August 2013 Open door

Quarterly newsletter of the MS Trust

Open Door August 2013

At work with MS Stories, tips and resources to help you find your way in the changing world of work

Also in this issue Generating evidence for MS services: the story so far

Driving with MS: new research

Practical tips for better posture

15 minutes with Bernie Porter MBE

Join in the fun of the Santa Run MS Trust is the Official Charity for the 2013 DIFC Santa Run! Victoria Park, London Sunday 8 December This is a fun event for all the family, open to everyone, including children over the age of eight, and we’re looking for 100 people to join our team! You can choose from a 5K or 10K route, both of which are wheelchair accessible.

Free Santa Suit for every entrant!

Accessible family event

Register today for just £22 and raise a minimum of £100 in sponsorship to help the MS Trust support people affected by multiple sclerosis.

We will support you every step of the way!

Call 01462 476707 to find out more or visit mstrust.org.uk/santa2013

Contents

Welcome to the August Open Door As I write we’re basking in the warmest summer for many years, so forgive us for striking an unseasonal note in this issue. Not only do we have details about how you, your friends and family can sign up for our Santa Run in London in December (this year we are the official charity), but elsewhere in this mailing you should also find our 2013 Christmas Card catalogue. Though Christmas may be the last thing on your mind right now, both raise crucial funds for the MS Trust. In fact Christmas cards were central to the founding of the MS Trust – see page 20 for more details.

We also have information about how you can volunteer for the MS Trust at Cards For Good Causes shops (see page 13).

Volunteering can be a great way of gaining new experience and meeting new people, but also supporting a cause you feel passionately about. Last year we raised £48,000 from Cards For Good Causes, which helped us continue to supply free, up-to-date information for everyone affected by MS, including our At work with MS resources. This issue we take a fresh look at how the world of work is changing for people with MS and talk to three women who are determined that MS won’t get in the way of their working lives.

Also in the issue we look back on a very successful first year for GEMSS, our MS nurse support programme, and introduce our plans for the upcoming year. And we have our usual round-up of the latest MS news, the most interesting new research, and practical advice.

I’d like to thank all of you who gave us your thoughts on our May issue, which was the first in our new expanded format. The response has been overwhelmingly positive.

We’re keen to make Open Door even more engaging and useful, so if you have any thoughts or suggestions please email opendoor@mstrust.org.uk or call 01462 476700.

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News

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Research update

How we’ve helped nurses prove their impact; MS Trust research highlight disparities in access to service; Policy update: what’s the future of social care?; New drugs for relapsing MS; New study into secondary progressive MS; Cannabis ingredient has ‘no effect on slowing progression’; New treatment for uncontrollable laughing and crying

New research into MS and sight problems, whether early relapses predict later progression, and how MS affects your driving

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Focus on clinical trials

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Cover story: At work with MS

18

Postures new

20

Get involved

22

15 minutes with Bernadette Porter

Best wishes

Pam Macfarlane Chief Executive

Janice from our Information Team gives us the low-down on clinical trials

13: Volunteering for the MS Trust 14: How Emma Wardropper’s experience of MS inspires her work in HR 16: How Barbara Stensland and Anna Denton-Jones fought back to beat workplace bullies Helen Conyers, Specialist Physiotherapist at Dorset MS Service, explains how simple adjustments can make a big difference

Christmas in August, Remember A Charity, Three Cities Cycle Ride and thanks to our marathon runners.

The MS nurse who was recently honoured with an MBE answers your questions Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News Sign up for our weekly news alerts mstrust.org.uk/newsalerts

How we’ve helped MS nurses prove their impact MS Trust research into the impact of MS nurses was recently commended at the Royal College of Nursing as an example of good practice. Here we look back on the first year of GEMSS, our innovative MS nurse support programme, and look forward to some exciting developments ahead At the MS Trust we believe that one of the best ways to help people with MS is to support their specialist nurses. Since 1996 we’ve been leading the way in campaigning for and supporting their work. We funded the only research project which shows that, as well as being vital to people with MS, specialist nurses also save money for the NHS by keeping people out of hospital.

We estimate that a single MS specialist nurse can save the NHS around £65,000 a year.

However, in recent years we’ve had to step up our work.

As health budgets grow tighter, specialist MS nurses roles are under increasing pressure. This is why we’ve been working to help MS nurses demonstrate the impact of their work, so they can make the strongest case possible to managers and commissioners about the importance of their role.

Over the past year we’ve been piloting a project called GEMSS: Generating Evidence in Multiple Sclerosis Services. We recruited MS teams from Northumbria, Dorset, Dudley and Sheffield and worked with them to develop tools to enable them to collect and analyse data on their service,

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How can you get involved?

so that they can demonstrate the difference their work makes to people with MS. The pilot was a huge success, and has already helped keep at least one nurse in post. “Without data our future is insecure,” said one nurse who took part.

“But once the data is there it’s quite easy to update. It helps us present a really powerful case to managers. Quite often they didn’t realise the service they were getting.”

This year we’re going to produce a new report called Defining the Value of Specialist Allied Health Professionals in MS. This will show why the knowledge of specialist therapists, such as MS occupational therapists, is crucial. And we plan to to roll out the GEMSS project further so that more MS services, and more types of MS specialist, have access to the tools we’ve helped to develop.

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One of the most powerful ways for an MS service to demonstrate its impact is through the feedback of the people affected

by MS. One of the key elements of the GEMSS model is a thorough survey of service users.

So, if you get a survey from your local MS team, please fill it in and return it! You could be making all the difference to the future of your service.

In order to build on the success of the first year of GEMSS, and ensure even more MS services benefit from the project, we need your help.

Thanks to everyone who’s got involved in our Be Bold In Blue campaign and our spring appeal we’ve raised over £30,000 this year towards our nurse support programme. And there’s still time to get involved with your own Bold In Blue event.

Visit mstrust.org.uk/blue or call 01462 476707 to find out more.

For more information about the MS Trust’s nurse support programme and the GEMSS project visit mstrust.org.uk/nurses

Policy update Alice, the MS Trust’s Policy Officer, looks into the future of social care in the UK

Disparities in access to MS services Problems with access to physiotherapy have been highlighted in a study that made use of research conducted by the MS Trust and Royal College of Physicians (RCP).

The new study evaluated comments from the 2008 audit of MS services in England and Wales and found physiotherapy provision was rated poorest of NHS services. Although good services exist, knowing where to find them and getting access in a timely manner was a problem. Disappointingly, similar conclusions were found when the MS Trust and RCP repeated the audit in 2011.

