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Atlantic Lions Maiden Voyage

18th August 2015 by Guest blogger

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In December 2015 four friends who met at the University of Birmingham are going to attempt to row across the Atlantic in aid of the MS Trust. The Talisker Whisky Atlantic Challenge is a 3,000 mile race from La Gomera, Canary Islands to Antigua in the Caribbean and has been dubbed the ‘toughest rowing race on earth’.

Below you can read their latest blog about the Maiden Voyage they made at the weekend.

For more information on the Atlantic lions have a look at their blog: http://atlanticlions.com/ If you want to support the lads you can donate via: http://uk.virginmoneygiving.com/team/AtlanticLions

ATLANTIC LIONS MAIDEN VOYAGE

This weekend had long been in our diaries as the first ‘proper outing’. We have been out as a crew together on the river, but never more than a couple of hours at a time and although Matt and Charlie had already spent a night on the boat, that was well within the protection of Christchurch harbour! It was with excitement and unnatural early morning enthusiasm that the boys left London at 6am on Saturday morning and made their way down to Christchurch. Over the last few weeks Cris and his team at Rossiter have worked tirelessly to have the boat ready – including fitting a new rudder cassette, rudder line cleats and VHF radio. So enthusiastic were we that we actually had to wait for the Chandlery to open at 9am to buy a few last minute bits and bobs. It did give us time to squeeze in a few bacon and sausage baguettes prior to departure – always a welcome deviation from the plan!

With ration packs aboard and a chipper radio check with Solent coastguard from Joe we were ready to go! We left Christchurch harbour on the turn of the morning tide and made good progress across the Bay. Electrician Dave had set our way points into the GPS and navigated us in an Easterly Direction towards Hurst point. We had also activated our AIS – automatic identification system, which not only allowed us to identify other vessels, but also allowed bigger ships to see us on their screens probably, long before they would see our small 29ft boat bobbing around in the Solent! We actually arrived at Hurst point ahead of schedule and struggled to make it around the point against the outgoing tide. What we learnt very early on was that even rowing with maximum power we were never going to be able to compete against a 6kt current!

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Though slightly heavier than the powder foods, these taste immeasurably better – and actually resemble real food. They are also more calorific which is going to be essential as we try and keep enough energy going in each day to fuel us across the Atlantic. Pasta bolognese and chicken and mushroom pasta were particular favourites – but it was the unassuming rice pudding that really hit the spot! BTBT also provided us with packs of biltong, squeezy peanut butter, squeeze fruit, a range of nuts and some boiled sweets – which were great to keep the salt taste off our tongues but also provided our daily Vitamin C! Thank you to our food sponsor for their support and we look forward to using more in the coming months!

We eventually made it around Hurst point and had our first real taste of waves in the chop between the mainland and the Isle of Wight. We got into a good rowing routine for about 10 miles up the Solent and picked up a temporary mooring just outside Cowes. We knew that we had a solid row ahead and managed to squeeze ourselves into the cabins for a couple of hours downtime. Charlie was banished to the bow suite and the other three got cosy in the aft cabin – not the most spacious arrangement, but something we’ll have to get used to if weather forces us inside during the race. At midnight we set of westwards back down the channel. Safety officer Slug ensured that were were all in lifejackets and harnesses and it was good practice changing over. Rowing in the dark was initially a little unnerving. Although there were lights from channel buoys, it was difficult to see exactly where we were and so we had a system where two rowed, one helmed, and one was constantly on the GPS, checking our position, altering our bearing, looking out for navigation marks etc. This was a new environment for most of the crew but prior planning and adequate caution meant that we did remarkably well to row a safe passage through the channel and follow the Isle of Wight southwest towards the needles.

