July 2015- Way Ahead - Volume 19 Part 3

The periodical for health professionals with an interest in MS July 2015

Volume 19 Part 3

I S S N 1466-559x

2-5 Research news Round up of news from the 2015 AAN meeting, Lyrica for neuropathic pain and changes to eligibility for fingolimod in Scotland.

5-8 Lost to follow up?

Geraldine Mynors

Looks at the approaches taken in two areas of the UK, by participants in the GEMSS project, to identify people with MS who are not known to, and may benefit from, their MS service.

11-13 Thriving with MS Jane Stuchbury

Study explores the lived experience of single women with MS who consider themselves to be living ’flourishing’ lives, and the processes by which this was achieved.

14-16 Supporting children when a parent has MS Rachel Tam

Article discusses the importance of considering children’s needs when MS enters the family. Also looks at the experiences and reservations of health professionals working in this field, and some ways to overcome them.

17 Information news News about revised and withdrawn publications from the MS Trust.

18 Professional development

Information on the MS Trust Annual Conference 2015 and the QuDoS in MS awards.

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8-10 Disease modifying drug monitoring using iPads Heledd Tomos

Pilot study which explores the use of iPads to monitor DMT compliance, thereby improving patient access and service efficiency in South West Wales. www.mstrust.org.uk

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Research news AAN 2015 meeting The 67th annual meeting of the American Academy of Neurology (AAN) took place in Washington from 18-25 April with over 500 presentations about MS. The abstracts from the meeting can be browsed on the AAN website at www.abstracts2view.com/aan/ and we have provided abstract numbers for the items highlighted below. The meeting provided the opportunity to showcase new research data but the results are not peer reviewed, so the information can only be taken as indicative.

Many of the studies use NEDA (No Evidence of Disease Activity) as a measure of the effectiveness of a particular treatment.

NEDA, which is also referred to as freedom from disease activity, is a new treatment goal for MS and is defined as a combination of: • absence of relapses • absence of increased disability which lasts more than three months • absence of MRI evidence of MS activity.

However, the concept of NEDA is still evolving and there is debate over additional measures that could, or should, be included, such as loss of brain volume. As NEDA is still being defined in a number of ways, we have indicated, where known, what the definition of NEDA is for each individual study.

Find out more about NEDA in the A-Z of MS: www.mstrust.org.uk/atoz

Remyelination and/or neuroprotection This year’s meeting had encouraging results for potential treatments that promote remyelination or that may be neuroprotective, so possibly slowing the progress of disability.

High dose biotin (MD1003) – phase III pharmaceutical grade biotin used for this trial in progressive MS study. [Abstract: PL2.002] MD1003 is a highly concentrated formulation of biotin (also known as vitamin B7, vitamin H or coenzyme R). A phase III study recruited 144 people with primary or secondary progressive MS who were having increasing difficulty with walking and leg weakness.

Participants took MD1003 or placebo for up to two years.

The main outcome measure of the study was improvement in disability after nine months of treatment which was still evident at 12 months. None of the placebo group, but 13% of the MD1003 group, achieved this outcome. Further analysis showed evidence of a small decrease in the risk of progression; in the MD1003 group there was an average EDSS decrease of 0.03 at month 12, compared with an average increase of 0.13 in the placebo group.

The dose of biotin taken in the trial corresponds to 10,000 times the recommended daily intake of biotin. Although biotin is available as a supplement, the researchers stated that people with MS should not take large quantities of biotin supplements which are manufactured to a lower quality than the www.mstrust.org.uk

Find out more about MD1003/biotin and other treatments in development www.mstrust.org.uk/did

Anti-LINGO-1 (BIIB033) – phase II trial in optic neuritis

In the phase II RENEW clinical trial, BIIB033 was compared to placebo in 82 people who had recently had a first episode of optic neuritis, but did not have a diagnosis of MS. Participants received a total of six intravenous infusions of the drug or placebo every four weeks and were followed for a total of 32 weeks. BIIB033 was no better than placebo at improving vision, but researchers found that the time for a signal to travel from the retina to the brain, measured by visual evoked potentials, was improved slightly, but statistically significantly, in those who took BIIB033. This may be evidence that the myelin sheath around the optic nerve had been repaired. [Abstract: P7.202] Find out more about BIIB033/anti-LINGO-1 and other treatments in development: www.mstrust.org.uk/did

Phenytoin – optic neuritis

phase

II

trial

in was no difference in measures of the quality of

In a phase II study, 86 people with optic neuritis, who did not have a diagnosis of MS, took either phenytoin or placebo for three months. Researchers measured the thickness of the retina at the start of the trial and again after six months, as thinning of the retina is known to indicate damage to nerves elsewhere in the brain and spinal cord. Although there

vision, the group taking phenytoin had about a third less damage to cells in the retina than was seen in the placebo group. The researchers propose that phenytoin has a neuroprotective effect which could potentially slow the buildup of disability. [Abstract: PL2.005] Find out more about phenytoin in the A to Z of MS: www.mstrust.org.uk/atoz

Disease modifying treatments Natalizumab (Tysabri) – extended Peginterferon beta-1a (Plegridy) – dosing schedule extension study looking for NEDA This study compared 1,078 people on the standard four weekly dose of Tysabri with 886 people who received the treatment less often, with up to eight weeks between infusions.

They found that extending the dosing schedule did not affect the drug’s efficacy with 65% of participants in each group showing no clinical activity and comparable rates of new lesions reported on imaging. [Abstract: P3.267]

Dimethyl fumarate (Tecfidera) further analysis of trial data

–

Further analysis from the phase III DEFINE and CONFIRM studies showed that, after two years, Tecfidera reduced relapses by 56%, and disability progression by 78%, at 12 weeks compared with placebo in newly-diagnosed people with RRMS who had highly active disease but had not previously been treated with a DMT. [Abstract: P7.228] Additional data from the DEFINE, CONFIRM and ENDORSE studies showed sustained efficacy with Tecfidera over five years in people with RRMS who had previously been treated with an interferon or glatiramer acetate. [Abstract: P7.229]

Fingolimod (Gilenya) – analysis of FREEDOMS trials for NEDA

Sub-group analysis of the phase III FREEDOMS/FREEDOMS II trials showed that the group taking fingolimod were sixtimes more likely to achieve “no evidence of disease activity” (NEDA4) than the placebo group. NEDA4 is based on four key measures of relapsing MS - no relapses, no new MRI lesions, no MS-related brain volume loss and no disability progression. [Abstract: P3.246]

Interim results were reported from the first year of ATTAIN, a two-year extension study of the phase III ADVANCE study, where Plegridy was administered subcutaneously every two weeks. These trials looked at NEDA, defined as no evidence of disease activity on clinical and MRI measures, indicating no relapses and no onset of 24-week disability progression, no gadolinium-enhancing lesions, and no new or enlarging T2-hyperintense lesions. The percentage of people who achieved NEDA in the Plegridy treatment group was 35% in year one and 54% in year two of the ADVANCE study, and 49% percent in year one of the ATTAIN study, demonstrating continued efficacy over three years. [Abstracts: S4.002 and P7.266]

Stopping DMTs – effect in people with stable MS

This study followed 181 people on the MSBase registry for at least three years after they stopped taking disease modifying therapy.