In April, a report from the MS Society found that those who are struggling the most financially are the least likely to be able to access a range of support services, including physiotherapy. The MS Society’s survey also revealed that access to health professionals, particularly MS specialist nurses, varies widely across the country.

These studies underline the importance of the MS Trust’s call for equitable access to treatments and therapies for everyone affected by MS and of our work to support specialist services that may be under threat.

Social care is the practical support that many people need to continue with ordinary daily life. How it’s best provided at a time of growing need is a problem that each nation in the UK is addressing separately.

Scotland is integrating health and social care, including budgets, at a local level, with the Public Bodies (Joint Working) (Scotland) bill. This will introduce ‘integration joint boards’ which will monitor how health and social services work together to ensure joined-up delivery.

Northern Ireland has devised a new wave of collaborative networks called ‘Integrated Care Partnerships’. These bring together doctors, nurses, social workers and other health professionals to provide joinedup care at a local level.

Wales published its new Social Services bill in January, and subsequently relaunched its strategy for carers and delivered a three-year plan to improve social care.

England has launched the new Care Bill, which promises: • needs assessments for everyone, whether or not they pay for their care • a national minimum threshold for eligibility for social care (it’s anticipated that the threshold will be high, with no provision for people who only need some help)

• care planning, personal budgets and direct payments (control over the money, responsibility for finding care and carers rests with the recipient) • a national cap on care costs (although it’s unclear whether this will apply to people of working age) • Safeguarding Adults Boards, to protect adults from abuse and neglect • a right to a carer’s assessment, but only if the carer is aged over 18 The Government has mentioned integrating health and social care, with little indication of how to achieve this.

Will this work? Will services improve? It’s doubtful. Scotland and Northern Ireland are closest to fully integrated services, but also have very rapidly ageing and growing populations which will cause huge demand. In England, council budgets continue to be cut and it is very difficult to see how people with MS will have all their social care needs met as a result.

To find out more about how the MS Trust is working to improve services for people with MS visit mstrust.org.uk/action-for-ms

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News

Cannabis ingredient has ‘no effect on slowing progression’

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New drugs for relapsing MS

Alemtuzumab (Lemtrada) has moved closer to getting a licence following a recommendation of a committee of the European Medicines Agency (EMA), the European drug regulator, that it should be approved for people with active relapsing remitting MS. The final licence approval should happen in the next few months.

A second drug, teriflunomide (Aubagio), was recommended for approval in March. The manufacturer questioned the decision that the drug was not a ‘new active substance’ due to its similarity to an antirheumatic medication. This has now been resolved and teriflunomide is also expected to receive its final licence approval shortly.

The licensing of BG-12 (Tecfidera) has also been delayed. As the drug is based on an existing compound used to treat psoriasis, the manufacturer is concerned that the licence would not protect them from other companies making cheaper versions. The EMA’s final decision has been delayed to get clarification on this issue. The delay is not expected to affect when the drug becomes available on the NHS. Following the granting of a licence by the EMA, new treatments need approval by the National Institute for Health and Care Excellence (NICE) (in England and Wales) and the Scottish Medicines Consortium (SMC) in Scotland. NICE plans to hold its appraisal meetings for BG-12 and teriflunomide in August with final decisions due to be published in January.

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The appraisal meeting for alemtuzumab is in October and a decision expected in April 2014.

The MS Trust has been actively involved in the NICE appraisals; we’ll be attending the meetings in August and October and will report back via our website and Open Door.

A fourth drug, laquinimod, is also being considered by the EMA.

New study into secondary progressive MS

MS–SMART is a new trial that will assess three drugs, currently licensed for other conditions, which have shown promise in protecting nerves from damage in small studies in secondary progressive MS. Amiloride (a blood pressure tablet), ibudilast (asthma) and riluzole (motor neurone disease) will be tested against placebo (a dummy pill).

The two-year study will recruit 440 people with secondary progressive MS across the UK. Potential participants will be aged 25–65, not on disease modifying treatment and able to walk at least 20 metres (with the support of two crutches) or up to about 500 metres without help.

If successful, MS–SMART will be a vital step in starting to identify the first disease modifying therapy for people with secondary progressive MS. The MS Trust is not involved in the recruitment for this study. For further details about the study visit ms-smart.org or ring 0131 537 2553

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THC (tetrahydrocannabinol), one of the active ingredients in cannabis, has no effect on slowing progression in MS according to results published in Lancet Neurology.

The CUPID (Cannabinoid Use in Progressive Inflammatory brain Disease) study involved 493 people with progressive MS at centres around the UK. Participants took either a THC based drug called dronabinol or placebo for three years and MS progression was assessed throughout the study. The MS Trust funded the cost of MRI scans for this study.

The study found no evidence to support an effect on progression or evidence that dronabinol protects nerves from damage due to MS. There was some evidence to suggest a beneficial effect in people with lower levels of disability at the start of the study, but further, larger studies would be needed to confirm this.

Researchers did note that people in the study, whether on dronabinol or placebo, progressed less rapidly than had been expected from previous studies of the course of MS. This is encouraging news and reflects an improvement in the health and care of people with MS.

New treatment for uncontrollable laughing and crying

Nuedexta has been licensed as a treatment for pseudobulbar affect, a possible symptom of MS that results in uncontrollable bouts of laughing or crying.

Nuedexta, which is already licensed in the USA, is the first drug to become available for this symptom. To read more about the pseudobulbar affect see the A to Z of MS on our website: mstrust.org.uk/pseudobulbar

Research update Sign up for our weekly research email update mstrust.org.uk/research-update

Sight problems can linger and affect daily life Problems with vision are common but do they usually improve and what effects can they have?

Jasse L, et al.

Persistent visual impairment in multiple sclerosis: prevalence, mechanisms and resulting disability Multiple Sclerosis. 2013 Mar 5. [Epub ahead of print]

MS and vision

Problems with eyesight are common in MS and are often one of the first symptoms experienced.

They include double vision (diplopia), nystagmus (where the eyes move in a rhythmical manner) and optic neuritis. Optic neuritis is swelling of the optic nerve which goes from the eye to the brain. It often affects only one eye, can give partial blind spots, blurred or foggy vision, or colour vision disturbances. It can cause pain behind the eyeball and even complete loss of sight.

Looking into the problem

303 people with MS in France were asked about any eyesight problems that continued despite wearing glasses, and what difficulties they caused.