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It was off the westerly tip of the island that we encountered our most tricky conditions. Wind vs tide created large swells coming across the beam of the boat as we tried to head Northwards back into the bay. Charlie and Matt struggled to make useful strokes, with one oar up and one oar down most of the time – often taking airstrokes and sharing a number of simultaneous curses! Making their way slowly through some of the worst of this chop it was time for Dave and Joe to put in a real shift. Although the waves settled slightly, the north westerly current was relentless and constantly trying to push us off course. The boys battled hard for an hour and made slow but steady progress northwards – despite only travelling about 2nm true distance in 2hrs it was by far the hardest the crew had rowed and made all the more difficult in the dark! Sunrise came as a welcome reward for our efforts and eventually the south coast began to get steadily closer as we made our way back to Christchurch.

All in all this weekend had been a huge success. We had achieved the objectives of our first outing – to be out on the boat for 24 hours as a crew, row through darkness, test some of our equipment, practice navigating between waypoints and eat from ration packs. The route had been testing for it’s own reasons, primarily the strength of the currents and the business of the traffic through the Solent – and there were important lessons learnt from these. Some 40 nautical miles and a few blisters later only puts into perspective the challenge ahead – 3,000 miles across the Atlantic Ocean.

If you would like to find out more on the Atlantic Lions please email fundraising@mstrust.org.uk great sponsorship opportunities are still available.

Could you help people with relapsing MS make the treatment choice that’s right for them?

12th August 2015 by Stephen

This autumn the MS Trust is launching a new, fully updated version of MS Decisions.

ms-decisions-logo-with-MS-Trust-logoMS Decisions is the independent, interactive resource that helps you learn about MS disease modifying drugs, weigh up your treatment options, get more from your discussions with your MS team and make the choice that works for you.

The website was originally launched in 2004, and since then more than 100,000 people have used it to help them choose their treatment option. But in recent years a much wider range of drugs for relapsing remitting MS have become available, so deciding which one is best for you has got much more complicated.

That’s why we’re updating MS Decisions to include all the new treatments, and also making it more user friendly, so you can compare drugs side by side, and weigh up their respective pros and cons.

But we need your help to show why this resource is needed and to reach even more people who might find it useful.

If you were diagnosed with MS in the last five years, and could share your experience of choosing treatment options in this short survey, you could help us help even more people make these decisions in future.

Please fill out our short survey and help us help more people with MS make the choice that works for them.

Find out more about MS Decisions.

A spring in your step

10th August 2015 by Guest blogger

Foot drop, or dropped foot, is a symptom which affects many people with MS. It’s caused by weakness in the ankle or disruption in the nerve pathway between the legs and the brain, which can cause trips and falls. However, it can be treated by using a functional electrical stimulation device, which discharges a small electrical pulse to your nerve to help your foot lift correctly

Dr Paul Taylor

Paul works in the Clinical Science and Engineering department at Salisbury District Hospital, and has led on the research and development of FES.FES

Functional electrical stimulation was first developed in the US in the early 1960s. It was tried with people who had strokes, and although it showed some promising results, the technique failed to get into regular clinical practice. When we started here in Salisbury, FES was seen as a research thing only. It wasn’t in regular clinical use at all.

We started using FES in the mid-1980s. Originally our work was with people with spinal cord injury. We developed a range of techniques to try and help people stand and walk better. And it was from those devices that we developed the devices for multiple sclerosis.

We’ve found it can be very effective. Of course it’s no cure for multiple sclerosis, but the data we’ve collected from the several hundred patients we’ve seen indicates that people’s walking ability improves significantly.

They’re able to walk faster, with less effort. We have reduced trips and falls. We have two studies that show falls reduced by about 72 per cent, so people with foot drop are walking more safely.
People report that they feel a lot more confident when walking. I think it’s a lot to do with the fact that they feel safer, they’re less likely to trip and carers and partners of people with MS, report that they feel more confident in leaving the person they’re caring for without assistance because they know they’re going to be safe.

In our experience FES can help across a whole range of disability. Some people use FES only for longer journeys, if they’re walking long distance. The rest of the time they don’t need the extra help. And there are those that need it all the time. They might only be able to walk 10-20 metres, but that’s enough for them to get around the house, to get to the loo or get from the front door to the car. And it works for everyone in between. It is a technique you can choose to use in different ways and make it work for your own particular problems and lifestyles.

