9-12 Consumer involvement in creatinga fatigue management programme in New Zealand Hilda MulliganArticle describes the development of a fatigue management programme in Canterbury, New Zealand, with the involvement of people with MS, which has been rolled out countrywide.

The periodical for health professionals with aninterest in MS

I S SN 1466-559x

www.mstrust.org.uk

January 2016

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Volume 20 Part 1

2-3

4-5

6-8

12-15

16-17

17-18

18-19

Research news Highlights from the ECTRIMS conference and NICE review of beta interferons and glatiramer acetate.

Patient experiences of care when transitioning to SPMSFreya DaviesSummary of selective findings of a study exploring patient experiences of the transition to secondary progressive MS, including three key questions for practitioners to assist reflection.

The Scottish MS RegisterHazel DoddsDescribes the creation of the Scottish MS Register to collect reliable information on the numbers of people in Scotland with a new diagnosis of MS and to contribute to service improvements.

The GEMSS evaluation projectGeraldine MynorsArticle provides a reminder of the aims of the GEMSS programme, discusses some of the main findings and looks at the impact it had on the health professionals involved.

Measuring the burden of hospitalisation in MSSue ThomasDiscusses the results of a report which examined the increase in unplanned admissions into hospital of people with MS, some of the reasons behind the increase and the actions required to ensure people with MS receive the services they deserve.

Auditing ‘admissions avoided’Geraldine MynorsArticle looks at some potential ways for MS specialist services to document and audit their ‘admissions avoided’.

Professional developmentRound-up from the MS Trust 2015 conference and the development of a competency framework for AHPs.

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2 Research news

Highlights from the ECTRIMS conference Over 8,000 people, including researchers and practitioners, attended ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) the world’s largest conference devoted to basic and clinical research in MS. The 2015 meeting took place in Barcelona from 7-10 October and featured a wide range of presentations, posters and reports of new and ongoing research. Next year’s ECTRIMS meeting will take place in London from 14-17 September.

The ECTRIMS Online Library allows you to view abstracts, webcasts, ePosters and presentations from ECTRIMS by event, type of content and speaker/author. You can access it at www.ectrims.eu/online-library/

Below are summaries of some of the key research presented.

Ocrelizumab in PPMS In the ORATORIO study, 732 people with primary progressive MS took part in a randomised, double blind phase III trial. Participants received either ocrelizumab (600mg administered by intravenous infusion every six months) or placebo for over two years. Ocrelizumab significantly reduced the progression of clinical disability, sustained for at least 12 weeks, by 24% compared with placebo as judged by EDSS scores. Ocrelizumab was also better than placebo for other measures of increasing disability such as the time to walk 25 feet, brain volume and the number of lesions seen on MRI scans.

This is the first large scale study to report a reduction in disability progression in primary progressive MS, and it attracted much media coverage. Results should be published in a peer reviewed journal in due course.

Ocrelizumab in RRMS OPERA I and OPERA II were phase III, randomised, double blind, double dummy, multicentre studies involving people with either RRMS or SPMS with relapses. 1,656 participants received either ocrelizumab (600mg administered by intravenous infusion every six months) or interferon beta-1a (44mg Rebif administered by subcutaneous injection three times per week).

Ocrelizumab reduced the annualised relapse rate by almost 50% compared with Rebif over a two year period. It also delayed disability progression by about 40%, as judged by EDSS score, at both 12 and 24 weeks. Inflammation, measured by the total number of T1 gadolinium-enhancing lesions on MRI scans, was reduced at 24, 48 and 96 weeks by more than 90%. T2 hyperintense lesions were reduced at 24, 48 and 96 weeks by around 80% compared with Rebif.

Overall, the incidence of side effects was similar for all treatment groups. The

most common side effects associated with ocrelizumab were infusion-related reactions. Serious side effects, including serious infections, occurred at the same rate in all treatment groups.

The manufacturer will now apply to the European Medicines Agency for marketing licences. If licences are granted, the drug will also need to be approved for NHS use. If successful, ocrelizumab could be available on the NHS from 2017.

Read more about ocrelizumab online www.mstrust.org.uk/a-z/ocrelizumab

Zinbryta (daclizumab) DECIDE was a two to three-year, phase III, randomised, double blind, multicentre trial which compared 150mg of subcutaneous Zinbryta (daclizumab) every four weeks with 30mg intramuscular interferon beta-1a (Avonex) once weekly in people with RRMS. Daclizumab increased the percentage of patients achieving no evidence of clinical and MRI disease activity, improved cognitive processing speed and reduced 24-week confirmed disability progression at two years.

Read more about daclizumab online www.mstrust.org.uk/a-z/daclizumab

Lemtrada (alemtuzumab) Two phase III clinical trials compared Lemtrada to high-dose subcutaneous interferon beta-1a (Rebif) in patients with RRMS who had active disease. In CARE-MS I, participants were new to treatment, whereas in CARE-MS II, participants had shown an inadequate response to another therapy.

Five year follow up of over 600 people showed that people treated during the two pivotal Lemtrada trials continued to show a low relapse rate, about four in five showed no sustained progression, and brain atrophy averaged around the level seen in people who don’t have MS. A little more than a third of those who had disability before the trials showed improvements. Two thirds of participants didn’t need further treatment with Lemtrada beyond the first two courses. Instances of thyroid related side effects peaked in year three.