All were aged 40 or older, had experienced no relapses and reported stable disability progression, measured by EDSS scores, for at least five years, and had been taking DMTs for at least three years.

After discontinuing medication, 24% experienced a clinician-reported relapse, 32% sustained three-month disability progression, and 11% recorded both relapses and disability progression. 42% chose to go back onto treatment within two years. [Abstract: P5.192]

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Other research news Prescribe Lyrica not generic pregabalin for neuropathic pain The patent for Lyrica as a treatment for epilepsy and generalised anxiety disorder expired in July 2014 allowing health professionals to prescribe generic versions instead.

However, the manufacturer still holds a “second medical use” patent for the use of pregabalin in the treatment of peripheral and central neuropathic pain, which will expire in July 2017. A “second medical use” patent is one that relates to a new medical use for a known compound.

After a High Court ruling, the NHS was told it must not promote generic pregabalin for pain. As a result NHS England issued guidance to GPs and pharmacists saying that “so far as reasonably possible” pregabalin should only be prescribed for the treatment of neuropathic pain under the brand name

Lyrica. Failing to do so may leave prescribers open to litigation.

Ref: BMJ 2015; 350: h1724.

Read more about pregabalin in the A to Z of MS: www.mstrust.org.uk/atoz

Fingolimod (Gilenya) eligibility extended in Scotland The Scottish Medicines Consortium (SMC), which issues guidance on whether treatments should be funded by NHS Scotland, has announced that fingolimod can now be prescribed as a second line treatment for people who are continuing to have relapses despite taking any one of the disease modifying treatments.

Formerly, fingolimod was approved for use by NHS Scotland only for people who continued to have relapses while taking one of the beta interferon drugs.

This change affects prescribing for NHS

Scotland only; prescribing policies for the NHS in England, Wales and Northern Ireland are not affected.

Read more about fingolimod in the A to Z of MS: www.mstrust.org.uk/atoz

Miconazole and clobetasol may have a role in myelin repair The media made much of early studies that showed that miconazole, an anti-fungal which is the basis of many topical treatments for athlete’s foot, and clobetasol, a topical steroid used to treat eczema, may be potential therapies to repair myelin in people with MS. Initially, over 700 existing drugs were screened to see if they could stimulate a type of stem cell, known as oligodendrocyte progenitor cells, to develop into oligodendrocytes, the cells which are responsible for making myelin.

The drugs were initially tested in mouse cells, where the two treatments were shown to increase the number of oligodendrocytes and enhance remyelination.

The drugs were then tested in a mouse model of multiple sclerosis, where an increase in the production of myelin was seen as well as a reduction in the severity of the MS-like disease. The researchers went on to test them in human cells in culture, where again they were shown to increase the number of myelinproducing cells. www.mstrust.org.uk

Although the results are promising, this research is at a very early stage. The researchers strongly caution against people trying to selfmedicate with the drugs in their current form.

The press coverage reporting the treatments as a ‘cure’, or ‘reversing’ or ‘stopping’ MS is somewhat premature not least because the drugs would need to be developed into forms that can be taken orally.

Ref: Nature (2015) doi:10.1038/nature14335.

Read more about remyelination in the A to Z of MS: www.mstrust.org.uk/atoz

Benefit and Risk Information for Medication in Multiple Sclerosis (BRIMMS) Information about the risks and benefits of MS medication is becoming increasingly complex with the advent of new emerging medications that have more significant risk profiles. This poses major challenges to patients to understand and recall complex statistical information, but is essential for informed consent to treatment and effective self-management of MS. In a collaboration between Royal Holloway, University of London and King’s College Hospital NHS Foundation Trust, a protocol is being designed to present risk and benefit information about MS medications which is more helpful and accessible for people with MS. Part of this work will be to collect information from MS nurses about their experiences of communicating MS medication information to people with MS.

If you would like to help, please fill in the anonymous survey at http://tinyurl.com/ MS-nurse-survey Please feel free to pass on this link to other MS nurses who may be interested in participating.

For further information about this study, please contact Gurpreet Reen at Gurpreet.Reen.2014@live.rhul.ac.uk

Lost to follow up? Finding people with MS in need of services Geraldine Mynors and Jane Suppiah, MS Trust GEMSS Facilitators

Introduction Recent work by the MS Trust has highlighted the shortfall of MS specialist nurses across the UK1. The lack of a comprehensive register of people with MS, or robust area-level prevalence data, makes it impossible to know exactly how many people aren’t in regular contact with an MS nurse, neurologist or other MS specialist, but the 16 teams participating in the Generating Evidence in Multiple Sclerosis Services (GEMSS) project have, in many cases, identified that their caseloads fall short of the estimated number of people with MS in their local area. There can be little doubt that there are many people with MS across the UK who are not receiving, as a minimum, the comprehensive annual review by an MS specialist recommended by NICE2. In this article, we look at recent approaches taken in two areas of the UK to find these ‘missing’ patients via their GP practices and identify their needs.

Glasgow: the MS Support Worker model NHS Greater Glasgow and Clyde (NHS GGC) covers a large conurbation of 1.2 million people – with an estimated 2,600 people with MS1. The Regional Multiple Sclerosis Service is based at the Southern General Hospital in Glasgow and covers the West of Scotland, with approximately 4,000 patients on the caseload of whom 1,100 are on disease modifying therapies (DMTs). The team consists of five MS specialist neurologists, three full time MS specialist nurses and two part time physiotherapists.

In 2005, it was identified that despite this specialist provision, many people with MS in Greater Glasgow had potential unmet need and may have lost contact with services. As a response, the MS service was established within Greater Glasgow Primary Care as part of a Chronic Disease Management programme, developed for a number of diseases in the area.

To ensure equity across the Board area, the service has developed and extended to cover Greater Glasgow and Clyde and now employs three dedicated MS support workers whose role is to go into GP practices around Glasgow, identify everyone on the practice Call: 01462 476700

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register with MS and then invite them (via the practice) for an annual review meeting, either at the surgery or in their own home if necessary. The team uses a checklist approach to consultations, utilising a standardised bespoke assessment tool, incorporating the Guys Neurological Disability Scale3, as a means of highlighting issues for further consideration. Issues covered include not only health issues around MS symptoms such as mobility, sexual dysfunction, bladder and bowel issues, but also social concerns including housing, family and carer support, employment and welfare benefits.

To ensure positive outcomes for people, the team ensures an effective signposting role: they have links to many NHS, council and third sector services around Greater Glasgow and Clyde and can put people in touch with them. Crucially, they are able to refer directly back into the specialist MS service as necessary. The team has developed considerable expertise – before joining it ten years ago, Douglas Ross, the longest standing member, worked at a housing association providing long term accommodation for people with progressive MS. Louise Murdoch, another team member, had previously worked in a community physical disability team.

With around 900 GPs in NHS GGC, each one will typically have only 2-3 people with MS on their list and their knowledge of MS and the services available is variable.