Here at Salisbury we’re really very grateful to the MS Trust and its supporters. The MS Trust funded the first randomised control trials into the use of FES and has really been instrumental in getting it established in MS care.

 

Christine Singleton

Christine is a clinical specialist physiotherapist in Birmingham and has developed services using FES

I first came across FES in 1994. At that time I was working as an outpatient neurophysiotherapist and I had been looking for ways of creating a ‘carry over’ for the treatment that I gave to people with drop foot. So I was very receptive to this idea that something could be used continuously as the patient was walking.

Before FES treating drop foot was was very much about my skills as a neurophysio – hands on, strengthening exercises, posture, alignment, pain management, various orthotic devices, such as splints, if appropriate.

So when I discovered FES and then tried it out and saw almost immediately the benefit it had, it was my duty as a professional to make sure that people had access to it.
With my experience as a clinician, and with the experience of people who used it, we were able to feed back to Paul and his team about the improvements that could make the technology even more easy to use. It was a really effective model.

People took to it straight away because of the difference it made for them. The first person I saw from 20 years ago has only just stopped using the stimulator. In my clinical experience I’ve seen 845 people with MS just for FES. Of those, 327 are currently using FES at the moment. And of those 327, 123 of them are still working, and that’s really important. There is an economic benefit there, as well as everything else.

I’ve recently reviewed one person with MS who has been using FES for eight years. She cannot walk without the FES, but with the stimulation she can walk 10.5 metres a minute. So it’s keeping her independent. She was telling me how good it is to be able to still walk, the benefits for her digestive system, for her breathing, posture. She literally uses it from the moment she wakes up in the morning to the moment she goes to bed at night.

You might say the decision to use FES for MS drop foot appears obvious but we recognise it’s not appropriate for everyone. But it has been a battle for 20 years to get the service to people with MS. On the education front: to actually let people know that it’s available. On the technical front, in the sense that it’s had to develop and improve along the way to suit various needs. And on the funding front, clearly. The biggest barrier for us has been dealing with the constant changes in the NHS.

The use of FES is a great model for holistic care for people with MS. It eventually becomes an annual review: people can manage it themselves, and if they can’t, they have access to the physio team at any time. And because we see them annually, we can also signpost and deal with any other issues that they may have. And through the experience we have, we now know quite a lot about MS.

I would cautiously say that we’re at the tipping point with FES now. It just feels like we’re at the point where they can’t ignore us any longer! We have enough evidence. We have good partnership with the various companies that make the stimulators. People with MS, their health professionals, the MS charities: there’s a good partnership now to push this forward.

 

FES-illustration

Anne Wise

Anne was diagnosed with MS in the late 1980s and started using an FES device last year

I first started experiencing drop foot about 12 years ago. I was finding I was lifting that leg from the hip: my gait was completely wrong. I was tripping over, dragging the foot. Quite often over the door step. My foot just wasn’t lifting. But I only started using FES round about August last year.

I knew about FES because I was on the trial 10 or 11 years ago. It didn’t work for me then. I had been using a splint. But it was very difficult to get it on. I live by myself and I really needed help because flexing the foot to get it into the splint I found difficult. It was very uncomfortable.

Last year my leg was dragging so much more and I felt I ought to do something about it. So I asked my doctor if she would refer me, and she did. The FES device takes a little bit of getting used to, getting it in the right position. But after a while it just comes naturally.

I put it on first thing in the morning and usually it stays on all day. You feel there are sensations but you do get used to those. What difference has it made to me? I can walk much easier. I can walk further. I don’t drag my leg so much. I can do more with it. Stairs are easier. I have always been involved with social things anyway, but it does make it easier yes.

In our local MS group people are very aware of FES. We have a weekly fitness group and there are three of us that use it. One lady particularly has a lot of trouble walking, and if she hasn’t got her FES then she is really lost. Another one wears it most of the time, another wears it occasionally if she knows she’s going to be on her feet a long time.

Would I recommend FES? Oh yes, definitely yes. When I first had it I didn’t wear it all the time. If I was staying indoors all day I didn’t bother to put it on. But I do now. It’s made
a huge difference in keeping me mobile and making sure I can get out and see people.