Read more about Lemtrada online www.mstrust.org.uk/a-z/lemtrada-alemtuzumab

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3Cognition as an early symptom of MSThe cognitive and physical performance of Norwegian men born between 1950 and 1995 was routinely recorded at age 18 to 19 as part of their conscription into the armed services. This study linked that data to the Norwegian MS registry to identify those who later developed MS. For each case in the MS registry, five controls were randomly selected from the conscription database.

The research found that those who developed their first clinical MS symptom one to two years after the examination scored significantly lower on the cognitive assessment compared to the control group.

This corresponded to a difference of 6.1 points on the IQ-scale. Those who developed MS at any time after the assessment, showed an overall significantly lower mean physical score compared to the controls.

The researchers suggest that MS may start several years prior to clinical presentation of the disease, and that cognitive impairment could be an early sign. They argue that these results confirm the importance of early diagnosis then beginning disease modifying drug treatment, as well as screening for cognitive dysfunction in the early disease phase.

NICE to review beta interferons and glatiramer acetate Currently the beta interferons and glatiramer acetate are not recommended by NICE, however the Department of Health Risk-sharing Scheme (RSS) has been the means of access to these drugs for people with MS. Now the Scheme is drawing to a close, NICE need to review their guidance. NICE is planning to use the analytical model employed, and data generated, by the RSS as a central part of the review. To cover any period between the end of the RSS and completion of the review, the Department of Health has confirmed there will be legal provision to ensure the continued availability of all four drugs on the NHS.

The review (TA32) will be carried out using NICE’s usual documented process. The MS Trust has been involved as a stakeholder in the scoping process. The review is likely to

look at cost effectiveness of all forms of beta interferon as well as glatiramer acetate. NICE is also considering whether to include the biosimilar Plegridy in the review.

QuDoS award winners The winners of the inaugural QuDoS awards, recognising quality in the delivery of MS services, were announced at a ceremony on the Saturday evening before the start of the MS Trust conference. The QuDoS awards highlight innovation and excellence in MS management and service delivery and recognise the valuable contribution of individuals and teams in improving the quality of life and experience of care for people living with MS. The awards were initiated by pharmaphorum with the support of the MS Trust.

The winners were:• Outstanding MS specialist nurse – joint

winners: Sian Locke, Helen Durham Centre, Cardiff and Vale Health Board, University Hospital of Wales and Liz Watson, Bradford Teaching Hospitals NHS Foundation Trust

• Outstanding allied health professional working in MS: Wendy Hendrie, Norwich MS Therapy Centre

• Outstanding neurologist in MS treatment: Michael Douglas, Dudley Group NHS Foundation Trust

• Multidisciplinary team of the year: Tayside and North East Fife MS Service

• Innovation in practice: Pathway redesign to promote seamless services between hospital and community – Derek Laidler and Andrea James, NHS Highland and Lorn

and Oban Healthy Options• Information in practice: Outstanding use of

information and shared decision making in MS care – PML risk communication information resource, Gavin Giovannoni, Queen Mary University of London and Bart’s Health NHS Trust

• Evidence in practice: Using audit, evaluation or research to improve user experience/outcomes of care – Multiple Sclerosis Aqua Research Team (MSART), University of Brighton and Burrswood Hospital

• Judges’ Special Award – two winners: Family Focused Support Team, Oxford Centre for Enablement, Oxford University Hospitals NHS Foundation Trust and Christine Singleton, Specialist Physiotherapist, Birmingham Community Healthcare NHS Trust.

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4 Reflecting on patient experiences of care around the transition to secondary progressive MSFreya Davies, Academic Fellow; Fiona Wood, Senior Lecturer; Adrian Edwards, Director; Institute of Primary Care and Public Health, Cardiff University

IntroductionPatient experiences of healthcare services can identify professional learning needs different to those identified by professionals themselves, providing significant insights1. Previous qualitative research with people with MS in the UK has tended to focus on patients’ experiences during the diagnostic stage or towards the end of life, with relatively little exploration of experiences in the middle of the disease course2 when patients may transition to secondary progressive MS (SPMS). Professionals recognise that the transition to secondary progressive MS is a challenging stage3, 4. We were funded by the MS Trust to explore patients’ experiences of this period. We performed semi-structured interviews with twenty people with MS to describe their experiences of the transition and uncover areas where progress is needed. The full results of this study have been published elsewhere5 and here we provide a brief summary of selected findings. During the course of this project we found that professionals valued the opportunity to consider their current practice relating to the transition. In this article we present three key questions for practitioners to assist reflection.

When do you discuss the transition with your patients?“I thought I had, relapse remittent. Then

I go to my next appointment and I have this [clinic letter] from that appointment and then I nearly froze in my boots when I read it. ‘Secondary progressive multiple sclerosis.’ They never told me I had that. So that was very shocking.” Participant 013, female patient with SPMS.

There was wide variation among patients about whether they had expected to transition to SPMS and how they found out that the transition had occurred. While some patients described coming to a gradual realisation that their MS had changed, for others the possibility of a change in the ‘type’ of MS they had wasn’t something they had ever considered. Whereas some described health professionals broaching the subject with them, several others described never having discussed the transition at all. Finding out by chance that they were now labelled as secondary progressive had caused significant distress for a few participants. Some patients also described feeling that useful information had been withheld from them. Some were

unclear about how and when the diagnosis was made; especially as from their perspective by the time the transition was labelled they felt their condition had been stable for some time.

Practice point: We would encourage professionals to think about when they raise the possibility of the transition, and if they provide adequate information to help their patients understand what the transition means for them.