What was seen

Just over a quarter (26 per cent) had optic neuritis and one in eight (12 per cent) had oculomotor symptoms (abnormal movements of the eyeball) as one of their first symptoms.

During the whole course of their MS, just over half (53 per cent) had experienced at least one episode of optic neuritis and almost a third (31 per cent) had experienced at least one episode

of oculomotor symptoms.

Just over a third reported continuing problems with their vision. Out of this third, the most common symptoms were visual fatigue (59 per cent), double vision (35 per cent) and visual instability – being unable to see a clear picture of the world when moving the head or eyes (28 per cent). These symptoms were not related to age or how long someone had MS and were more common in men, those who had progressive MS from the beginning and those with a higher overall level of disability.

People with continuing sight problems were more likely (than other people with MS) to have had problems with vision at the beginning of their MS, at least one relapse with these symptoms and to have experienced significantly more relapses where visual symptoms occurred.

Looking in more depth

70 people who had continuing problems with their vision took tests which detect eyesight problems due to either damage to the nerves supplying the eye or to parts of the brain concerned with vision rather than problems with the eye itself. The researchers found that these were common and often affected

both eyes.

This group of people had a lower overall quality of life and this was more likely in those who were older or had been diagnosed with MS for longer.

It was also more common in people who had difficulty focusing sharply on either near or distant objects, had difficulty distinguishing light and dark and those who had a greater number of difficulties in the various tests.

Do you have sight problems?

Not all problems with vision are due to MS so it is important to be assessed regularly by an optician and have any glasses or contact lenses updated if needed.

In hot weather some people with MS may experience double vision, sharpness of vision, or black spots in the eyes. This is called Uhthoff’s phenomenon. There is more information about vision and MS in the A to Z of MS at mstrust.org.uk/atoz/vision

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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More relapses early in MS does not mean earlier progression Experiencing more relapses early in the course of MS can be very worrying and may lead people to ask whether this means that their MS will get worse much sooner.

Scalfari A, et al.

Early relapses, onset of progression, and late outcome in multiple sclerosis.

JAMA Neurology. 2013;70(2):214-22.

All participants with SPMS

When someone has been diagnosed with MS, one of the most common questions is ‘How will my MS develop?’. This research looked at whether the course of MS could be predicted by following 730 people with relapsing remitting MS (RRMS) in Canada for 28 years. In particular, they looked to see if people who experienced a higher relapse rate early in their MS went on to have earlier mobility difficulties or made the transition to secondary progressive MS (SPMS) sooner. Mobility difficulties were measured using the DSS (Disability Status Scale) scale which is an earlier form of the more commonly used EDSS scale. The researchers noted the time it took before someone had to use a walking stick (DSS score of 6) or became bedbound (DSS score of 8).

Looking at all those who had secondary progressive MS by the end of the 28 year study, those individuals who took longer to reach the transition from RRMS to SPMS also had a lower probability of reaching a DSS of 6 and a DSS of 8.

The length of time that someone’s MS was relapsing remitting did not predict the time it took for them to go from the SPMS transition to a particular DSS score.

What does it mean for me?

The researchers concluded that the number of early relapses does not predict the time it will take for someone’s MS to change from RRMS to SPMS as they observed the whole range of possibilities in their population.

This means that it is still impossible to predict the disease course of someone’s MS and, despite this long-term study, we still cannot answer the question ‘How will my MS develop’.

People with more early relapses

158 people experienced frequent early relapses, defined as at least three relapses in the first two years, but the longer term course of their MS varied. About two thirds (65 per cent) rapidly made the transition to SPMS (on average after five years) then to a DSS score of 6 (on average after seven years) and then a DSS score of 8 (after an average of 17 years).

However, one third of this group still had relapsing remitting MS at the end of the 28 year study.

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Living with the uncertainty of MS

Everyone’s MS is different and varies from day to day as well as in the longer term. People with MS often say that the most important thing is to live each day as it comes. Accepting this can be the best way to move forward. Trying to be positive and taking charge of managing MS, with the support of health professionals, can also be key.

Being ‘present in the moment’ is important and mindfulness, a type of meditation focusing on the present moment, can help with this. Trials suggest it can lead to improvements in depression, fatigue, anxiety and quality of life for people with MS. For more details see mstrust.org.uk/mindfulness

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Mild to moderate MS does not affect driving performance When you are diagnosed with MS you have to notify the DVLA who issue driving licenses. They might then ask your doctor for an assessment on your ability to drive.

But how does MS affect your driving?

Devos H, Brijs T, Alders G, et al.

Driving performance in persons with mild to moderate symptoms of multiple sclerosis.

Disability and Rehabilitation 2013;35(16):1387-1393.

The drivers

The research involved 17 healthy controls and 15 people with MS who were either mildly or moderately affected as measured by their EDSS scores, which ranged from 2.5 to 4 (average of 3.5).

The EDSS scale measures ability in eight functional systems, including the visual and sensory systems, and should detect difficulties that might affect driving such as eyesight problems, numbness, cognitive problems or difficulty moving arms or legs. An EDSS score of 2.5 represents mild disability in one functional system or minimal disability in two functional systems. An EDSS score of 4 represents significant disability but self-sufficient and up and about some 12 hours a day and able to walk without aid or rest for 500m.

Taking the test

Participants used a driving simulator to drive in daily traffic while, at the same time, being given another task to attend to.

A computer measured various aspects of their driving including the number of tickets, the number of accidents, the time to a collision, how well speed was maintained and how well someone drove in a smooth line.

The computer also measured how well someone performed on the second task which could be distracting their attention from driving.

Driving with MS

Pass or fail?

No difference in driving ability was found between people with mild to moderate MS and the healthy controls. However, people with MS scored less well on the task designed to distract their attention as they were slower to respond and gave fewer correct answers.

The authors concluded that people with mild to moderate MS were able to successfully prioritise driving over other distractions.

This research will be reassuring for people with mild to moderate MS. However, everyone with MS who holds a driving license still has to inform DVLA of their diagnosis or if their condition has become worse since their license was issued.

If you have any concerns about driving with MS, the Forum of Mobility Centres can help with information and do an assessment of driving ability. They can also advise on getting in and out of a vehicle and about loading and transporting a wheelchair or scooter. Call 0800 559 3636 or visit mobility-centres.org.uk

Motability

Motability is a national charity that helps people with a disability by providing adapted vehicles.