“Doing nothing carries the biggest risk, in my view”

10th August 2015 by Guest blogger

Eleanor was recently diagnosed with MS and, after conducting personal research and consulting with her health professionals, opted for Lemtrada as her first treatment. She explains how she came to her decision
After I was diagnosed I read everything I could, on everything from DMDs to diet to ingesting worms, before settling on the sites I found the most informative and reliable. I looked at the MS Trust, MS-UK, MS Society and built on this. I read NHS England policies, NICE and ABN guidelines and found these to be useful. Information from the MS Trust helped me make sense of areas I struggled to understand. Bart’s Blog has remained a good source of information on all things MS and there are also a number of social media groups where MSers share treatment experiences.
On the Bart’s MS Blog they have the mantra “time is brain” – that is, that early treatment can improve your long-term outlook. This has stuck with me, and the more I read, the more my resolve strengthened to hit this disease hard and early. I’m aware it remains questionable if any of the current DMDs delay transition to secondary progressive MS, but given most relapses leave some damage and it only takes one to devastate, it made sense to me to reduce these as much as possible.

Eleanor quote-OD

Coming to terms with MS

The research blogs were quite hard to understand initially, and also somewhat daunting as they evidence the hard facts and dark side of MS perhaps more than other sources. I needed to hear it though. I didn’t want sugarcoated advice or snippets of information, I needed information which was direct, full and evidence based to be able to make informed decisions. I still can’t say I fully understand all the terminology all the time but I do have a much better grasp through my research, and because of this feel more confident in managing my MS. Becoming more informed has definitely helped me navigate my way through the system and also in coming to terms with the disease.

My window of opportunity

I’d read relapses are only the tip of the iceberg and, although my health had been stable, I wanted to know if anything was going on I didn’t know about. The “time is brain” theory was always at the back of my mind and I wanted to be as proactive as possible in preserving it. Lemtrada had been approved at this point and was already on my radar. I asked for another MRI and after some discussion this was agreed. The scan show new inflammation and so I actively pushed for Lemtrada. My rationale being: this was my window of opportunity, I’d had breakthrough disease while on interferon and it was only a matter of time before another relapse came my way. The first relapse was severe and it floored me. Lemtrada has risks but I believe these are manageable. MS on the other hand is a very real and significant threat to everything I value. Doing nothing carries the biggest risk in my view.

When I was diagnosed I had a frank conversation with my consultant and while he said Lemtrada wouldn’t be his first choice for me (he suggested orals), I was eligible and he would support and respect my views. I had prepared for the appointment and my decision was an educated one. I am extremely thankful that I have a proactive neurologist who hears me out. While we might not always agree, there is mutual respect and understanding. For the first time I felt hope for the future.

I’ve now had my first treatment, and at the moment I have no symptoms or disability. With many working years ahead of me I hope this continues for a long time to come. It’s been a long road but right now I feel I have everything to live for. Lemtrada may not be a cure, but for now at least I can take comfort knowing I’ve done what I can with the tools available to me. The rest as they say is up to fate.


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

Why we’re launching a new project to ensure more people can access the best possible MS care

10th August 2015 by Guest blogger

MS Forward View aims to define the development and improvement of MS specialist care

The MS Trust welcomes the new guidelines from the Association of British Neurologist for prescribing and monitoring MS DMDs. However, we know that they pose a big challenge for existing MS specialist services

There are over 100,000 people in the UK living with MS. However, we have comparatively low numbers of people with relapsing remitting MS (RRMS) currently taking DMDs. MS Trust research also shows that we have a shortfall of MS specialist neurologists and nurses.

The challenge for MS specialist services is to support the call for earlier and higher levels of treatment for people with RRMS, while ensuring everyone with MS can access specialist care.

That’s why we’re launching MS Forward View. This is a new, one-year project, building on our GEMSS programme, looking at how MS services can make best use of their skills and resources to ensure more people can access the best possible specialist care.