Are appointments tailored to address the needs of individuals? “It is absolutely ridiculous, even when I go

down to the [hospital], when I see whoever and they will say ‘Oh how are you feeling?’ and I say ‘Oh yeah I am okay’, and they say ‘Okay then see you next year’.” Participant 022, female patient with SPMS.

Although some patients were highly satisfied with their MS care, others described unhelpful consulting practices. As in other research6, our participants felt that appointments were often overly focused on addressing the biomedical agenda rather than the patients’ priorities. Reviews could feel like

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5a ‘tick box’ exercise and patients described that they needed to adopt a proactive stance if they wanted to get anything useful out of appointments. Tactics like taking a list or newspaper clippings were developed over time by those who wished to have a more active role in their disease management. Although some people described ‘knowledge as power’ others did not find detailed medical information relevant to their own day to day life.

Practice point: The challenge for professionals here is to remember to assess patients’ preferences for information early and repeatedly, in order to tailor appointments accordingly and to encourage patients to contribute their experiences, opinions, and wishes into the conversation. Personalised information was seen as particularly important, with patients wanting to know what reaching the transition meant for them, how they would be supported by the healthcare team and what they could do for themselves.

How does the way you deliver your MS service impact upon patients’ experiences of transition? “I’ve seen quite a lot of people [health

professionals] initially but then over the [years], as time has gone on they have sort of fallen away and now I am just sat with the disease.” Participant 038, male patient with SPMS.

Some interviewees described how their follow-up arrangements changed as a result of their transition to SPMS. Nurse follow-up was often provided instead of regular neurologist reviews. From the patient perspective this could lead to a feeling of abandonment, with the medical profession seen to view SPMS as less important and less treatable. The new label of SPMS could be seen by some patients to result in care being ‘downgraded’. During the transition, patients described that they needed to actively seek out support, as little seemed to be offered spontaneously. This differed from their experiences of being newly diagnosed when they felt that more support was available, although not necessarily needed as much, at that time.

Practice point: We ask professionals to consider the sometimes inadvertent messages

given to patients by the way we design and deliver services. Reasons for a change in the way care is provided should be given to patients and a positive focus on what is available (rather than what is no longer an option) is likely to be welcomed.

Conclusions Our research has identified several important challenges faced by patients during the transition phase as they interact with the health services. Personalised information was seen as important although it was not always forthcoming. The information provided should be tailored to take into account individuals’ information preferences, experiences and clinical situations. Patients’ preferences for the level of information provided, and timing of its delivery, varied so widely that the only way to ensure that information needs are met is to regularly check what the patient knows and wants to know. If staff do not provide clear information, patients may come to their own conclusions based on the changing level of follow-up they receive and this may result in a negative experience of the transition. We hope that the descriptions of patient experiences that this research has provided will help professionals caring for people in the transition phase and encourage good practice.

References:1. Forbes A, While A, Ullman R. Learning needs analysis: the

development of a tool to support the on-going professional development of multiple sclerosis specialist nurses. Nurse Educ Today 2006;26(1):78-86.

2. Methley A, Chew-Graham C, Campbell S, Cheraghi-Sohi S. Experiences of UK health-care services for people with multiple sclerosis: a systematic narrative review. Health Expect 2015;18(6):1844-55.

3. Deibel F, Edwards M, Edwards A. Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study. Eur J Person Cent Health 2013;1(2):457-67.

4. Katz Sand I, Krieger S, Farrell C, Miller AE. Diagnostic uncertainty during the transition to secondary progressive multiple sclerosis. Mult Scler 2014;20(12):1654-7.

5. Davies F, Edwards A, Brain K, et al. “You are just left to get on with it”: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis. BMJ Open 2015;5(7):e007674.

6. 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.

Copies of the MS Trust book, Secondary progressive MS can be

ordered through the website www.mstrust.org.uk/pubs

or by phoning 01462 476700.

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6 The Scottish MS Register: the first five yearsHazel Dodds, Senior Nurse, Scottish Healthcare Audits, NHS National Services Scotland; Dr Belinda Weller, Neurologist, NHS Lothian/Chair Scottish MS Register; Dr Paul Mattison, Neurologist, NHS Ayrshire & Arran/Sub-chair Scottish MS Register. On behalf of the SMSR Steering Group

Introduction: why the Scottish MS Register is importantScotland has an unenviable number of people affected by multiple sclerosis (MS) with some of the highest reported rates in the world, both of incidence and prevalence. However, accurately recording the true number of people affected has not previously been possible due to a reliance upon retrospective data for which we cannot verify how accurate the case ascertainment process was.

BackgroundThe Scottish MS Register was first discussed in 2005, with the initial concept of a national register in Scotland being introduced by the MS Society. A steering group was formed in 2006, which began collaborating with neurology colleagues across Scotland, to determine the aims of a Scottish MS Register and the processes required to collect relevant data. Management of the Register moved to the Information Services Division (ISD) of NHS National Services Scotland in 2009 and data collection finally started in 2010 with the first National Report being published in 2011.

The Scottish Register only collects information on patients with a new diagnosis of MS from 1 January 2010 which has been confirmed by a consultant neurologist, i.e. it collects incidence data. This contrasts sharply with the UK Register, which is a self-reported community of people with MS that anyone can join.

Aims of the Scottish MS RegisterMS is the most common disabling (progressive) neurological condition among young adults in Scotland1. The Scottish MS Register was created in order to provide, for the first time, a valid assessment of the numbers of people with a new diagnosis of MS. The purpose of collecting reliable information is to contribute to service improvements for those with MS in Scotland. To achieve this goal, the Register collects information on the person’s journey, from symptoms to a definitive diagnosis of MS, through to referral to an MS specialist nurse. We hope that the benefits of the register will be:1. To improve the quality of health care

services and so ultimately the health of those with MS in Scotland.