The service aims to invite everyone with MS to a review once a year. Some decline the offer, but according to Douglas Ross, around 60% who are invited attend on the first or second occasion. However, as he reports, “We still come across a lot of people who have no help or support. Sometimes they themselves have given up and think there’s no point as nothing can be done for them. Some are stuck at home and have no way to get to a hospital appointment. People tell us ‘My bladder isn’t working, I’m falling once a week, but I haven’t been to see the doctor’. Some were diagnosed many years ago when much less was available.

Our role is to get in to see them, encourage them to be as proactive as possible and show them that things aren’t necessarily going to get worse. Often things can be done to help in all kinds of ways.”

The team see themselves as a complement to the specialist clinical services provided at the Southern General, and many people attend both services. “We are not a substitute for an MS specialist nurse and we don’t give clinical www.mstrust.org.uk

advice”, says Douglas Ross. “If people want to see an MS nurse, they should always have the opportunity to do that.” However, it’s clear that in as large an area as NHS GGC, and a hospital based MSSN team covering such a large population, a service like this provides a valuable safety net.

Northumbria: using a survey to identify unmet need Jane Metcalfe and Miriam Foster are community based MS specialist nurses in Northumbria, one of England’s most rural counties. They see most people on their caseload in outreach clinics or in their own homes. Two out of three people on their caseload have progressive MS. The caseload has grown by around 20% a year since the service was established in 2006 and now stands at 375. The team was one of the five that participated in the first round of the MS Trust GEMSS programme, evaluating their service over the course of 2012/13. One of the issues uncovered through the programme was that the service caseload is much lower than the estimated number of people with MS in Northumbria. This was confirmed through an information request submitted in April 2012 to all Northumbrian GPs for the number of registered patients with an MS diagnosis. All 45 GP practices responded, reporting a total of 797 people with a recorded diagnosis of MS. Therefore, in 2013, with the support of the GEMSS facilitators, the team sent out a survey via GPs to people with MS not registered with the service. The main aims of the survey were to: • find out where pwMS are accessing specialist support for their MS if not from the Northumbria MSSNs • build up a picture of how specialist services are being used across Northumbria in order to establish if there are groups who are under-served • build awareness amongst GPs and pwMS of the Northumbria MSSN service and provide contact details for the service.

Thirteen out of 47 GP practices agreed to take part in the survey. These practices between them have 286 registered patients with MS, representing just over a third of pwMS in the whole county, and they sent out 160 surveys to people not registered with the Northumbria MSSN service. Sixty-two

people responded, a response rate of 39%.

The first finding was that more than half (58%) of respondents had seen an MS specialist in the last year and, for the vast majority, this was a neurologist or MS specialist nurse working in another service.

Three quarters of these people were satisfied with the amount of contact they had received, although 23% would have liked more (a proportion which is consistent with the patient survey findings from the wider group of GEMSS teams).

However, 42% of respondents to the survey had not had contact with an MS specialist in the past year. These 25 respondents account for around 9% of the pwMS registered with the practices that took part in the survey.

Furthermore, four out of five of these respondents said that they’d had no contact with any health professional about their MS in the past year, even though 84% of them reported that they’d experienced one or more troubling MS-related symptom in the last three months and nearly half had experienced four or more symptoms, as shown in figure 1.

Notably, nearly half these respondents (46%) said that they didn’t know what type of MS they had (compared to 13% of pwMS who responded to the GEMSS patient survey in 2014), revealing that they may not have access to sufficient information about the condition and their own health.

Clearly there will be people in this group that are effectively self-managing their MS and are knowledgeable about what’s on

offer should they need it. Indeed, one-third of this group remain in work, and a similar proportion report that they have relapsing remitting MS, the non-progressive stage of MS. However, the survey found a group of people that are not engaged in services and that have a level of disability and range of symptoms which contact with MS specialist professionals could help them to manage.

These were mainly older people with MS who were diagnosed many years ago (nearly half more than 20 years ago), when MSSN services were not available and who may not be aware of the range of support and expertise that MSSNs can provide. 28% of those that hadn’t had contact with a specialist in the last year said that this wasn’t satisfactory and that they wanted more contact, and 20% had had a hospital admission.

Jane Metcalfe, MSSN with the Northumbria MS specialist nurse service said, “It’s been a really useful piece of work to do. Our fear was that there would be a really large group of people not engaged in any specialist services and that this would result in a deluge of new referrals to our service. It’s good to know that is not the case and that if they aren’t seeing us, most people are under the care of hospital services in Newcastle or Cumbria.

“But there are up to 10% of people with MS that aren’t in contact with any specialist service. That’s around 80 people with MS in our county and most of them are experiencing symptoms that could be alleviated with

Figure 1. Respondents’ reported symptoms (respondents who had not seen an MS specialist in the past year) Below are a list of problems commonly associated with MS. Please tell us if you’ve experienced difficulty managing any of these symptoms in the last 3 months.

81%

76% 52%

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specialist input. We’ll definitely be sharing the results of this survey with GPs and our specialist colleagues at the Royal Victoria Infirmary and Walkergate Park Rehabilitation Centre, as well as discussing with them what can be done to reach these people.”

Conclusion There are many reasons why people with MS may be out of contact with MS specialist services; some were diagnosed before the advent of DMTs or specialist nurses and may effectively have been discharged from neurology services in the belief that little could be done for them, a situation which thankfully has changed enormously over the past two decades. Others may have disengaged from services at a time when their MS was not troubling them significantly, and now don’t

know how much specialist support could help. In some areas, MSSN services are thinly stretched and simply don’t have the resources to proactively review everyone in their area.

The results of these two projects show how important it is that specialist services reach out to find these people, assess their needs and explain what is available. In the absence of a usable MS register, joint working with GP practices can be a valuable approach to enable this to happen.

References: 1. Mynors G, Bowen A. MS specialist nursing in the UK 2014: the case for equitable provision. Letchworth: MS Trust; 2014.

2. National Institute for Health and Care Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care (Clinical Guideline 186). London: NICE; 2014.

3. Sharrack B, Hughes RA. The Guy’s Neurological Disability Scale (GNDS): a new disability measure for multiple sclerosis. Mult Scler 1999; 5(4): 223-33.

Disease modifying drug monitoring for patients with multiple sclerosis – use of iPads to improve access Heledd Tomos, Physiotherapist; Lynne Watson, MS Specialist Physiotherapist; Susan Mullock, Clinical Nurse Specialist MS; Owen Pearson, Consultant Neurologist; Morriston Hospital, Swansea

Abstract Individuals with multiple sclerosis (MS) who live in rural areas may experience difficulties in accessing care. Telemedicine is being increasingly utilised to improve the delivery of healthcare. The use of a tablet device was piloted to monitor disease modifying drugs (DMTs) in MS with strict information governance procedures, and the outcomes for telemedicine were evaluated. There were time and travel savings for patients as well as clinicians, and the results demonstrated excellent patient satisfaction with 100% of individuals expressing a preference for telemedicine. Consequently, we found that DMT monitoring reviews via a tablet device is a viable option for patient consultations.

Introduction There are an estimated 100,000 people in the UK with MS which is most commonly diagnosed between the ages of 20-401.