Through MS Forward View we will work with people with MS, health professionals and managers to produce an action plan to improve and measure access to specialist care, and define future standards and education programmes.

During the project we plan to map neurologists and MS specialist nurses in the UK, define the different types of services they offer, look at how they currently prescribe and monitor DMDs and explore ways they could work to help more people with MS, no matter what type they have, access the best possible care.

We’re currently working with project partners on our detailed plans and we will begin mapping existing services this autumn. To find out more about the project and how you could support this work visit mstrust.org.uk/forwardview


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

“I think the proactive approach is very reassuring”

10th August 2015 by Guest blogger

belinda wellerDr Belinda Weller is a consultant neurologist in Edinburgh. She tells us how she first came across the idea of early, proactive treatment, and the difference it’s made to how she works with people with MS

I’ve been working in MS for over 10 years. 10 years ago if someone was diagnosed with MS we followed the guidelines: if you’d had two relapses in two years, you had a choice of one of the interferon injectable treatments. Sometimes I would guide people, but in general I let them make the decision. I didn’t think there was a lot of difference between them. So if people had relapses we didn’t have a lot to do really. We didn’t repeat MRI scans and we kept people on the same treatments.

Treating people proactively

The idea of early treatment was really strengthened for me when I was doing a sabbatical in Australia three years ago. I found that neurologists over there were much more assertive in getting people treated, pretty much at the point of diagnosis.

At that point they were just starting to treat people more proactively because they had Gilenya a little bit ahead of the UK. There still were people on the first line treatments like the injectables, but they also got annual MRI scans. And if people had even one or two new lesions the neurologists would advise people to switch to a more effective treatment.

I can’t say that I saw immediate effects of this approach, because I wasn’t there long enough. But if someone had a relapse you could say, “OK, we can put you on a different treatment which might be more effective”. If you have MS I think that’s very reassuring and encouraging.

I think the proactive approach is very reassuring

New treatments

When I returned to the UK I found people were just starting to talk about proactive and escalating treatment. Because we now had more options, so we could change treatment, rather just switch from one injectable treatment to another. We had Tysabri that you could escalate to, and then a bit later we had Gilenya.

So now if I speak to someone who’s just been diagnosed with MS I say: “We’ve got increasingly effective disease modifying drugs (DMDs) that can keep you from getting any worse. We can’t change things that have already happened, but if we get you onto treatment quickly, our aim is to keep you as well as you are now, indefinitely”.

You still get people who are a bit uncertain about treatments. They’ve heard that they’ve all got bad side effects, or they’re not that effective. So I say to people, “Look, these treatments do make a difference. And there is evidence that treating earlier gives better results. And while you are on your treatment we will try to do regular MRI scans, so we’re checking how your brain is doing, as well as how your doing in our clinical tests”.

How early?

How early should people with MS get treatment? That’s a big question. We’re probably a bit slower in the UK, because not everyone is treated after clinically isolated syndrome (CIS).

Not everyone with CIS will go on to get MS. But I think there are cases where we should be treating from the first symptoms. And I think certainly, with people who’ve had two relapses close together, and you’ve made a diagnosis of MS, they should be offered treatment straight away. And I would prefer to offer it then rather than wait.

I don’t think it’s ever too late to begin taking a DMD, unless you are very obviously in the progressive phase. We know that the DMDs probably aren’t helpful then. But if you are still having relapses I think you will benefit from DMDs and they should be offered to you. And if you’re in the progressive phase you should be considered for trials for treatments for progression.

The future of MS treatment

I think the idea of early, monitored treatment is certainly becoming more popular. If you follow MS research, I think the evidence is increasing. Not just starting treatment early, but being ready to switch treatments, and being aware that you don’t just go on how the person is doing in clinical tests, you should be repeating MRI scans.

And we really should be aiming to suppress relapses but also to suppress MS activity in the brain. I know that’s not always possible but at least you should be aiming for that.

I think we’re now beginning to see the benefit of this approach. This is purely anecdotal, but we’re working on the MS-SMART secondary progressive MS (SPMS) study here in Edinburgh, and I was looking through our database for people to take part. I found that we don’t have that many new people with SPMS coming through. There could be a number of reasons for this, but I am hopeful that by treating people early and effectively we are starting to reduce the number of people who are going into the progressive phase.