2. To allow clinical teams to prioritise areas of service improvement.

3. To allow the comparison of clinical services at local and national levels against published national Neurological Standards relating to MS.

4. To initiate and manage research to provide the evidence to drive improvements to current practice.

MethodologyData recording each new case of confirmed MS made by a consultant neurologist since 1 January 2010 have been collected primarily by the MS specialist nurses using an agreed proforma. Data are validated and analysed centrally within ISD, who provide the clinical teams with quarterly reports containing local data and an annual national report.

ResultsThe Scottish MS Register published a National Report2 on 8 September 2015 which presented five years of data (2010-2014) as well as other interesting information regarding the Register and MS care across Scotland. The key findings presented in the report were noted as:1. In 2014, 431 new patients were reported

to the MS Register. This brings the total number of people reported over the five year period to 2,164.

It is worth noting that this represents a mean incidence rate over the five year period of 8.2 per 100,000 per year, a figure somewhat lower than those previously reported from historical regional based reports, but nonetheless still representing a significantly higher rate of MS than is seen in most other countries and in particular neighbouring countries in the UK.

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7

2. The average annual incidence over the five year time period shows that more than twice as many women as men were diagnosed with MS.

3. The level of new patients being reported to the MS Register is greatest amongst the 25-49 year age group.

Figure 1. The number of people newly diagnosed with MS in Scotland, 2010-2014 data (by Health Board)

Health BoardYear of Diagnosis

2010 2011 2012 2013 2014

NHS Ayrshire & Arran 16 29 34 36 33

NHS Borders 8 7 7 7 6

NHS Dumfries & Galloway 12 16 15 25 16

NHS Fife 29 27 34 39 32

NHS Forth Valley 17 23 25 26 29

NHS Grampian 54 49 60 65 50

NHS Greater Glasgow & Clyde 95 83 82 83 75

NHS Highland 27 19 27 34 39

NHS Lanarkshire 48 30 46 29 22

NHS Lothian 60 54 50 73 66*

NHS Orkney 5 5 5 3 2

NHS Shetland 4 6 1** 1** 2**

NHS Tayside 42 42 56 50 59

NHS Western Isles 5 2 3 3 0

Total 422 392 445 474 431

Image taken from p16 of the SMSR National Report – available at www.msr.scot.nhs.uk/index.html

Notes relating to Figure 1.1.1 One patient residing in NHS Lanarkshire Board area did not have a year of confirmed diagnosis recorded and consequently

has been removed from the above table.1.2 2014 data for NHS Lothian (denoted*) are incomplete due to data collection issues.1.3 Data for NHS Shetland (denoted **) are incomplete due to data collection issues.

Figure 2. Average annual age specific incidence of people newly diagnosed with MS in Scotland per 100,000 population, 2010-2014 data (by gender)

Image taken from p14 of the SMSR National Report – available at www.msr.scot.nhs.uk/index.html

Notes relating to Figure 2. 2.1 Arithmetic mean of mid-year gender population estimates for 2010-14 have been used for the above analysis, and the

arithmetic mean incidence for each gender across this five year time period has been taken.2.2 Arithmetic mean age for each gender is calculated using patients date of birth quoted at time of confirmed diagnosis.2.3 Three males and five females were excluded from the above analysis as their date of confirmed diagnosis of MS

was unknown.

5 year age group

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00

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5-90-4 25-2910-14 15-19 20-24 30-34 35-39 40-44 45-49 65-6950-54 55-59 60-64 70-74 75-79 80-84 85-89 90+

Female = 41 yrsPersons = 41 yrsMale = 42 yrs

Average age

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8

4. In 2014, 63% of patients had contact with an MS specialist nurse within two weeks of diagnosis. This is a 7% improvement on 2013 (56%), though performance does vary.

5. Delays in MS specialist nurses receiving referrals from neurologists continue to be problematic.

6. In 2014, once the referral was received by the MS specialist nurse, contact within two weeks was achieved for 85% of patients.

ConclusionThere continues to be a great opportunity for Scotland to develop this unique Register of those newly diagnosed with MS. These data provide a picture of the potential of the Register to provide a benchmark against which clinicians can raise standards and drive improvements in MS management across Scotland.

The futureDiscussions are underway to plan the future direction of the Scottish MS Register. Areas of interest include:• moving to electronic capture of data• measuring performance against additional

neurological standards

• utilising organisational/sprint audits to look at different aspects of service delivery and the patient pathway

• improving use of the data locally to drive improvements in resource allocation and service delivery

• prevalence data – a project has already commenced collecting data from primary care (GP practices) to determine the prevalence of MS in Scotland

• use of disease modifying drug therapies across Scotland

• collaborative working, for example with the Future MS programme.

The SMSR has a research sub-group and has recently made links with PhD students who plan to utilise the SMSR data in their research studies. Information requests have been received. If you are interested in using MS data for research purposes then please read the information available on the Scottish MS Register website www.msr.scot.nhs.uk/Research/Main.html which explains the release of data process adopted by ISD.

References:1. Sutherland JM. Observations on the prevalence of MS in

Northern Scotland. Brain 1956;79(4):635-54.2. Scottish MS Register National Reports, 2011-2015.

Available from: URL: www.msr.scot.nhs.uk/Reports/Main.html [Accessed 18 Nov 2015].