Call 0845 456 4566 or visit motability.co.uk

Rica

Rica, the consumer research group for older and disabled people, produces a publication called Motoring with multiple sclerosis that explores choosing and adapting a car and driving with MS. You can order online at rica.org.uk or by calling 020 7427 2460 or emailing mail@rica.org.uk

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Open Door Focus on: clinical trials

FOCUS ON:

Clinical trials No matter how promising MS treatments seem in the lab or in individuals, clinical trials are still the only reliable way to evaluate just how effective they actually are. MS Trust Information Officer Janice explains what clinical trials involve and why you might want to get involved

What is a clinical trial?

Clinical trials are tests that help us understand the safety and effectiveness of medical treatments. They are used in all areas of healthcare, not just to test new drugs. Researchers might set up a trial to find out if Pilates improves your balance, for example, or to see if setting up an MS relapse clinic might mean you need fewer hospital visits.

How do trials work?

A clinical trial might be funded by a research council, a charity, a healthcare company or the NHS. When a researcher is planning a trial, they draw up a trial protocol which provides the blueprint for the proposed research.

Clinical trials are usually controlled trials. This means that one group of volunteers will receive a new treatment (for example, a new drug), while others are given a placebo (that is, a substance with no therapeutic effect) or the best current standard treatment.

Who can take part?

The trial protocol will set strict guidelines for who can take part in the trial. It might specify

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particular age ranges, or the type of MS and disability level that people have. It might also rule out certain people – if you’ve taken certain drugs, for example, or if you’re pregnant.

What are the possible benefits of taking part in a clinical trial?

• You will be taking an active role in your medical care.

• You might be gaining access to new treatments that are not currently available.

• You will be receiving care from experts in the field.

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• You will be helping to improve medical knowledge.

What are the risks of taking part in a clinical trial?

• You might experience side effects.

• The treatment you receive might turn out to be worse than not being treated.

• You might be assigned to a ‘control’ group – that is, you won’t receive the treatment being studied.

• You might not be able to continue with an effective treatment when the trial ends.

Safety first

Before any trial can start it must be approved by an independent ethics committee which is responsible for protecting your interests. If you’re thinking of joining a trial you must be given clear information about what the trial is for and what you are agreeing to take part in.

Remember that you can always pull out of a trial at any time.

Once a trial is underway it will be monitored to ensure your safety. If you experience side effects that were not expected or if the new treatment is giving such good results that it is obviously much better than the standard treatment, the trial may be stopped. Be very wary of clinical trials which expect you to pay for treatment.

Finding a clinical trial

If you’re interested in taking part in a clinical trial, discuss it first with your neurologist or MS nurse, as they will normally be required to refer you. They might also know of a trial that would be suitable for you.

A number of websites list clinical trials in the UK • UK Clinical Trials Gateway – clinical trials running in the UK www.ukctg.nihr.ac.uk • Trialreach – find clinical trials with study centres near you trialreach.com • ClinicalTrials.gov – international site, you can select studies with UK centres clinicaltrials.gov For more information about clinical trials visit mstrust.org.uk/clinicaltrials

“I thought ‘Why not?’”

Simon Elsom was diagnosed with secondary progressive MS 15 years ago. Here he shares his experience of taking part in a clinical trial for simvastatin

How did you find out about the trial?

Secondary progressive MS is often the ‘poor relation’ when it comes to available treatments, so when I read about a simvastatin trial in Open Door, I thought “Why not?”. I had the time for clinic visits and matched the requirements. Simvastatin is normally used for high cholesterol levels but lab studies suggested it might slow down MS progression by protecting nerves. The trial was designed to see if a high dose (80 miligrams a day, twice the normal dose for lowering blood cholesterol) would slow down progression.

What did it involve?

I was on the study for two years.

I took pills every day, but I didn’t know if I was taking simvastatin or a placebo. I had three MRIs during the study to measure brain volume and a batch of tests at the beginning, and at intervals, to monitor my MS.

What were the results?

The group taking simvastatin had less brain volume loss, had a slower change in their disability, and a better score on how MS affects daily life. But there was no difference in mobility, manual dexterity or cognition between the two groups.

What did you learn?

At the end of the trial I found out that I had been taking simvastatin. As I had done well I wanted to carry on taking the drug. But after checking with the neurologist, my GP refused to prescribe it, since this small, early study was not enough proof and there were worries that taking a high dose, long-term, might cause damage. This surprised (and disappointed) me, since simvastatin is a very widely-used drug. However, once I stopped taking simvastatin, nerve pain that had been bothering me (and which I’d blamed on MS) disappeared. My GP tells me that this is a side effect of statins, probably more so at the higher dose I was taking.

For more information about the simvastatin study visit mstrust.org.uk/simvastatin

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Open Door Cover story

At work with MS When you’re diagnosed with MS family, friends and even health professionals might assume you have to stop working. But for many people with MS this needn’t be the case.

At the moment up to 80 per cent of people with MS stop working within 15 years of the onset of the condition. Up to 44 per cent of people with MS retire early – one of the highest figures in Europe.

The world of work is changing. In many areas the traditional idea of a job for life is over, and this can mean a worrying loss of security.

But a new flexibility in employment – part-time work, freelance work or working from home – can offer new opportunities for people with longterm conditions.

Technology is changing the workplace – and this, too, can offer opportunities: from working from home to assistive technology.

More and more people with long-term conditions are realising that, with proper planning and necessary adjustments, they can continue to stay active in the workplace.

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The Work Foundation report into Work and MS* identified three key points that could help people with MS to stay on at work for as long as possible: • Take control Think proactively about your work and the adjustments you will need to continue.

• Be assertive Tell your employer about your MS as early as possible so that you can get timely access to support at work. You might be worried, but if you let people know early on, you will be more able to organise the best, most effective support.

• Educate colleagues Take an active role in telling your coworkers about MS and how it affects you, and let them know how changes to your working time and practices will help you to work effectively.

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“Sometimes I feel my life is like a room where, from time to time, the walls move in a few inches. Work is one way of pushing them back.”

Over the next few pages we look at MS Trust resources that can help you explore all the employment options available to you, and talk to three women about how MS has affected their working lives: Emma Wardropper who was diagnosed at 22 and, as a HR worker at Capital One in Nottingham, has helped to make it one of Britain’s best workplaces. Barbara Stensland, who stood up to workplace prejudice. And Anna DentonJones, the employment lawyer who helped Barbara fight back against her unfair dismissal. *Read the report at mstrust.org.uk/workfoundation

Open Door Cover story

What the MS Trust is doing

In 2005 we funded a three-year study to identify the barriers to employment for people with MS. We discovered that there was a lack of information about working with MS and identified practical steps that could be taken by people with MS, their employers, and health and social care professionals to help them stay in work.