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

Where there’s a will…

10th August 2015 by Guest blogger

Vix for MS TrustWhen Vicky Edwards was buying her first property it made her realise how important it was to make a will. As well as ensuring her loved ones were provided for in the event of her death, it was also an opportunity for Vicky to support her favourite charity

In 2010 I went into joint ownership of a lovely bungalow with a close friend. I was 29 and on a low wage and this seemed like the only way to get on to the property ladder. That same year I was diagnosed with multiple sclerosis. I knew nothing about MS and was relieved to be given lots of information by my MS nurse, nearly all of which was from the MS Trust.

With the sale of the property nearing completion I had to go to the solicitors and sign the papers to make it official. While we were there, the solicitor asked us both if our wills were up to date. Wills! I hadn’t thought about doing a will. That question seemed like something so negative during what should have been a happy moment. It wasn’t something that I wanted to think about.

We spoke further about it and I started to realise how important a will is. It had never crossed my mind before what might happen to all my belongings (estate) after I am gone. The solicitor explained to me that if a person dies intestate – without a will – their estate is shared out according to pre-set rules.

It was made clear to me that if I died without a will and there were no surviving close relatives, then my half of the property would pass to the Crown. This would make it incredibly difficult for my friend who owns the other half of the bungalow to be able to take ownership of my part of the property.

We both booked appointments to go back to the solicitor to make our wills. It occurred to me that people don’t generally think about making their wills until later in life. But what if the unthinkable happened? What if something happened to you unexpectedly and you hadn’t made arrangements? The more I thought about it, the happier I was that the solicitor had brought it up and that I had an appointment.One more thing crossed my mind. What would happen to my estate if the people I’d written into my will had also died and I didn’t have any surviving close relatives? I spoke to the solicitor about this at my appointment. She explained that in this case my estate would pass to the Crown or I could nominate it to go to a charity of my choice. She also told me that I could consider leaving a gift in my will to charity – either a specific amount or a percentage of my estate.

I loved the thought of this! I didn’t have to think hard about who the charity would be. The MS Trust has helped me so much since I was diagnosed and I’m sure they will continue to help me for many years to come. That is of course if people like myself continue to support the charity by leaving gifts in their wills.

Remember a charity in your will week 2015

Remember A Charity in your Will Week
7-13 September 2015 is Remember A Charity in your Will Week – an annual awareness week designed to encourage more people to consider leaving a gift to charity when writing a will. Three quarters of people in the UK regularly give to charity in their lifetimes, yet only 7% currently include a charity when writing a will.
Leaving a gift in your will to the MS Trust need not be complicated; in most cases a solicitor will be able to draft a simple will from around £100. Gifts of any size are most gratefully received and you can be sure your gift will be put to good use, enabling us to continue providing practical support to people living with MS.

Putting MS specialists at the heart of MS care

10th August 2015 by Guest blogger

Geraldine Mynors reports on progress in our campaign to make sure everyone affected by MS can access the best possible specialist case

For the past year 11 teams of MS specialist nurses and therapists have taken part in the MS Trust’s GEMSS (Generating Evidence in MS Services) programme. They have been collecting data about the service they offer people with MS, so that we can make the best possible case for the value of their work. Our task now is to bring the data together into evidence which we hope will influence the shape of NHS services to come.

Unique insights

text from heart of MS care blogBetween them the teams have a caseload of about 13,000 people with MS – that’s over 12 per cent of people with MS in England and Scotland. By working with them we’ve gained unique insight into how MS services work on the ground, what makes services most effective, and the challenges of working in different parts of the NHS. We’ve already used GEMSS data to develop a capacity-planning tool for MS specialist nurses, and to publish our recent report MS specialist nursing in the UK: the case for equitable provision.