Figure 3. Percentage of people with a new diagnosis of MS contacted by an MS nurse within two weeks of confirmed diagnosis vs percentage contacted within two weeks from receipt of referral, 2010-14 data.

Image taken from p14 of the SMSR National Report – available at www.msr.scot.nhs.uk/index.html

Notes relating to Figure 3. 3.1 Analysis above is calculated using cases for which contact with an MS specialist nurse was not declined. Cases where contact

was declined (N=26) have been excluded.3.2 Two patients have been excluded from the calculation pertaining to the number of weeks between confirmed diagnosis

and first contact (*) as they both received a confirmed diagnosis from a consultant neurologist outside Scotland (Wales and Australia).

3.3 One patient has been excluded from the above analysis due to incomplete/missing date of confirmed diagnosis.

Year of diagnosis

% o

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ople

Year of diagnosis2010 2011 2012 2013 2014

20%10%

60%

30%40%50%

70%80%90%

100%

0%

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Diagnosis to 1st contact Receipt of referral to 1st contact*

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9Consumer involvement in creating the Canterbury Fatigue Programme for New ZealandHilda Mulligan, Research Physiotherapist, University of Otago; Jessie Snowdon, Physiotherapist, MS and Parkinson’s Society of Canterbury; Louise Tapper, Occupational Therapist, Port Hill Therapists, Christchurch

IntroductionMultiple sclerosis related fatigue is the symptom of MS that is possibly the most poorly understood by health professionals and probably the most poorly managed. A recent prevalence study in NZ, has shown a high prevalence of MS1, similar to that seen in other countries far from the equator such as the UK. 75-90% of people with MS experience fatigue2 and most describe it as their worst symptom, the thing that prevents them carrying on with their ‘old life’3.

“It is not a healthy tired that is so satisfying following a hard day’s work. It is a draining, sickening tired that engulfs you, it weighs you down, nauseates, as well as crushing your spirit.” Ann4.

Because MS occurs in early adulthood, the effect of fatigue on people’s ability to work, raise a family and take care of their own health and wellbeing cannot be underestimated. MS related fatigue is unique and although its primary cause is not yet known, there are several secondary causes which can be addressed.

A successful strategy for management of MS related fatigue are group programmes that enable people with MS to learn how to manage their fatigue via energy conservation strategies and general lifestyle changes2, 5. A fatigue management programme was not available in New Zealand prior to the instigation of the Canterbury Fatigue Programme – ‘Minimise Fatigue, Maximise Life’.

Development of the programmeIn 2011, the Multiple Sclerosis and Parkinson’s Society of Canterbury (MS & PD Society) developed and ran an informal fatigue management course. The course was designed by the MS & PD Society’s physiotherapist, Jessie Snowdon, based on overseas models and current thinking around fatigue management strategies.

The initial course was well received. Participants reported positive benefits to their fatigue, general wellbeing and feeling

of ‘control’ over their MS. A further four courses (21 participants in total) were offered in Canterbury with ongoing positive feedback from attendees. The course appeared to have the potential to make an important contribution within health services for people with MS throughout New Zealand.

Planning and implementationWhat we therefore wished to do was to create a robust, valid and contextually relevant programme for fatigue management that could attract sufficient interest and funding to be offered throughout New Zealand. To achieve this, three key stages were identified: 1. Development of the programme 2. Training of facilitators to deliver the

programme across New Zealand3. Evaluation of the training course and

the programme.

The guiding principles were that the programme would be:• developed in conjunction ‘with’ people

with MS, rather than ‘for’ them• contextually and culturally appropriate

for New Zealand• formally researched and evaluated to

demonstrate outcomes, show benefit for people with MS in a way that was immediate, and had a significant effect on their daily lives.

This first principle was important as consumer involvement would provide an authenticity and validity that could not be achieved via any other means. Dr Mulligan’s research background had introduced her to a

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10 style of research that seemed to fit this concept – Participatory Action Research (PAR)6, 7. This was a methodological approach that facilitated involvement of people with MS as equal research partners.

Potential members for the PAR group were recruited from attendees of the early fatigue management courses. We invited potential participants with a spread of ages, both genders, length of time since diagnosis with MS and type of diagnosis, and also because they had been ‘active’ attendees at the course, i.e. they were prepared to take part in group discussions and offer their viewpoints. The final research group was made up of six people with MS, Dr Hilda Mulligan, Jessie Snowdon, Louise Tapper and a physiotherapy student on clinical placement at the MS & PD Society. Development of the programme was supported by a grant from the MS & PD Society of Canterbury.

The PAR processThe PAR process involves a cyclical process of group decision making, action, and reflection on action.

Five group meetings were held between July 2012 and January 2013. At the first meeting the PAR process and overall aim were introduced. The group then decided how they wanted to work and what the final outcome would be. Each participant shared their experience of attending the initial course and what they felt should be retained or changed. Topics of discussion ranged from the big picture such as how the programme should be run, down to details around font size and colour of an intended workbook. At the end of each meeting a series of actions were planned and the agenda for the following meeting was started.

The ‘actions’ carried out in between meetings included:• turning the group discussion into actual

written content for the programme and its workbook

• review of each draft, collating the feedback and altering drafts as needed

• writing of personal stories by each person with MS to be used throughout the book

• editing and proofing• coordination of photographic images to

illustrate personal stories• liaison with graphic designer and

print companies.