Initially it led us to publish a book, At Work with MS, which offers advice for people with MS on how they might approach the many employment-related issues they face.

The book considers some of the ways in which MS might affect work, the protection afforded under the Equality Act and what adjustments can be made for a successful working life – for example, being flexible about hours, incorporating more breaks into the day or considering how a job is structured.

Since then we’ve expanded the programme to offer additional online help to people with MS. The At Work with MS website (mstrust.org.uk/work) now features videos of people with MS talking about their experience of employment, and includes interactive tools to help you: • assess and adjust your work environment • draw up an action plan to achieve particular goals • unpick what’s really worrying you at work We’ve also produced much-

needed tools and training for health professionals. The At Work with MS toolkit for health professionals (mstrust.org.uk/ hptoolkit) provides assessment and work sheets to enable the health professionals who work with people with MS to manage their condition and their work, most effectively

Next steps

The response to At Work with MS has been very positive but we are always looking to improve our resources. Your feedback suggests we could include more information on finding a new job, recruitment support and when to communicate MS to future employers. We’d love to hear your views. Have you found the MS Trust work resources useful? Are there any gaps or areas you feel could be expanded?

In particular we are keen to hear from people about managing the transition from employment into retirement.

How did you cope with life after work? Is there anything you wish you had known when you left work? How do you maintain social contacts?

Let us know at opendoor@mstrust.org.uk

Volunteering for the MS Trust

We are often asked how people can volunteer to support the work of the MS Trust. One great way you can help is by volunteering at a Cards for Good Causes shop.

To participate in the scheme, and raise vital funds for our work supporting everyone with MS, we urgently need people who can spare one morning or afternoon per week in the eight weeks before Christmas.

Duties might include operating a simple electronic till, dealing with payments and keeping the shop tidy.

Last year MS Trust supporter Rachael helped in a shop in Worcester. “Volunteering helped me to regain confidence after leaving my full-time job due to my fatigue and cognitive difficulties. I took to the till quickly, which was reassuring, and really enjoyed meeting fellow volunteers and serving customers.”

We need volunteers across the UK, particularly in Folkestone, Barnstaple and south-west London.

If you can help give us a call on 01462 476707 or email fundraising@mstrust.org.uk.

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

13

Open Door Cover story

Why let someone go?

Emma Wardropper was diagnosed with MS when she was 22. She’s now Employee Relations Advisor in the Human Resources team at Capital One, the leading credit card company which was recently voted Britain’s best workplace. Here she explains how she her experience has made her determined to improve the employment prospects of people with MS.

I

started working at Capital One in 2000 after university, not really knowing what type of work I wanted to get into.

I started in the call centre and then I moved into the Fraud Department. While I was working in Fraud I started to get blurry vision and get really tired. In the end my GP referred me to go the hospital for three days worth of steroids. Shortly after that I had a massive relapse. I was completely paralysed. I was in hospital for two months, and then a rehab unit for a month after that. In a way I was lucky because I was put on beta interferon straight away.

My line manager at the time didn’t really know what to do, I don’t think he had even consulted with Human Resources (HR), which was a bit of a worry! I know the process is very different now. I did a gradual return and work made sure everything was in place for me.

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I suppose my MS made me even more keen to get into HR

It never crossed my mind that my working life was over. I was only 22. I always presumed that MS was something I had, and I would get better and I would return to work. I never considered reducing my hours at all.

Work allowed me to go for my beta interferon injections once a week. Looking back now, that was a reasonable adjustment that they made. I didn’t have to make the time up or take it as sick time.

I suppose my MS made me even more keen to get into HR, to support people. But I was very open about my MS from the start. I definitely feel you need to actively educate co-workers about MS. People hear it and think it’s quite a scary term, but they have to understand it affects everyone differently.

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Little things can make a big difference

In my role I’ve advised a few staff who have MS. We had a lady who was diagnosed with MS a couple of years ago. Her manager came to me and said “I don’t know what to do, I’ve got no idea”. So I spent time with the manager, sharing my own experience of MS, talking about what it is, the different treatments, and things we could do to help her back. We got a car parking space set up and a fan at her desk to keep her cool. Just little things can make a difference. Hopefully it was useful for the manager and the employee has said that she’s had a really good return.

We’ve also got someone who’s very recently been diagnosed, so I’ve been thinking about how to advise him. I try to give as much information as I can, to share my experience, so they don’t feel so daunted. I’d definitely recommend a graduated return.

Open Door Cover story

“It never crossed my mind that my working life was over. I was only 22.”

Emma Wardropper at the Capital One offices in Nottingham

If you’re desperate to return to work, often the worst thing can be to come back too quickly and get tired and get sick again. I’d tell them to be as open as they can with their manager. That’s how it works with my manager – I work one day a week from home. She allows things like that because then if I’m tired I get a bit of a rest. She knows if I push myself too much I could relapse.

When someone is first diagnosed they’ve also got the whole psychological side of it to come to terms with. Everyone has their own journey they go through, but you need that open dialogue with your manager so that they know what they can do to support you. I’m trying to encourage everyone with MS to come on mindfulness workshops at the moment, to help them focus on the moment. If people are having difficulty coming to terms with their diagnosis, the support is there.

Great for business

If I were to advise employers about helping employees with MS I would say you’ve got to think you don’t want to lose someone. Why not hold on to someone and make a success story out of it? That could be great for the business and help with recruitment.

When somebody has a disability they’re often taking less sick time, because they’re more in tune with their body. I know my body really well. I know when to stop, I know when to slow down.

Engagement is a key thing for us at Capital One. The management here are good at seeing the link. Our HR director is really passionate about it – she likes the fact that I’m open about my disability, and hopefully that gets more people to be open about theirs. It’s bringing it out into the open, and promoting the advantage of having people with disabilities and long-term conditions in the workplace.

Access to Work

An Access to Work grant helps pay for practical support so you can do your job. You may be able to apply if you have a disability, health or mental health condition. You might not feel that your symptoms qualify you as ‘disabled’, but remember that hidden symptoms, such as fatigue, are considered a disability even though they can’t be seen.

The money you get can pay for things like: • specialist equipment • travel when you can’t use public transport • a communicator at a job interview How much you get depends on your circumstances. It’s only available in England, Scotland and Wales.