Over the past two months, the GEMSS teams have analysed their data and written up local reports. The reports provide evidence about what the MS specialist nurse teams do and the value they add, as well as making local recommendations about how their services can be improved and strengthened. Some of the recommendations they have come up with include:

  • delivering more group education courses on topics like symptom management and fatigue management
  • making contact with people who have been out of contact with services for some time
  • improving the efficiency of their outpatient clinics (improving reminder systems so that slots aren’t wasted, for example).

The MS Trust will be supporting teams in taking forward these recommendations. In some cases, the services have well over the MS Trust recommended maximum sustainable caseload of 358 people with MS per MS specialist nurse, and so they are going to use the data that they have collected to make the case for an increase in the number of MS specialist nurses.
We will be using the GEMSS data to create a national report, to be published in November, which will highlight the findings of the GEMSS programme and present the evidence for the value of MS specialist nurses.

Initial findings

One of the tools we developed with the GEMSS teams is a survey of people with MS. The survey was designed inpart to capture the experience and views of people with MS on the value and impact of their MS specialist nurse service. Around 1,250 people responded to the survey and we’re now analysing the overall data. Some of our initial findings are:

  • MS specialist nurses are the profession that people with MS consult about their MS more than any other.
  • Nearly one-fifth of respondents had seen neither an MS specialist nurse nor a neurologist in the past year, and so will not have received the specialist annual review recommended by NICE.
  • People with MS reported a wide range of positive benefits from having an MS specialist nurse. However, around a quarter of respondents said that their MS specialist nurse hadn’t helped them in the past year. 10 of 11 GEMSS teams have than the MS Trust recommended sustainable caseload, so it’s clear that more nurses are needed in places.

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

Considering the risks

10th August 2015 by Guest blogger

When Ema was diagnosed, injectable MS drugs seemed to be keeping symptoms under control. But a severe relapse made her consider more powerful treatments

When I was first diagnosed, not at all comprehending the seriousness of what I was being told, my reaction was quite blasé. Nonchalant. Insouciant. Unlike the approach of so many people more recently diagnosed, I didn’t immediately get online and start researching my options. Well, I bought some flaxseeds and vowed to stop drinking.
Once my first notable relapse was all but over, my first MS nurse (I’ve moved region a few times since it all started), handed me a booklet that outlined the key things you’d need (want?) to know about the injectable DMDs: Avonex, Rebif, Betaferon and Copaxone, and told me to go off and make a choice. The criteria I elected to use for this most important of decisions was: a) how many times do you have to inject every week and b) how long’s the needle? I like to think efficacy and possible side effects were also a consideration but, hey, I was 27! I did not have time for this.

Ema quote- OD

Beginning injections

Injections for Rebif are thrice weekly, sometime followed by pretty nasty ‘flu-like symptoms’, although I was lucky to never suffer these. I was on this for about a year, feeling fine and diligently filling in my Rebif branded injection diary, when a regular blood test revealed I had a low white blood cell count. No worries (I was still pretty casual about the whole chronic illness game), Copaxone it shall be then!
The reason that I didn’t go for this the first time around is because you have to inject every day. Yes, you heard me correctly: every single day. My second MS nurse (I lived somewhere different now) went through site rotation and why that’s so important with me, and then I was off – with a new (this time Copaxone) branded injection diary that I would, again, be filling in diligently. I really didn’t like the daily routine of this particular drug. I found injecting into my arm (the fleshy part near the top) impossible – eventually my husband did it for me – and also really painful. But, the most important thing is, I didn’t have a single relapse whilst on these DMDs.

A devastating relapse

In 2011, I got married. My husband and I decided we might want to start a family and, on my nurse’s advice, I stopped the Copaxone. Two things:
1. we (I) hadn’t really thought seriously enough about the prospect of children, I just really didn’t like the injections and not doing them anymore was great;
2. I wish I hadn’t stopped.
2012. Moved again. No sign of MS – well, apart from an odd sensation, like sand under my skin in my hands. I go to meet my new MS nurse; I tell her how ridiculous I feel saying I have the disease when I’ve been completely fine for five years; I tell her that I think it’s benign; I tell her I’m thinking about coming off medication for good.