The Canterbury Fatigue Programme – ‘Minimise Fatigue, Maximise Life’ The programme and its workbook were finalised in January 2013 and formally launched in Canterbury on World MS Day, 29 May 2013. There were 100 attendees at the launch, including people with MS, neurologists from the local Health Board and researchers from the New Zealand Brain Research Institute who were interested and keen to support this initiative.

The programme consists of a facilitators’ training manual and a workbook to be delivered to groups of 4-6 people by a trained and licensed facilitator who is a registered health professional. It runs for six weeks and each week involves a two hour meeting. Information is presented by the facilitator in an interactive format, supplemented by information within the workbook. Attendees carry out individual reflective exercises and group discussions. Group discussions facilitate the sharing of knowledge and strategies and attendees offer and receive support from others. The programme is based on the principles of self-management, which strives for the development of self-efficacy and self-determination by attendees. Over the six weeks, attendees explore different aspects of MS related fatigue, analyse their own fatigue and take action to make positive changes in their own lives. The content includes structured sections on topics such as energy conservation, coping with heat, improving sleep, exercising with MS, and communicating with others. Although the content is structured, it allows flexibility according to topics that arise during group discussions.

REFLECTION

DECISIONMAKING

ACTION

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11The PAR group decided that the workbook should not be ‘some scraps of paper’ but would be something they would be proud to use. Therefore it was designed by a graphic designer, but with significant input from the group as to the layout, feel and overall look. The workbook is an 84 page attractive folder with space for people to make their own notes. Each topic is illustrated with photographs, quotes and personal stories which all demonstrate real people with MS successfully managing their fatigue. Such ‘modelling’ is an important component towards the development of self-efficacy (an

important part of self-management). Each week also has a focus ‘story’ addressing a certain theme such as managing work, parenting with fatigue or making behaviour changes. It is of a quality that is expected to be long lasting so that attendees will be able to return to it for future reference.

In June 2013, six people from throughout New Zealand trained as facilitators. To date, these facilitators have delivered the programme in their own regions, once in 2013 (with 30 attendees in total) and again in 2014 (with 25 participants).

Evaluation of the programme Currently we are assessing the experiences of the facilitators in delivery of the programme and the efficacy of the programme itself with regards to the attendees’ experiences and health benefits (supported by a University of Otago Research Grant). Although analysis is not yet completed, the impact of the programme on the attendees is clear from the feedback that has been received regarding the different aspects of the programme as well as the overall benefits:

“It wasn’t until we did the diary that I started to understand… it made me realise it is not normal for most people to need a rest by the time they’ve got themselves up and through the shower... once I understood what was happening it was easier to do something about it.”

“The best thing I got out of the programme was... learning to manage my own fatigue in a way that worked for me. Although my fatigue can be very frustrating and debilitating it no longer controls me.”

“Knowing that other people are going through the same thing… I’ve sort of felt very much alone… and then the programme came up and it was fantastic.”

Figure 1. A sample page from the workbook illustrating the use of photos and quotes to support the content

www.mstrust.org.uk

12 Conclusions and future directionThe key aim of this project was to create a programme that was well researched, appropriate for New Zealanders and developed with consumers. The use of PAR enabled people with MS to be involved in its development. The innovative programme ‘Minimise Fatigue, Maximise Life’ has come from a group of people ‘to whom it matters’. They have been empowered to take responsibility for their own health and were willing to spend time and effort in creating a programme for the benefit of others with MS.

Future questions for us are how to continue to support people once they have completed the programme, and how to deliver the programme to those people who live in rural areas and therefore cannot attend the programme in a main centre. Consideration is being given to an online programme and support package, working in collaboration with colleagues in Germany who have expertise in online health service delivery.

References:1. Taylor BV, Pearson JF, Clarke G, et al. MS prevalence

in New Zealand, an ethnically and latitudinally diverse country. Mult Scler 2010;16(12):1422-31.

2. Matuska K, Mathiowetz V, Finlayson M. Use and perceived effectiveness of energy conservation strategies for managing multiple sclerosis fatigue. Am J Occup Ther 2007; 61(1):62-9.

3. Ennis M, Webster S. Living with fatigue: fatigue management for people with MS. Letchworth: Multiple Sclerosis Trust; 2015.

4. Canterbury Fatigue Programme. Minimise fatigue, maximise life: creating balance with multiple sclerosis. Christchurch, NZ: The Multiple Sclerosis and Parkinson’s Society of Canterbury (Inc); 2013.

5. Mathiowetz VG, Finlayson ML, Matuska KM, et al. Randomized controlled trial of an energy conservation course for persons with multiple sclerosis. Mult Scler 2005;11(5):592-61.

6. Whyte WF. Participatory action research. Newbury Park: Sage Publications; 1991.

7. Baum F, MacDougall C, Smith D. Participatory action research. J Epidemiol Community Health 2006; 60(10):854-7.

Copies of the MS Trust book, Living with fatigue can be ordered through the

website www.mstrust.org.uk/pubs or by phoning 01462 476700.

The GEMSS Evaluation Project – what have we learned?Geraldine Mynors, GEMSS Programme Manager, MS Trust

The MS Trust Conference in November 2015 saw the launch of the final report of the GEMSS Evaluation Project1. In this article, Geraldine Mynors provides a reminder of what the project was all about, highlights some of the main findings and the impact it had on those health professionals who took part, and looks ahead to MS Forward View.

Brief project overview and findingsOver the past three years, the MS Trust has worked collaboratively with MS specialist nurse teams across the NHS in England and Scotland. The teams were chosen through a competitive process to represent a wide range of MS services. Working with the MS Trust GEMSS facilitators, 15 teams, with a combined caseload of more than 15,000 people with MS, collected service and user experience data from April 2014 – March 2015. Besides collecting a wealth of data about MS services, the project helped build the skills and capacity of participants

to evaluate and improve their services going forward.