For more details visit gov.uk/access-to-work

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15

Open Door Cover story

Beating the bullies Having already fought to get her MS diagnosis Barbara Stensland was determined not to take workplace bullying and dismissal lying down. After a chance Christmas Day introduction to employment lawyer Anna Denton-Jones (who also has MS), they worked together to fight back

B

arbara Stensland had a difficult 2012. All through the long process of of being diagnosed with MS, the routine of a job she loved had given her much needed structure. But finally getting a diagnosis in May turned out to be the beginning of a new set of problems. At first, when she was relieved of minor duties at work, it seemed thoughtful of management, helping her to focus on her more important work. But over time she was forbidden from driving on company business, told not to go down the stairs to collect post in case she tripped, and excluded from meetings.

Once supportive colleagues became bullies. Finally in October she was told her job was no longer viable and was sacked.

“I was basically told to stay at home and collect benefits!” says Barbara today, still outraged.

Coming home

Things turned around on Christmas Day. “I suggested that my son do something meaningful for Christmas, so I volunteered us both to serve dinner to 50 old people,” she laughs. “Naturally he went to his bedroom and slammed the door! But it was a good experience. And while we

16

“My GP asked me when I was giving up work, like it was standard procedure!”

were there I got talking to another volunteer who was a lawyer, and he said ‘You must talk to Anna Denton-Jones’. And I said ‘Yeah, yeah – heard it all before, sorry.’

But in the end I thought OK, one last chance to get something from this. Not money, but a chance to fight back against what they’ve done. So I picked up the phone and called Anna. I was explaining MS fatigue and she said ‘I’ll stop you right there – I’ve actually got MS myself, so you don’t need to tell me what it is’. And that was it! That was the point I’d been working for. It was like coming home!”

“I can definitely remember the first time Barbara phoned me,” says Anna. “We ended up just chatting for ages about MS and our lives in general rather than anything to do with the case.”

Anna was diagnosed with MS in 2005. “I decided from the get-go that I would be very open about it,” says Anna about her own experience of returning to work.

“Everyone would know. Partly because I wanted to challenge

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the image that people have about MS. I felt very strongly about that.

My employers did do the right thing in terms of sending off for a medical report and writing to my consultant. They did make adjustments in terms of my working hours and car. But I still felt that there was a sense that I was going to let them down.

Despite the fact that I had worked for them for five or six years and I had never missed an appointment or let anybody down! There was always a question mark hanging over me. Which is why I went selfemployed again.”

Talking turkey

Together the pair drew up an action plan. “Once Anna had stopped laughing in disbelief at my story!” says Barbara. “Once I’d stopped being outraged!” agrees Anna.

“The strategy was pretty much to write a letter before action, which is drawing out the salient points of what’s happened and saying you’re in trouble here,” Anna explains.

“You’ve done this wrong and this wrong. We can go off to court about this, but wouldn’t it be more sensible if we talked turkey? We made a suggestion of what that might look like and I think they jumped at the chance. It was a straightforward process in the end.

Open Door Cover story

It was resolved quite quickly and easily. In general employers are quite scared of an allegation of discrimination. If only for the reason that with the Equality Act there is unlimited damages potential. It’s all a bit scary financially, before you think of reputational damage. So I think people who have been badly treated are often in a stronger position than they think they are.

Barbara is now working for a friend, helping project manage building contracts while she “The fact that we took finishes her degree. Once them on and won could pave that’s finished she hopes to the way for other people.” find work in the charity sector.

Barbara Stensland, right, with She’s also started a very Anna Denton-Jones popular blog, Stumbling in Flats (stumblinginflats.com) detailing Don’t jump to conclusions her “funny old life with MS”. “I How would they advise someone wanted to show it’s not all doom who’s just been diagnosed with and gloom,” she says. “So much MS to handle their work situation? coverage of MS focuses on “I would definitely say don’t jump extremes. For a lot of us with to any conclusions about the MS, who are diagnosed when way your working life is going to we’re quite young, MS is just a be affected,” says Anna. “How part of everyday life, something many people with MS give up you live with while you’re making work straight away?” continues the kids’ lunches or doing the Barbara. “My GP asked me when weekly shop. I’ve written about I was giving up work, like it was my experience with work and standard procedure! That was I’ve got such wonderful feedback quite shocking! It’s often the case from people. I think it is about the people with MS know more standing up. The fact that we about the condition than their GPs took them on and won could these days” pave the way for other people.”

To find out more about your rights at work see mstrust.org.uk/work

For more about tackling discrimination see the Equal Rights Commission pages at equalityhumanrights.com/ discrimination Do you have a question about your rights at work?

Send an email to opendoor@ mstrust.org.uk and Anna will answer a selection of your questions on the MS Trust blog: mstrust.org.uk/blog

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

17

Open Door Postures new

Postures new Most people have to work at keeping a good posture. But if you have MS you might find that keeping a good posture can be more challenging due to weakness, pain and fatigue. Poor posture can develop gradually, often without you noticing, until it interferes with every day tasks or causes pain. Helen Conyers, Specialist Physiotherapist at Dorset MS Service, Poole Hospital NHS Foundation Trust explains how simple changes can make a big difference.

Sitting

When you are sitting, you want a seat that will support your natural curves, helping keep your back in a neutral position so it is under the least amount of stress.

Sitting at a desk

• If you work at a desk, make sure it is set up to help you maintain good posture and remain comfortable.

• Adjust your chair so that your lower back is properly supported.

• If there is a gap between your lower back and the chair, place

a small rolled up towel or small cushion in the small of your back to support this area.

• Your knees should be level with your hips and your feet should be flat on the floor or on a footrest.

• If you use a keyboard, your wrists and forearms should be straight and level with the floor.

• The top of the computer screen should be roughly at eye level.

• Keep the mouse close so you don’t need to stretch to use it.

• Keep frequently-used objects, such as the telephone, within

easy reach.

• Have frequent breaks from your desk.

• If you are struggling with poor seating at work and this is causing fatigue or pain, speak to your line manager about having a work-station assessment or contact your occupational health department.

• You might also qualify for an Access to Work grant. This can help to pay for special adaptations to your workplace to help keep you at work.

For more details visit gov.uk/access-to-work

Sitting on the sofa or easy chair

• Often sofas are too deep and/ or too low and this encourages a slouched posture.

• Try raising the seat height with another cushion or high-density foam under the sofa cushion, or put blocks under the base so that your knees are the same height as your hips when you are sitting.

• Try reducing the depth of a seat by putting a large cushion or pillow behind your back.

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Open Door Postures new

Try this...