Approximately 85% of MS patients are diagnosed with having the relapsing remitting type of MS (RRMS)2. The therapeutic aim of MS disease modifying drugs are to reduce inflammation and thus lower the frequency of relapses, decrease the lasting effects of relapses, and to potentially decrease disability. www.mstrust.org.uk

The majority of people diagnosed with MS are in employment, but half leave their jobs within a decade of diagnosis3.

The South West Wales Multiple Sclerosis (MS) Team provides DMT monitoring for patients with RRMS. It is a regional service covering two health boards which serve a population of 1 million and a vast geographical area of nearly 7,000 square kilometres. Patients face long travel times and greater challenges due to their clinical condition and poor road infrastructure to

the west of Wales. The patients on DMTs have increased clinic appointments due to the monitoring requirements of the drugs and these patients therefore have to travel to clinic appointments regularly and take time off work to attend clinic.

It has been widely reported that telecommunication technologies can be used to facilitate the delivery of healthcare to patients living in remote areas and it should be considered for implementation as part of the management of chronic neurological diseases4, 5. The use of iPads for telemedicine has been piloted previously and it was suggested that it is a viable option for secure videoconferencing6. The aims of this study were: • to evaluate the use of iPads for telemedicine DMT monitoring in MS patients • to offer patients telemedicine consultation as an alternative to traditional clinic consultations • to improve overall patient experience by improving patient access and service efficiency.

Method Protocols were developed to satisfy strict information governance issues and to minimise security risks. The criteria for patient selection were patients: • due for their DMT review with the MS specialist nurse between June – October 2014 • established on DMT treatment • with their own equipment for the use of telemedicine • with previous experience of FaceTime or Skype • with adequate broadband speed.

Seven patients were identified for this pilot.

These patients gave their informed consent for telemedicine reviews. DMT reviews were performed via telemedicine with the patient at home or in work using their own tablet, phone or laptop and the MS specialist nurse at the office base using an iPad. Patients were given the choice of software, either FaceTime or Skype, for the consultation. Blood test request forms were sent by post prior to the appointment. Data was collected for time and travel implications for patient and clinician.

A patient satisfaction questionnaire was devised and was distributed online using Survey Monkey.

Results A cohort of seven females with median age of 45 (range 34-52) and median EDSS 4.0 (range 1.5 – 6.5) were recruited. They were on a range of first line injectable DMT treatments with one patient on a second line oral treatment. These patients had been on MS disease modifying treatments for a median time of 71 months (range 11142 months). Two patients were currently on treatment holidays for personal reasons.

On average patients saved 21 miles and 50 minutes of travel time (Table 1). The clinician on average saved 54 miles and 80 minutes of travel time as they avoided travelling to satellite hospitals. Consultations via telemedicine were on average 18 minutes long compared to 30 minutes for traditional consultations. All patients used Apple equipment for the consultation and only one patient chose to use Skype. Two patients had their consultation whilst at work.

Table 1. Patient demographics with results of each consultation Patient Sex Age EDSS

Current DMT

Initial DMT Equipment Software start date

Place

Appt. time (mins)

Patient travel saved Time Miles (mins)

A

F

41

2.0

Gilenya

Feb 2005

iPad

FaceTime Home

10

24

60

B

F

44

6.5

Avonex

Dec 2002

iPad

FaceTime Home

28

32

90

C

F

46

3.0

Rebif

Dec 2012

iMac

FaceTime Home

8

6

30

D

F

50

6.0

Copaxone

Sept 2013

iPad

FaceTime Home

16

46

80

E

F

52

6.5

Copaxone

Apr 2008

iPad

Home

30

12

30

F

F

34

1.5

Rebif

Oct 2008

iPhone

FaceTime Work

15

5

15

G

F

46

4.0

Copaxone

Dec 2009

iPhone

FaceTime Work

19

20

40

Skype

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The patient satisfaction questionnaire had a high return rate of 85%. All patients were sent an email post-consultation with a link to the Survey Monkey questionnaire.

100% of patients who responded were Very satisfied with their ability to understand the advice/recommendation given; convenience of access to this appointment; overall quality of care provided; and overall telemedicine consultation experience. 67% of patients were Very satisfied and 33% were Satisfied with the quality of the visual image and the audio sound. 83% of patients were Very satisfied and 17% were Satisfied with their ability to talk freely. The comments from the questionnaires were analysed thematically (Table 2). All patients reported that they would be happy to use telemedicine for future appointments.

Table 2.

Thematic comments

analysis

Theme

of

patient

No. of comments

minute appointments. Patients were very satisfied with the service offered and reported several benefits.

There may be limitations when assessing injection site reactions as it will depend on the quality of the camera, but this wasn’t an issue during this pilot. This type of consultation may not be suitable for DMT injection teaching, but with the development of first line oral and intravenous treatments this may be less of an issue in the future. Also, telemedicine consultation is highly dependent on the patient having the appropriate equipment and suitable broadband speed to allow a consultation. This pilot had a small cohort of patients but showed positive outcomes which would encourage further work.

In conclusion, DMT monitoring reviews via iPads is a viable option for patient consultations. All DMT patients could be given the choice of attending clinic or having a review using telemedicine. Future work is required to look at the viability of consultantled consultation via telemedicine.

No parking issues

3

Excellent service

2

Acknowledgements

Time saving

2

Total saving

2

Effective consultation

2

Able to stay in work

1

We would like to thank the South West Wales MS Team patients; Rehabilitation Engineering Unit, ABMUHB; MS Society; Swansea University and MS Register; IT Department, ABMUHB.

The Net Promoter Score (NPS) asks a simple question ‘How likely is it that you would recommend this service to a friend or colleague?’7 and patients score the question on a scale of 0 – 10 with 0 ‘Not at all likely’ and 10 ‘Extremely likely’. To calculate the NPS you subtract the percentage of respondents who gave a score between 0-6 from the percentage who gave a score of 9 or 10, therefore it is possible to get a score range from -100 to +100. The score for this pilot was +100 which showed excellent patient satisfaction.

Discussion There were significant savings in patient and clinician time and travel implications. These consultations avoided using prime clinic space in regional and satellite hospitals. There was improved efficiency and in the future these DMT clinic appointments could be allocated 20 minute slots rather than the current 30 www.mstrust.org.uk

References: 1. Pugliatti M, Rosati G, Carton H, et al. The epidemiology of multiple sclerosis in Europe. Eur J Neurol 2006; 13: 700-22.

2. Richards RG, Sampson FC, Beard SM, Tappenden P. A review of the natural history and epidemiology of multiple sclerosis: implications for resource allocation and health economic models. Health Technol Assess 2002; 6(10): 1-73.

3. Naci H, Fleurence R, Birt J, Duhiq A. Economic burden of multiple sclerosis: a systematic review of the literature.

Pharmacoeconomics 2010; 28(5): 363-79.

4. Maheu M, Whitten P, Allen A. E-Health, telehealth, and telemedicine: a guide to start up and success. New York, NY: Jossey-Bass; 2001.

5. Zissman K, Leijbkowicz I, Miller A. Telemedicine for multiple sclerosis patients: assessment using Health Value Compass. Mult Scler 2012; 18(4): 472-80.

