We cook meals that we can freeze portions of. This means that on days when neither Chrissy nor I can cook, we’ve got something quick and easy to eat.
  • I use a perching stool to get me up to counter and cooker, a mini chopper to stop me taking my fingers off and cooking baskets that mean I can lift pasta and potatoes out of boiling water safely. I also have a hand blender the mashes potato too the key thing being any kitchen gadget that makes things safer and uses less of my energy.
  • I try and cook meals over the course of a day, not in one go at the end. That means I get to go back to bed between sessions.

But most importantly it’s about cooking good healthy food. Takeaways creep in every now and then but that’s always the exception. We make basics like cheese, tomato and white sauces that have multiple uses rather than buy them. Home cooked food keeps me in the best possible shape; I can control the amount of sugar and salt in my food. And yes its therapeutic. When you’re a dad who can’t chase their six year old around it hurts, but when Hannah is tucking into a meal I’ve cooked, it lifts me.

You can follow Tim’s blog or on Twitter and Facebook:

Find out more

MS and Diet
Living well with MS
MS and Fatigue

If you enjoy cooking and baking why not do a dinner party or coffee morning for friends and take part in our be Bold in Blue event? In 2014 over 200 people signed up for Be Bold in Blue and raised over £20,000 to help us support everyone affected by MS

NHS England and continence – at last, the potential for some real improvements…

28th January 2015 by alice.hamilton

In a recent blog, Director for Patients with Long-term Conditions at NHS England, launched a new initiative to improve bladder and bowel care for the millions of people across the UK who experience bladder and bowel problems.
Without any fanfare, NHS England has embarked on a programme called ‘Excellence in continence care,’ to ensure that commissioners invest in continence services. Being NHS England, they want to do this for financial reasons as much as improving people’s health, but still, we can hope for a positive outcome. Dr McShane lists four benefits of improving continence care, most of which benefit the NHS system rather than people. According to Dr McShane, improving continence care will lead to:

  • contributing to independent living and improved quality of life
  • a reduction in admissions to residential or nursing care homes
  • fewer emergency hospital admissions with urinary tract infections, pressure ulcers and catheter related infections
  • reducing prolonged use of incontinence products (eg catheters, pads etc) through interventions such as physiotherapy and medication

Why does this matter? Well, people with MS tell us that bladder and bowel problems are some of the most embarrassing symptoms anyone can develop. A fear of accidents can stop people from going out, from going to work, from trying new things, even from seeing friends and family because life is dominated by being able to get to a nearby toilet.
Unfortunately, in MS bladder problems are some of the most common symptoms, and can include:

  • Urgency – needing to go now with little or no warning
  • Frequency – needing the toilet very often
  • Hesitancy – difficulty in emptying the bladder
  • Retention – a feeling of incomplete bladder emptying

Bowel problems in MS are almost as common. These are thought to affect around half of everyone with MS at some stage, and can be even more difficult to talk about than bladder problems. Common bowel problems in MS include:

  • constipation and problems emptying the bowel;
  • faecal incontinence or lack of control over bowel opening

The good news is that if these problems affect you, the MS Trust may be able to help. Our self-management guides, Managing your bladder and Managing your bowels outline common difficulties caused by these symptoms in MS and what to do about them. Also, one of our most popular resources for nurses and other health professionals is the Practical Guide to bladder and bowel in MS, which takes health professionals through the nuts and bolts of managing common bladder and bowel problems in MS.

All of which is great so far as it goes, but it is even better to see NHS England finally take this issue seriously. Let’s hope that NHS England’s campaign for Excellence in Continence Care leads to lasting improvements in provision of continence services in all localities, so that everyone with MS who needs this help gets it. In the meantime, if any of these symptoms affect you, talk to your MS nurse in the first instance or ask your GP for a referral to your local continence service – in some areas, you can contact these services directly.