When watching television, when the adverts come on, sit up away from the back rest and try practising sitting in a good posture. With regular practice you will find that you can hold this posture until the next ad break.

Standing • If the seat is too high, a cushion under your feet can bring your knees up so there is less pressure on the backs of your knees.

• If the armrests are too low this can also encourage you to slump. Try pillows or cushions under your arms. This is also good if you have any pain in your neck or arm as it takes the weight of the arm off the neck.

• When reading, try propping your book up on a cushion so it’s more upright. This helps you keep your head up more rather than bending your neck looking down. You can also buy book stands which can do the same job.

• If you are putting your feet up on a stool or on the sofa, be careful with your posture.

• To help keep your ‘spine in line’ and maintain its natural curves, put a small cushion in your low back to help maintain your lumbar curve (curve in your low back).

• Put cushions under the knees to help support them in a slightly flexed position. This takes the strain of tight leg muscles off your back.

• Don’t sit for too long sitting with your feet up as it is a naturally flexed position which will put a strain on your back and neck. Make sure you change your position regularly.

• Try to stand with equal weight on both legs rather than on one leg or in a stooped position.

• If you find it hard to stand for any length of time and you notice that you are starting to slouch or sag, consider whether you could pace your activities. Try alternating a standing activity with a sitting activity or use a stool to perch on when you’re doing a job like preparing vegetables at the sink or cooking. Perching stools are often available from social services. If you feel you may need one, discuss with your nurse or therapist

Lying

• Low back pain, leg spasms or leg pain can all be aggravated by the way you lie.

• If your pelvis is twisted (because your legs rest to one side when lying on your back) or the weight of your leg pulls on it when lying on your side, putting a pillow between your legs or under your knees can help.

• If you have neck pain or arm weakness, putting a pillow under your arm can help as this takes the weight of the arm off the neck.

• Improving your core stability (the strength of the muscles in your back and abdomen) will also help you maintain a good posture. Pilates, yoga and tai chi and other simple exercises can all help with this.

Understanding and improving your posture

These tips are taken from the MS Trust online resource Understanding and improving your posture: A self-help guide to improving posture. To read more visit mstrust.org.uk/posture

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

19

Open Door Get involved

Find out how you can

Get involved

Feeling festive?

Suppo everyo rt ne living with M S

Hopefully you will have noticed our Christmas card catalogue included in this mailing of Open Door.

Perhaps you saw it and exclaimed “Christmas?! But it’s only August!”. There’s a very good explanation.

Christmas cards have been a vital source of funding for the MS Trust ever since we were founded in 1993. In fact, in the beginning it was the only way we raised money.

We send the catalogue in August simply to save money on postage. By sending the catalogues with Open Door, rather than mailing them separately, we ensure that more of the money raised through the

sale of cards each year goes to help people with MS. When you buy directly from us through our brochure or website, we receive 100 per cent of the profits.

Just two packs of cards could pay for us to send out a copy of our Kids’ Guide to MS, to help a young child understand their parent’s MS. By ordering your Christmas cards from us, you will be making a difference for people with MS and their families.

Please take a look at our catalogue or visit mstrust.org.uk/christmas to order online.

Take a moment to remember the MS Trust Writing a will is a way of helping the people you care about after you’re gone. Leaving a gift in your will to a charity like the MS Trust can be a great way of increasing that help even further, to the hundreds of thousands of people affected by MS. Running from 9–15 of September, Remember A Charity In Your Will Week will see 140 charities working together to help more people support the cause they are passionate about through a gift in their will. This Remember 20

a Charity in your Will week we hope you might take a moment and consider leaving a gift to the MS Trust.

The money the MS Trust receives from gifts in wills helps to fund our vital work, including Open Door and our free information for people with MS. We don’t receive government funding for these services and rely entirely on the support of individuals. A gift in your will can help ensure our support is available to future generations

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of people with MS and their families.

To find out more call 01462 476700 or visit mstrust.org.uk/legacy

Open Door Get involved

Back in the saddle After she was diagnosed with MS two years ago, physiotherapist Margaret Manthorpe wanted to set herself a physical challenge.

She also wanted to give something back to the MS Trust. So, along with 15 other MS Trust supporters, she chose take part in our Three Cities Cycle Ride from London to Brussels via Amsterdam which takes place at the end of August.

On my fundraising page I said that someone very near to me has relapsing remitting MS. The truth is that person is me! I was officially diagnosed two years ago after a relapse which caused weakness and aching in my right arm and hand, and difficulty in walking. As a physiotherapist, this was not easy for me.

Earlier this year I decided I needed a cycle challenge to get me back on my bike and to give me a goal to improve my fitness.

I chose to do this for the MS Trust as I have received valuable information from them. Initially I loved the look of the Vietnam cycle ride but knowing how heat can affect me, the Three Cities ride seemed a more sensible option.

I work from home three days a week and from a clinic six miles away two days a week. On my clinic days I cycle to and from work. As we have a gym at the clinic I also do an hour or more of higher level exercise after work.

At the weekend I am doing one or two cycles, gradually building up my distances and speed.

I took part in the MS Trust’s 50 mile cycle around Goodwood

Motor Circuit in May and I was inspired by my success. I am struggling a little at the moment with how hard I can push myself without suffering fatigue. It is all training and trial and error!

Fundraising has not been too hard as the majority of donations have been from clients, friends and family. When I set up my fundraising page I encouraged a few friends to donate extremely generous amounts and this kept further donations fairly high too.

This generosity inspires me to keep training and gives me even more determination to succeed and not let them down!

We are currently booking for three cycle challenges in 2014: the 3 Cities cycle ride from 28 May to 1 June, the London to Paris ride from 18 to 22 June and the Vietnam cycle from 29 October to 9 November. For more information, please call us or visit mstrust.org.uk/overseas.

Capital achievement We would like to say a huge thank you to everyone who ran for us in this year’s London Marathon The London Marathon is one of our biggest fundraising events and this year raised £175,000. This will help us to continue to provide free information, making life better today, for everyone affected by MS. This year Team MS Trust comprised 60 runners. For some, such as Daniel Harrison (pictured below), this was their first marathon. Daniel was inspired to train and raise funds when a friend was diagnosed with MS.

We are lucky to be supported by many runners who get places through the ballot. If you or someone you know gets a place in the ballot this autumn, please give us a call to find out about joining us.

We can offer regular training advice, meetings before the event and a post-race reception on the day. We also have two cheering squads along the route, so if you would like to join us on 13 April 2014 please get in touch.