6. Voccola D, Lawlor B, Scahntz P, et al. Using a novel telemedicine aid to communicate research findings.

Proceedings of the 141st American Public Health Association Annual Meeting; 2013 Nov 2-6; Boston, USA. 7. Reichheld F. The one number you need to grow. Harvard Business Review 2003; 81(12): 46-54.

‘To live every moment’: exploring the concept of psychosocial flourishing in a group of single women with multiple sclerosis Jane Stuchbury, MSc Student, School of Psychology, University of East London; Kate Hefferon, Senior Lecturer and Programme Leader MSc in Applied Positive Psychology, School of Psychology, University of East London.

Introduction Research examining the psychosocial aspects of living with multiple sclerosis (MS) has, to date, predominately focused on coping with the negative aspects of living with this chronic condition: depression, disability, alleviation of symptoms and unsuccessful adaptation. Relatively little research has been conducted on those people with MS (pwMS) who, despite the many challenges they face, state that they live a good, happy life and consider themselves to be flourishing.

In recent years, there has been more focus on qualitative research examining the positive psychosocial adjustments pwMS make to help them live with the challenges their disease presents. Areas investigated include the achievement of an acceptable quality of life1, adjustment at early stages2, coping3, psychosocial adjustment4, meaning of feeling well5, acceptance6, meaning7, benefit finding8 and post traumatic growth9.

The main aim of this piece of work was to build on these studies, by exploring and presenting the lived experience of single women living with MS who considered themselves to be living flourishing lives and to examine the processes, if any, by which this was achieved.

Method The participants were five single women living in London and the surrounding area Main theme 1. What sort of life is this?

2. Managing the self: who we are, or what we do 3. Getting to flourishing

who had self-selected themselves as living what they deemed to be a flourishing life.

Assistance in recruitment was given by the MS Society, who placed a notice on the research page of their website.

Participants were interviewed and recorded, with six open ended questions posed with non-directive prompts. The interviews were then transcribed verbatim and analysed using interpretative phenomenological analysis (IPA)10. IPA was chosen as the analytics paradigm for its flexibility and ability to reflect the richness and complexity of the participant’s lived experience.

Results From the data collected, three main research themes were identified. Each of the main themes contained three further related subthemes (see table below).

Sub theme 1.1. Fear and loss: ‘I thought it was the end of the world’ 1.2. Unpredictability: ‘You don’t know what’s around the corner’ 1.3. Turning points: ‘The trigger to change things’ 2.1. Continuity and change: ‘I’ll just get on...’

2.2. The single self: ‘Alone but not alone’ 2.3. Valued roles: ‘Things that bring joy’ 3.1. The importance of goals: ‘Things to look forward to’ 3.2. Growth: ‘Stronger than before’ 3.3. What flourishing means to me: ‘Happy inside’ Call: 01462 476700

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What sort of life is this?

At the beginning of the interview, all participants gave a full narrative account of their ‘diagnosis story’ despite not being directly asked about this. It appeared that they wanted to ‘set the scene’ before recounting their experiences and showed a need for their story to be heard. The expression of fear and loss, and the unpredictability of living with a fluctuating chronic illness were voiced. Four out of five participants recounted reaching a turning point, which occurred after varying amounts of time, following their diagnosis.

Fear and loss

Fear and loss were commonly experienced following diagnosis and this would often be projected onto how the women saw their lives developing in the future.

“Initially, I thought it was the end of the world…” Sheila* Such negative future projections were often not based on any direct experience, although one woman reported the loss of a relationship which she directly attributed to her MS status.

Participants seemed able to focus on gains, as well as acknowledge losses.

Unpredictability

All participants referred to the uncertainty and unpredictability inherent in living with MS as part of the fear they experienced.

However, for most it was also seen as a positive motivating factor in being able to move forward with their lives and seemed to encourage a mindful philosophy of living in the moment.

“You never know how things are going to be from one day to another but that doesn’t stop me at all.” Amy Their consideration of uncertainty as a motivating factor, as well as a source of fear, seems to have been a major contributing factor in allowing them to decide to live their lives as fully as possible.

Turning points

Most participants described reaching a turning point after which they could make decisions about how to deal positively with their diagnosis, this occurred at varying times post-diagnosis for each individual.

Arriving at this instant in time seemed to be an important factor in the acceptance of their

www.mstrust.org.uk

MS diagnosis and ability to move forward.

This acknowledgment often came after experiencing a difficult time, such as an acute relapse, or when returning to a valued role, either personal or professional.

Even the most distressing experiences could seem to hold an important message. One participant described her temporary loss of sight.

“When you suddenly don’t see anything…you really see things completely differently, and you evaluate situations and people.” Amy

Managing the self The participants gave accounts of how they managed their sense of self, and what it was that led them to feel they were living a flourishing life. It was their ability to demonstrate stable yet flexible responses to trauma, and their ability to bounce back from adversity that helped them to consider themselves as flourishing.

Continuity and change

The participants recognised the importance of accepting their diagnosis and carrying on with life as normal, or adapting to find a ‘new normal’ that was acceptable to them. One participant described how she adapted her great passion for cycle touring.

“I did think that my cycling days were over but with this electric bike, it’s opened the doors again.” Sheila

The single self

The participants held varying opinions about their single relationship status from negative, to reflection on how they had felt constrained in previous relationships and were more self reliant as a single woman. One felt she became too dependent on a previous partner.

“So maybe I was being made to be a bit more disabled than I needed to be.” Sheila As there have been no specific published studies focusing on the experience of single pwMS, it is difficult to assess whether the experiences in this study are representative.

Their single status did not, however, appear to adversely affect their psychological resources and strategies for coping with MS.

Valued roles

By maintaining life roles they valued: professional, studying, family and hobbies; the participants were able to avoid the ‘spoiled identity’ described by Charmaz11. They were

able to integrate MS as part of their existing sense of self, or were able to see it as part of the creation of a new, positive self-perception.

Getting to flourishing Most participants described their experience of living a flourishing life with MS in terms of a path or journey, but a journey with no end point and one requiring constant renegotiation. Their own concepts of what constituted flourishing differed and although it was not seen as a desired end point, did form part of their post-diagnosis personal growth. The underlying outcome was the same: a strong feeling that they are happy and living well in the face of immense challenge.

The importance of goals

The participants emphasised that focusing on future goals was an important part of their experience of flourishing. Such goals could be professional, educational, family related or engagement in sport or leisure. Their feelings of engagement and control, engendered by the pursuit of their goals, assumed greater significance in being able to adopt a positive future perspective.

“I feel that having the diagnosis just made me open my eyes a bit more…being able to achieve certain goals feels, oh, I can do this!” Sheila

Growth and resilience

Participants reported personal growth, finding benefits and described demonstrating resilience in dealing with often very serious and distressing MS symptoms. When reflecting on this they were often able to find a positive effect in what would commonly have been considered as a wholly negative experience.

“I’m stronger than before, I feel more confident, I feel more independent.” Amy

A personal meaning

It was clear that flourishing meant slightly different things to the participants. The paths they took differed but they all stated they were living well with MS and that flourishing, for them, was creating a good, happy life around a challenging experience they did not choose. What could have been a barrier to achievement instead served as a call to live life to the full and to find new appreciation in the smallest aspects of their lives.