The results of GEMSS provide compelling evidence for the value of MS specialist nurses, evidence that was identified as lacking by the guideline development group for the 2014 MS NICE Guideline2 and the MS Trust’s own review3. The final report demonstrates, based on patient reported survey data and the views of other health professionals, that MS specialist nurses contribute across all five domains of the NHS outcomes framework. It also points to factors which make services effective and efficient and highlights the need for nurses to have manageable caseloads and sufficient support – particularly for

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13non-clinical administration – to enable them to use their skills and expertise to the full. The report and an executive summary are available to download at www.mstrust.org.uk/gemss

Learning from the GEMSS processA separate report4, also available from the MS Trust website, describes the process of running the GEMSS project and what the participating teams said about taking part. Across GEMSS I (2012/13) and GEMSS II (2014/15), 30 professionals (27 MS nurses, two physiotherapists and a research coordinator) worked collaboratively with the GEMSS facilitators to implement the project in their role as ‘GEMSS leads’. At the start of the project, they took part in an intensive two day residential training workshop to develop an understanding of evaluation logic and agree the data to be collected. This was supplemented over the course of the year by two additional workshops and regular conference calls, along with hands on support from the GEMSS facilitators for data analysis and report writing.

All the participating GEMSS I and GEMSS II teams stayed the course

throughout the project and implemented the entire suite of data collection tools. This in itself is a significant achievement, not least because most teams underwent management reorganisations during the course of the project. All the teams completed and disseminated a local evaluation report, in some cases resulting in the appointment of additional staff or in fixed term contracts being made permanent. The process report highlights that participating services, many for the first time, collated data that accurately describes the people on their caseload, the volume of activity they deliver and patient and stakeholder perspectives on their service, allowing analysis of the service and its delivery model in the round (figure 1). Four of the five GEMSS I teams were continuing to collect data on their activity and caseload two years after completing the project.

As well as leaving a legacy of tools for the wider MS community – including a patient survey and capacity planning tool, the GEMSS project has generated wider interest. With the MS Trust’s permission, Dementia UK will shortly be launching GEANS – Getting Evidence into Admiral Nursing Services – using the GEMSS approach.

Figure 1. Information known by GEMSS leads on key elements of their service (average response on a 5 point scale)

At the start of GEMSS On completion of GEMSS

2.00

What the main strengths of your service are

The impact your service has on outcomes for people with MS

What the priorities are to make the service more responsive to patient need

What patients think about the service

Characteristics of patients on your caseload

0.00 1.00 3.00 4.00 5.00

How much activity you undertake

Number of patients in your caseload

How your service generates income (England)

2.844.90

2.504.52

2.854.81

2.804.62

3.054.71

3.604.90

3.654.95

2.253.19

www.mstrust.org.uk

14 What does GEMSS tell us about AHPs?AHPs expressed interest at an early stage in participating in GEMSS, but a number of potential barriers to using the GEMSS approach and tools with AHPs were identified:• relatively few AHPs work exclusively with

people with MS. Most neuro-specialist AHPs work across multiple conditions, and hence to evaluate just the MS part of their work could be impractical – yet the MS Trust’s charitable objectives are limited to MS

• most (though not all) AHPs work on an episodic basis with people with MS, offering short courses of treatment for specific problems, rather than managing an ongoing caseload. AHPs already use a range of outcome measurement tools to track improvements in MS-related problems within their daily work, and hence already potentially have access to data that could help them to evidence the value of their input. It was not immediately apparent what the GEMSS evaluation tools would add

• it was also identified that AHPs in general have a greater level of confidence and knowledge around service evaluation than their nursing counterparts.

Nevertheless, recognising the importance of MDT working for people with MS, three multidisciplinary teams took part in GEMSS and the tools were adapted for AHP use. The aims were to explore whether the approach

would be useful in this context, and enhance understanding of multidisciplinary team working. So what did we find?

First, across the MS specialist nurse teams participating, there was wide variation in the ability of people with MS to access AHPs, and especially neuro-specialist AHPs, with excellent services in some areas but patchy services and long waiting times in others. GEMSS patient survey data (figure 2) showed that people with progressive forms of MS are less likely than those with relapsing remitting MS to have seen an MS specialist nurse or neurologist in the past year, but more likely to have seen an AHP, but nevertheless the proportion who have accessed therapy services remains low. The findings underline the need to continue to make the case for high quality provision of these services and to define what is meant by a ‘neuro-specialist AHP’, something which the MS Trust, working with Parkinson’s UK, the Motor Neurone Disease Association and TiMS (the Therapists in MS Group) have recognised by commissioning a project to define neuro-specialist AHP competences – the report is due out next year.

Secondly, the MDTs who took part in GEMSS demonstrated three very different models of working (figure 3), but all were able to use the GEMSS patient survey and activity monitoring tools to collect insightful data about the strengths and weaknesses of their services and to demonstrate their value to people with MS.

Figure 2. Proportion of survey respondents who had seen each type of health professional at least once in the past year (across 14 GEMSS teams)

20%

10%

60%

30%

40%

50%

70%

80%

90%

0%

Neurol

ogist

MSS

N

Physi

othera

pist

O.T.

S.A.L.T.