Call 01462 476700 or email fundraising@mstrust.org.uk

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

21

Open Door Mr Motivator

15 Bernie Porter

minutes with

Bernie Porter is MS Consultant Nurse at the National Hospital for Neurology and Neurosurgery in London and was a trustee of the MS Trust between 2008–10. This summer she was awarded an honorary MBE for services to nursing

How did family and colleagues react to news of your honour?

They’re so thrilled. Obviously family would be. But it’s been such a morale booster here at work.

Everyone has been very energised by it. One of the nicest things was people with MS writing to me with congratulations and well wishes.

I’m delighted that it’s raising the profile of MS.

challenge. And the people I meet are so dignified in how they deal with the condition, no matter what.

What’s the most important thing to tell someone who’s just been diagnosed?

I sometimes think that we maybe start telling people too soon.

When someone’s diagnosed I think often we sweep in and start giving lots of information.

And I’m not sure that’s always What’s the biggest change right. I think often people need a you’ve seen in your time as little bit of time on their own. It’s a very individual thing, isn’t it? an MS nurse?

Some people want it all that day.

The availability of the disease Other people tell me that they’re modifying drugs, obviously. But so shocked that they really want also the shift from the in-patient, to leave and they’ll come back ward-based care, to out-patient. when they’re in a better place The shift for the future is to move and can receive the information. from out-patient care into the It’s working with each individual. community.

What are you proudest of?

Probably the work I’ve done with the MS Trust and Royal College of Nursing on the competencybased work for MS nurses.

When I started there was a few other nurses but there were no frameworks in place. We didn’t have the week’s training in Hitchin that the MS Trust now offers.

Being able to help create an infrastructure to train the nurses and to grow the specialism – that’s one of the best things I’ve done.

What has inspired you?

It sounds a bit clichéd, but people with MS. Living with MS is such a 22

What developments in MS care excite you?

The new drugs in the pipeline.

But for me I’d have to say that we can start using technology a bit better. Like everyone having their own electronic health records. Being able to have your electronic prescription. Just being in charge of your health in the same way you’re in charge of your money or your holidays.

What difference has the MS Trust made to you?

Oh huge. It’s supported my professional growth. I was awarded a scholarship which

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enabled me to complete my masters in neuroscience, which was a fantastic support. And galvanising the community of MS nurses, especially in the early days when there was only a few of us and we were very isolated.

The Trust acted as a broker and a social hub that kept us together.

Is it hard to clock off at the end of the day?

I have lots of creative friends who don’t work in healthcare and I spend time with them which is refreshing and stimulating. And I love to cook and travel. So I have plenty to distract me in my free time.

Making work work for people with MS The world of work is constantly changing. And that means our small team at the MS Trust has to work hard to make sure the free information that we offer on employment issues – on our website and in our publications – is always up to date.

We were very fortunate to receive funding to produce our original At work with MS booklet in 2011. However since then statistics have changed, the benefits system has been overhauled and new legislation has been put in place. All of this makes a huge difference to people with MS. At the MS Trust we pride ourselves on providing free, accurate, evidence-based information to help everyone affected by MS make their lives better today. And it’s thanks to donations from you we can continue to offer this service. Accurate, helpful information about employment rights, reasonable adjustments and forward planning can make a huge difference to whether someone with MS stays on at work when they are diagnosed. And staying on at work can be a huge benefit to people with MS and their families. A donation of just £25 could help make that difference.

“I have recently left work [...], I should have read this first! It is so comprehensive, covering such a lot, easy to read and understand includes quotes from real people, this would certainly help people through the process and help them to address their worries and concerns”

Donation form I would like to make a donation of: £10

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If you would prefer, we can take your donation over the phone on 01462 476700 or online at mstrust.org.uk/donate.

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Tick the gift aid box and for every £1 you donate, we will receive an extra 25p from HMRC at no extra cost to you!

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Signed: Date: ___ /___ /___ I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give.

Please notify us if you change your name or address.

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With over fifty people being diagnosed with MS every week in the UK, we need your help to ensure everyone affected by MS continues to receive the support they need.

By returning the donation form opposite and giving whatever you can, you will help us to continue providing free, up-to-date information to everyone who needs it.

Thank you for supporting the MS Trust.

Alternatively donate online at mstrust.org.uk/donate or call 01462 476700

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Order form For a full list of publications or to read online visit mstrust.org.uk/pubs

Resources from the MS Trust At work with MS: managing life and work

DVDs Move it for MS – a DVD of exercises for people with MS

Books Are you sitting comfortably..?

MS and me: a self-management guide to life with MS Living with fatigue Primary progressive MS exposed MS explained (revised) Disease modifying drug therapy

At work with MS aims to support people with At work with MS managing life and work multiple sclerosis to continue and thrive in the workplace. It does this by helping people to: • recognise early potential difficulties at work • develop strategies and suggest adaptations to manage problems • work in partnership with health professionals and employers to find the most effective solutions • answer some of the questions that arise when working with MS Gail Townsend Lynn Fox

Tips for living with MS At work with MS: managing life and work

Factsheets Our regularly updated factsheets include Alemtuzumab (Lemtrada) Bladder management BG12 (Tecfidera)

Depression

Laquinimod

Vitamin D (revised)

Teriflunomide (Aubagio)

Pregnancy & parenthood

Pain

Spasticity and spasms

Posture resources

Name

• Are you sitting comfortably..? – A selfhelp guide to good posture in sitting • Understanding and improving your posture – a set of web pages written for people with MS but may also be useful reading for friends, family and health professionals.

Job title (if health professional

Living with fatigue

Publication leaflet The full list of titles available from the MS Trust.

All items are free but if you would like to make a donation we would be very grateful. See overleaf for a donation form and to find out how your donation can make a difference to everyone affected by MS.

Address

Postcode We’d love to keep you up to date with our latest information. If you’re happy to stay in touch please enter your email address

Fatigue is one of the commonest symptoms of MS and can have a major impact on daily life. Living With Fatigue is full of practical ideas and suggestions to help people manage their own fatigue and is illustrated with comments by people who live with the symptom.

Pain factsheet See overleaf for the MS Trust’s data protection policy Return to MS Trust, Spirella Building, Letchworth Garden City, Herts SG6 4ET

Second Edition

It is estimated that more than half of all people with MS will experience pain of some sort, yet the symptom remains difficult to treat. This factsheet looks at the different types of pain that can affect people with MS and some of the approaches to managing the symptom.