“It’s a roller coaster ride…I’m still here, I’m still alive…there’s light at the end of the tunnel.” Karen

Conclusion

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No previous published research studies had considered the experience of living a flourishing life with MS, nor had single women with MS been used as a research cohort. This study, therefore, gave a voice to previously overlooked aspects of living with MS. Flourishing was seen as an interplay of living well with illness, acceptance, assimilation, coping with adversity, self-created positive experiences, benefit finding, personal growth and post traumatic growth over time. This has important implications for how pwMS view their own ability to thrive/flourish and subsequently how they are perceived by those around them – including health professionals.

As the research design intended to understand the lived experience of Flourishing with MS, the cohort used was a small, homogeneous group. Generalisation was not the main aim and therefore it is not possible to draw any general conclusions from the results. However, this research can be seen as a starting point for further research on using uncertainty as a motivating force, the importance of support, and form the basis for future wellbeing interventions for pwMS. *Names have been changed to protect the identity of the individuals involved in the study.

References: 1. Reynolds F, Prior S. “Sticking jewels in your life”: exploring women’s strategies for negotiating an acceptable quality of life with multiple sclerosis. Qual Health Res 2003; 13(9): 1225-51.

2. Dennison L, Yardley L, Devereux A, Moss-Morris R. Experiences of adjusting to early stage multiple sclerosis. J Health Psychol 2010; 16(3): 478-88.

3. Malcomson KS, Lowe-Strong AS, Dunwoody L. What can we learn from the personal insights of individuals living and coping with multiple sclerosis. Disabil Rehabil 2008; 30(9): 662-74.

4. Irvine H, Davidson C, Hoy K, Lowe-Strong A. Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition. Disabil Rehabil 2009; 31(8): 599-606.

5. Olsson M, Skär L, Söderberg S. Meanings of feeling well for women with multiple sclerosis. Qual Health Res 2010; 20(9): 1254-61.

6. Pakenham KI, Fleming M. Relations between acceptance of multiple sclerosis and positive and negative adjustments.

Psychol Health 2011; 26(10): 1292-309.

7. Russell CS, White MB, White CP. Why me? Why now?

Why MS?: Making meaning and perceived quality of life in a Midwestern sample of patients with multiple sclerosis.

Fam Syst Health 2006; 24(1): 65-81.

8. Pakenham KI. Benefit finding in multiple sclerosis and associations with positive and negative outcomes. Health Psychol 2005; 24(2): 123-32.

9. Pakenham KI. The nature of benefit-finding in multiple sclerosis (MS). Psychol Health Med 2007; 12(2): 190-6.

10. Mohr DC, Dick LP, Russo D, et al. The psychosocial impact of multiple sclerosis: exploring the patient’s perspective. Health Psychol 1999; 18(4): 376-82.

11. Charmaz K. Good days, bad days: the self in chronic illness and time. New Brunswick, NJ: Rutgers University Press; 1991.

Call: 01462 476700

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Supporting children when a parent has MS: why it’s important, why we often hold reservations about this work and some ways to overcome these Rachel Tam, Consultant Clinical Neuropsychologist, Oxford Centre for Enablement, Oxford; Audrey Daisley, Consultant Clinical Neuropsychologist, Oxford Centre for Enablement, Oxford.

Introduction Over the last decade, there has been an increased awareness of the needs of children when a family member has a long term neurological condition such as multiple sclerosis (MS). The publication of the National Service Framework for Long Term Conditions1 and the 2003 NICE Clinical Guideline for MS2 were instrumental in advocating that professionals should adopt a whole family approach and routinely consider the needs of children in families affected by MS and other long term conditions. In line with this, there has been a noticeable increase in the number of publications available about MS aimed at children. However, we have found through our own research and clinical experience as clinical neuropsychologists working with families affected by long term conditions, that few professionals routinely engage in such work and are often unaware of the pockets of good practice that already exist. Given that the majority of professionals supporting families affected by MS will typically have had an adult focus to their training, it is understandable that they may hold anxieties about working with the children of their patients when issues arise. During conversations at the 2014 Rehabilitation in MS (RIMS) conference, the authors were struck by how these themes continue to emerge. Recent systematic reviews of the existing literature have also highlighted the surprising scarcity of work in this area3, 4.

This article summarises key themes and reflections drawn from the existing literature, our experiences of working with families and our research in this area. It outlines: • the importance of considering children’s needs • professionals’ experiences and attitudes towards such work • possible solutions to identified barriers.

The importance of considering children’s needs MS is a condition that can affect many aspects of family life. It is recognised that children, due in part to their age and developmental level, may have particular difficulty understanding and coping with the challenges presented – including the condition’s unpredictability, associated disruptions in family roles and www.mstrust.org.uk

everyday routines, and ‘invisible’ symptoms of fatigue and emotional distress5, 6.

Although existing research on the effects of parental MS is mixed and has a number of shortcomings, it does suggest that this group of children may be more vulnerable than their peers to a range of psychosocial difficulties such as increased stress, anxiety and social isolation4, 7 . The relationship between parental MS and child wellbeing is not a simple one. However, parental illness does not necessarily cause child problems as many factors influence adjustment, for example children who use active coping strategies such as problem solving, seeking information and social support, and who have a well parent who is adjusting positively to the situation are said to cope better with their parent’s MS8.

The relationship between information provision and adjustment also emerges frequently in the literature. Recent systematic reviews3, 4 suggest that limited knowledge and understanding of MS is associated with

poorer adjustment in children, and provision of information about MS and what to expect during different stages may reduce emotional distress. These findings are consistent with clinical findings, we know that if information is not available and tailored to the child (both to their developmental stage, their particular questions/issues, and parental illness context) they may have difficulty engaging in the protective strategies outlined and any misconceptions held will remain unchallenged.

Professionals’ experiences and attitudes towards child-focused work A systematic review by Bogosian et al9 highlights the lack of interventions for this group of children. Only one intervention study10 is referred to in recent reviews and both Horner3 and Razaz4 conclude that much more intervention work is needed. While we are aware of a number of professionals who work with children and have conducted innovative work in this area, such as Mutch and Ridley’s ‘MS in the Family’ workshops11, and the work of individuals such as Julia Segal12 and Jo Johnson13, such work does not appear to be adopted widely within services.

Very little has been written about professionals’ feelings towards working with child relatives and the potential barriers that exist. Webster and Daisley14, 15 investigated these issues in a relevant clinical context, adult acquired brain injury, and identified a number of contextual, professional and personal factors that explained the paucity of work with children of these patients. This gave us a useful starting point for trying to understand why a similar situation may have developed in MS services, and led to a large study by Gibbons16 surveying professionals’ attitudes and experiences of working with children when a family member has MS. Over 100 questionnaires were sent out to a range of professionals working with adults with MS, of which 80% were returned. The main findings were that all participants had a very favourable attitude towards supporting children, but the majority were not doing this. Just over 10% reported that they were undertaking 15 minutes or more work addressing children’s issues over the previous month and only 25% said they intended to do more of this work in the future. The

main reasons identified for not working with children were: • contextual – lack of support from colleagues and overall work culture • practical – lack of time, money, and access to training and supervision • high levels of anxiety about this work.