Famous last words?
2013. The year of the “devastating” relapse (words of my MS nurse). As this relapse (and I think it was actually three spaced out, the third being the devastating one), slowly began to retreat, the issue of medication was back on the table. My neuro, nurse and family were convinced that Tysabri was the one. I was unsure. I’d heard about PML (or, rather charmingly, progressive multifocal leukoencephalopathy) and I didn’t want to take the risk – still, despite everything, remaining blinkered to the very real long-term risk of further relapses. But I took the JCV test, just to see; obviously I was positive. After thinking, and then thinking some more, veering between yes and no, reading, and rereading any information I could find, I went for it. After the first infusion, I panicked constantly, seeing everything as a possible sign of PML. After the second, I was (maybe) a little calmer. Now, after the eighteenth, I barely think about it at all. Although my absolute and final red line was always drawn under the twenty-fourth. I’m now considering my ongoing treatment options.
If I were diagnosed now? I’d go straight for the hard stuff. Kick MS down before it has the chance to even stand up.

 


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

“If you have MS, you can drive change”

10th August 2015 by Guest blogger

Gavin GiovannoniProfessor Gavin Giovannoni is Chair of Neurology at Barts and The London School of Medicine and Dentistry and is widely credited with popularising the idea of early treatment and treating to target NEDA in MS

When did you first come across the idea of proactive treatment?

The idea is not novel: the same principle is used to treat rheumatoid arthritis and inflammatory bowel disease.

If someone with MS prefers to wait and see, or try lifestyle/diet changes, would you try and persuade them otherwise?

Yes and no. I think people with MS need to understand that MS is not a disease that can be necessarily controlled by lifestyle and diet. There are some people who do well with no treatment, regardless of lifestyle or diet; they may turn out to have benign MS in the future. If you happen to be doing well on a specific diet you might attribute it to your diet, when you would have done well regardless.

However, if you have active MS and don’t want to start a DMD, but would rather try a diet and lifestyle changes, that is fine by me. I tend to negotiate and say that “If we repeat your MRI in six months time and there is evidence that your disease is active (that is, there are new lesions or enhancing lesions) this would indicate that the lifestyle changes and diet are not working. Would you then consider starting a DMD?” Invariably people agree to this. If their disease is inactive at six months we wait and see. And if their disease is active we add in a DMD. The issue is not about DMDs versus lifestyle/diet, it is about the holistic management of MS. I personally think DMDs and lifestyle and diet are complementary to each other.

What can people with MS do if their neurologist doesn’t want to escalate to a more effective treatment?

They can get a second opinion. If you have MS you can drive change: ask pertinent questions of your neurologists and you can change the way you are treated.

What is NEDA?
No evidence of disease activity (NEDA) is a new treatment goal for multiple sclerosis. Its aim is to treat people with MS to reach a point where they are having no relapses, no disability progression and showing no new or enhancing lesions on their MRI scans. It’s based on a treatment approach that has been found to be successful in the treatment of people with cancer and rheumatoid arthritis.
In the past, treatment of people with relapsing MS has focused solely on reducing the number of relapses. However, as Eleanor writes on p14, relapses are now understood to be only the tip of the MS iceberg. There can be other MS activity that is not outwardly visible, such as so called silent lesions that do not cause a relapse or symptoms. NEDA aims to also treat this underlying activity as well as the more apparent activity, to prevent a build-up of permanent damage to nerves.
The concept of NEDA is still evolving and there are many questions still to be answered, including a debate over additional measures that could or should be included. To find out more visit mstrust.org.uk/NEDA

 

Drug effectiveness
In the past, DMDs for relapsing remitting MS have been mainly evaluated in clinical trials on their ability to reduce relapses. A drug’s effectiveness as defined by its ability to reduce relapses in clinical trials is only part of the story. As they each work in a different way to prevent the inflammation caused by MS, their effectiveness can vary by person. A drug that is suitable and effective for one person may not be the right one for another. The key aim of treatment is to help people with MS find the DMD that is effective for their level of MS activity while minimising the risk of serious side effects.

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