Possible solutions It is indisputable that considering the needs of children is important, yet despite having access to more child-specific resources over recent years it seems that many professionals still feel unsupported, unskilled and worried about getting it right. So what can help?

Following our study, a professionals’ resource pack was produced for all participants17. This pack provided detailed information on the available literature and resources in this area, and gave advice on initiating work with child relatives. We appreciate that in the current economic climate it is not always possible to take on new areas of work. However, we would argue that making small changes to your existing working practice, as outlined below, and becoming more ‘child-aware’ can help overcome some of the barriers identified and make a significant difference to families: • provide a child-focus to your work by routinely asking whether people with MS accessing your service have children • make it a normal part of your practice to routinely raise questions with parents about how children are doing and whether they might like more information • ensure any information provided is honest, age-appropriate and guided by the child’s questions and concerns. Many excellent resources currently exist to aid this process, for example: Kids’ Guide to MS18, The young person’s guide to MS19 and Our mum makes the best cakes13. There are also many helpful websites aimed at children and young people affected by MS in the family such as: www.youngms.org.uk • supporting children’s adjustment and wellbeing does not necessarily mean working directly with the child. It may be more appropriate to work with the parents, or others closely involved, with a focus on normalising and describing possible reactions in children. Working towards goals that enhance parenting or which aid a child’s adjustment, for example enhancing their social networks/protecting time with friends, can be highly motivating for parents Call: 01462 476700

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• if you have an interest in developing your service you might consider interventions such as the excellent MS in the Family workshops11 which address information and social support needs directly. This oneday programme, which we have adapted and evolved within our service, has been well received by parents and children • networking with existing children’s services and other interested professionals in your area may provide a forum to discuss children’s issues, helping to increase confidence and address training and supervision needs • know when to seek specialist advice.

Although the majority of children will not need specialist input, there may be a small number who do experience emotional or behavioural problems warranting more specialist intervention. Routinely asking questions about children is key in identifying those who need more help. It is helpful to establish links with local child and adolescent mental health services and know how to refer to them.

What next?

We would welcome contact from MS professionals who are working with families to share their experiences so that we can build a more accurate overview of current working practices.

Contact details:

Rachel Tams Department of Clinical Neuropsychology Oxford Centre for Enablement, Oxford University Hospitals NHS Trust, Windmill Road, Oxford, OX3 7HE. Email: Rachel.tams@ouh.nhs.uk

www.mstrust.org.uk

References: 1. Department of Health. The National Service Framework for Long-term Conditions. London: HMSO; 2005.

2. National Institute of Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. London: DH; 2003.

3. Horner R. Interventions for children coping with parental MS: a systematic review. J Am Assoc Nurse Pract 2013; 25(6): 309-13.

4. Razaz N, Nourian R, Marrie RA, et al. Children and adolescents adjustment to parental multiple sclerosis: a systematic review. BMC Neurol 2014; 14: 107.

5. Cross T, Rintell D. Children’s perceptions of parental MS. Psychol Health Med 1999; 4(4): 355-60.

6. Mutch K. Information for young people when multiple sclerosis enters the family. B J Nurs 2005; 14(14): 758-60.

7. Packenham KI, Cox S. The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment over time. Psychol Health 2012; 27(3): 324-46.

8. Bogosian A, Moss-Morris R, Bishop FL, Hadwin J. How do adolescents adjust to their parent’s multiple sclerosis? An interview study. Br J Health Psychol 2011; 16(Pt 2): 430-44.

9. Bogosian A, Moss-Morris R, Hadwin J. Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review. Clin Rehabil 2010; 24(9): 789-801.

10. Coles RA, Pakenham KI, Leech C. Evaluation of an intensive psychosocial intervention for children of parents with multiple sclerosis. Rehabil Psychol 2007; 52(2): 133-42.

11. Mutch K, Ridley J. MS in the family: a day for young people who have a parent with MS. Activity and facilitator’s pack.

London: MS Society; 2004.

12. Segal J, Simpkins J. Helping children with ill or disabled parents: a guide for professionals. London: Jessica Kingsley; 1996.

13. Johnson J, Harding K. Our mum makes the best cakes.

London: MS Society; 2010.

14. Webster G, Daisley A. A family resource pack for working with children affected by familial acquired brain injury.

Clin Psychol 2005; 46: 26-9.

15. Webster G, Daisley A. Including children in familyfocused acquired brain injury rehabilitation: a national survey of rehabilitation staff practice. Clin Rehabil 2007; 21: 1097-1108.

16. Gibbons Z. Applying the theory of planned behaviour to investigate staff decisions to undertake focused work with child relatives of adults with MS. Oxford Doctoral Course in Clinical Psychology, Oxford University; 2006.

Unpublished doctoral dissertation.

17. Chevalier Z, Tams R, Webster G, Daisley, A. Working with child relatives of adults with MS: a resource pack for teams; 2010. Unpublished.

18. Multiple Sclerosis Trust. Kids’ guide to MS. Letchworth: MS Trust; 2009.

19. Multiple Sclerosis Trust. The young person’s guide to MS. Letchworth: MS Trust; 2010.

Information news MS and me We’re delighted to let you know that the revised edition of MS and me: a selfmanagement guide to living with MS is now available. This resource provides information and strategies to support people living with MS to gain the skills to successfully self-manage. It includes problem solving, setting goals, monitoring symptoms, using resources effectively and healthy living. All of these are relevant to people at any point from diagnosis to more advanced MS. “The very nature of MS requires a dynamic and positive approach: moving from a passive role to a proactive one – learning to take the lead in living with MS and the changes it brings.” Liz, MS and me group participant.

In the last edition of Way Ahead, Helen Gilburt, Fellow in Health Policy at the King’s Fund, explored the role of patient activation in enabling people living with a long-term condition to gain the skills and confidence to engage in successfully managing their own health1. MS and me can be used to reinforce self-management courses that you run, but equally provides information for those people with MS who might not want to take part in group learning.

MS and me was originally developed by Nicki Embrey, MS clinical nurse specialist at North Staffordshire University Hospital, in close association with a group of people living with MS and actively self-managing.

“We decided we wanted a really accessible self-management guide without too much jargon and felt it was important that it came directly from people who had MS and experience of managing their MS successfully.” Carole, MS and me group participant.

Over 20,000 copies of MS and me have been distributed since the book was initially published four years ago and it is consistently one of the top five most popular publications ordered by both health professionals and people with MS.

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“There are useful practical templates for diaries and so on, as well as illustrative examples which show how normal and personalised some of the tools are intended to be. It’s an attractive and weighty resource that will be a useful reference tool for MS patients offering the kind of reassuring and encouraging words that all patients managing long-term conditions need to hear.” Judge’s comments, BMA Patient Information Awards 2011 (Highly commended).

1. Gilburt H. Supporting people to self-manage – the role of patient activation. Way Ahead 2015; 19(2): 10-12.

Living with fatigue The latest revised version of Living with fatigue has now been published. As befits the most common symptom of MS, Living with fatigue has been our most requested book – with more than 47,000 copies sent out since it was first published in 2006.

The book is based on a fatigue management programme developed by an MS specialist occupational therapist. In accessible language, it looks at the nature and causes of fatigue and the principles of fatigue management.

There is a strong focus on self-management approaches and the book offers practical suggestions for maximising energy, looking at factors such as sleep, stress, nutrition and fitness. It also looks at how people can use their energy in the most effective way by planning, prioritising, delegating and pacing activity. The latest version sees the inclusion of information on mindfulness and acceptance and commitment therapy (ACT).

At work with MS We are sorry to announce that At work with MS will no longer be available in print form.

However, it is still available as an interactive online resource at www.mstrust.org.uk/ information/publications/at-work-with-ms/ All our books and factsheets can be ordered for free from the back page, by email: info@mstrust.org.uk, by phone: 01462 476700 or through our website www.mstrust.org.uk

Call: 01462 476700

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Professional development MS Trust Conference 2015 8-10 November, Beaumont Estate, Nr. Windsor

This is the must-attend event for all health professionals working with people with MS. The MS Trust annual conference provides an exciting programme covering the latest developments and research into treatments and therapies for all types of MS. There is a wide range of workshops delivered by experts aiming to give up to date practical knowledge. The conference offers a great opportunity to network with other health professionals with an interest in MS.

Research and development showcase – Help with funding your attendance call for posters The MS Trust runs generous bursary schemes Have you or your team undertaken a research or audit project, gathered evidence about your practice or service, or worked in partnership with other teams or services? This is your chance to celebrate your work; we had 30 posters last year which was a record and are hoping for 50 this year. Don’t be shy, take this chance to highlight all that you do for people with MS. A range of resources to help you with your poster submission can be found on the conference website.

for nurses and all allied health professionals.

This means that with a bursary the cost would be less than £150 (+VAT) which is great value for a three day residential conference (full conference fees are £575 (+VAT).

Visit the conference website www.mstrust. org.uk/conference to book your place online and find the most up to date programme and poster submission information.

Nominate outstanding MS health professionals for the QuDoS in MS Awards Recognising innovation and excellence in MS management and service delivery

The MS Trust is delighted to support the launch of the first ever awards recognising the contribution of healthcare professionals and teams to improving care for people living with MS. The QuDoS in MS Awards – recognising Quality in the Delivery of Services highlight the valuable contribution of individuals and teams in improving the quality of life, and experience of care, of those with MS. The QuDoS in MS Awards are now open for entry to: • MS specialist nurses • other nurses working with people living with MS • allied health professionals, such as occupational therapists and physiotherapists • multidisciplinary teams

• neurologists • pharmacists • GPs • commissioners.

In total there are ten categories. The entry deadline is 5pm, Thursday 3 September 2015.

Winners will be announced at a celebration event on 7 November 2015, the evening before the MS Trust annual conference.

Go to www.qudos-ms.com to register your details and download an entry form.

MS Study Day in partnership with Hobbs Rehabilitation Winchester, 17 September 2015 £75 +VAT, including lunch A study day for health and care professionals who have an interest in MS and manage an active clinical case load; providing an understanding of important issues relating to the care of people who are affected by MS. • therapeutic management of ataxia Topics include: • management of bladder and bowel • diagnosis of MS and latest drug problems in MS management • cognition and MS. • medical management of pain for people with MS For further details visit the MS Trust • fatigue management in MS website www.mstrust.org.uk/studydays www.mstrust.org.uk

Supporting the MS Trust Put your best foot forward to help people with MS Do you enjoy running? Or maybe you have never run before but you’d like to try something new. Signing up for a running event gives you something to work towards and a chance to be part of a special day. There are all kinds of events happening all over the country, from 5K fun runs to extreme ultramarathons, as well as obstacle races or themed events where you could get chased by zombies or covered in powder paint!

Once you have found the event that’s right for you, you also have a great opportunity to raise sponsorship. Contact the MS Trust and you will become part of our running club where you’ll have access to training guides, fundraising materials and a dedicated fundraising team to give you guidance and support every step of the way.

Lucy Ruscoe, a clinical nurse specialist in MS at the University Hospitals of the North Midlands, will be running the Potteries Marathon in Stoke-on-Trent in July to raise funds for the MS Trust. Lucy said, “I want to thank the MS Trust for the ongoing education and support that they provide for healthcare professionals, and the excellent support and high quality resources that they have developed for people with MS.” “The MS Trust has supported my clinical development as an MS nurse” said Lucy who attended our development module when she first came into post, as well as our annual conferences. “I feel very valued by the MS Trust as they support healthcare professionals by campaigning and generating evidence about the importance of specialist roles. This will be my first full marathon and I hope that if you also feel passionate about this charity and the superb work that they do, you too will consider raising funds in any way that you feel possible.”

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Santa Run which will take place in London’s Victoria Park on Sunday 6 December, or you can visit our website to find other runs near you. If you’d like to run for the MS Trust, we would love to hear from you.

Please contact our fundraising team on fundraising@mstrust.org.uk or 01462 476707.

We would be very grateful if you could find somewhere to display the enclosed poster about our London to Paris cycle ride, perhaps on a noticeboard in your workplace or in a local community centre. The more people we can reach, the more money we can raise.

Thank you for your help.

If you would like to sponsor Lucy in the Potteries Marathon, you can do so via her JustGiving page www.justgiving.com/ Lucy-Ruscoe1.

The MS Trust has places available in some running events, such as the 5K or 10K For more information about any of our fundraising activities, please call 01462 476707 or visit www.mstrust.org.uk/fundraising Call: 01462 476700

Publications A complete listing of all our publications can be found on our website at www.mstrust.org.uk/ publications/ where you can also place your order online.

To help us keep down our costs please order online before 10am on a Wednesday for despatch on the following Monday.

Making Sense of MS resources for the newly diagnosed

Other publications for people with MS (a sample) MS explained MS-84 Living with fatigue MS-204 REVISED Managing your bladder MS-429 Managing your bowels MS-430 Disease modifying therapies MS-90 MS and me MS-318 REVISED

Making Sense of MS introductory booklet MS-444 Making Sense of MS core folder MS-448 Please note: The six components of the Making Sense of MS Core pack can also be ordered individually online Making Sense of MS optional information: Telling people MS-454 Working and studying with MS MS-457 MS and life choices MS-446 MS and your feelings MS-447 Treating symptoms MS-455 Disease modifying treatments: an introduction MS-442 Relapsing remitting MS: an introduction MS-450 Primary progressive MS: an introduction MS-449 Secondary progressive MS: an introduction MS-452 Research and MS MS-451 A short guide to understanding my MS (to give to others) MS-441

Factsheets – (a sample) Cognition MS-144 Depression MS-315 Diet MS-92 Pain MS-96 REVISED Pregnancy and parenthood MS-134 Publications for health and social care professionals MS information for health and social care professionals MS-100 4th EDITION Spasticity care pathway MS-103

A maximum of 30 copies of each individual book, and 10 copies of each individual factsheet can be requested in an order.

All items are free, but if you would like to make a donation towards our costs, we would be very grateful.

I enclose a cheque made payable to the MS Trust.

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If you would like to Gift Aid your donation, please also provide us with your home address.

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