Dietitia

n

Orthop

tist

Relapsing remitting (n=636)

Secondary progressive (n=283)

Primary progressive (n=153)

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15

The patient survey which was adapted for AHP use in GEMSS is available to other teams to use, and the more teams that use it the more it will be possible to compare the effectiveness of different models from a patient and health professional perspective.

Looking ahead – MS Forward ViewThe GEMSS project has achieved its objective of demonstrating the value of MS specialist nurses, but has also highlighted challenges faced by MS services. The treatment paradigm for relapsing remitting MS (RRMS) is evolving, with greater emphasis on earlier treatment and escalation of therapy if there is clinical or sub-clinical evidence of disease activity5. This is against a backdrop of overall UK treatment rates which are currently lower than international comparators6. GEMSS has identified that, already, people with MS who are on disease modifying drugs (DMDs) have more contact with MS specialist nurses and neurologists than those who are not, and there is a real risk that as treatment rates increase, those with progressive forms of MS or who do not benefit from DMDs may miss out. Holistic management of MS symptoms in a multidisciplinary team and annual reviews for everyone with a diagnosis of MS are recommended in national guidance2, 7, but with finite service capacity this will be hard to achieve.

The MS Trust has therefore launched MS Forward View, a one year project within the GEMSS programme to look at how MS services can provide greater access to care, making best use of current resources and skills, and how best to measure the quality and equity of access to services for everyone with a diagnosis of MS. We will bring

together clinicians, specialised and local commissioners, professional bodies, experts in workforce planning, multidisciplinary educators, people with MS and the patient organisations and will produce an action plan to improve and measure access to care. This plan will also help define future education programmes for MS professionals. Early in 2016, the project team will be mapping MS neurologist and specialist nurses across the UK via a survey, and defining the different inputs needed by people with MS across the disease trajectory and what skills are required to deliver these. The result will be a set of options for new models of services that could enable greater access to care, using current resources differently or creating new roles or service models that could be tested. The MS Trust is excited about this new chapter of work and will be involving many MS professionals, as well as people with MS, in taking it forward. For more information visit www.mstrust.org.uk/health-professionals/ms-services-nhs/gemss/ms-forward-view

References:1. Mynors G, Suppiah J, Bowen A. Evidence for MS specialist

services: findings from the MS Trust GEMSS MS specialist nurse evaluation project. Letchworth: MS Trust; 2015.

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. Mynors G, Perman S, Morse M. Defining the value of MS specialist nurses. Letchworth: Multiple Sclerosis Trust; 2012.

4. Suppiah J, Mynors G, Bowen A. Generating evidence in MS services 2012-15: the process and outcomes of delivering an evaluation programme with specialist nurses and therapists. Letchworth: MS Trust; 2015.

5. Scolding N, Barnes D, Cader S, et al. Association of British Neurologists: revised (2015) guidelines for prescribing disease-modifying treatments in multiple sclerosis. Pract Neurol 2015;15(4):273-9.

6. Access to medicines for multiple sclerosis: challenges and opportunities. London: Charles River Associates; 2014.

7. NHS Quality Improvement Scotland. Neurological Health Services - Clinical Standards. Edinburgh: NHS QIS; 2009.

Figure 3. Contrasting models of MDT working within the GEMSS teams

Dorset Community Neurology Service operates as part of a community rehabilitation team, managing an ongoing caseload and using a ‘neuro-practitioner’ approach whereby all the nurses and therapists within the team have the knowledge and expertise to deliver holistic neurological assessment and case management, but also practice in their primary professional capacity based on a system of internal team referral.

The Walton Centre MS team includes physiotherapists, occupational therapists and an orthoptist working alongside neurologists and MS specialist nurses within a specialist neuroscience centre covering a large catchment population of around 3.5 million people. Their model uses joint multidisciplinary assessment and treatment planning, and people with MS are passed back to local AHPs if ongoing treatment is needed.

The Dundee MS physiotherapy service is part of the wider MS team based at Ninewells Hospital. The physiotherapists see people with MS for episodes of treatment, but deliver these from beginning to end via both clinics and home visits. Occupational therapy provision has been identified as a gap in the team.

www.mstrust.org.uk

16 Measuring the burden of hospitalisation in MSSue Thomas, Chief Executive, NHiS Commissioning Excellence, Nottingham

IntroductionA report1 jointly published in November 2015 by NHiS Commissioning Excellence and the MS Trust highlights for the first time, through the analysis of Hospital Episode Statistics, the burden that results from people with multiple sclerosis (MS) being admitted into hospital for emergency treatment. This is an important area to explore because anecdotally we are aware that people with MS are not getting the services they need, and this in turn leads to unnecessary hospital admissions which might be prevented if a more proactive approach to disease management was taken.

Measuring admissionsThere are around 90,000 people in England with MS, and between 2009-2014 there was a steady increase in their admissions to hospital. Whilst a large proportion of the elective admissions in MS can be attributed to daycase admissions for the administration of disease modifying drugs (DMDs), the non-elective admissions result mainly from the occurrence of a crisis. Non-elective admissions are therefore the major focus of this report, because these unplanned emergency admissions are costly to the NHS and could be preventable.

In the financial year 2013/14 there were 23,554 emergency admissions for people with MS which cost the NHS equating to nearly £500 for each person with MS in England. Despite emergency care being the minority of the total number of admissions into hospital, they account for a huge share when it comes to overall cost. In 2013/14 only 27% of admissions for people with MS were non-elective, but these accounted for 46% of hospital care costs.

Of the 23,554 emergency admissions recorded, they relate to only 14,960 unique individuals (17% of all the people with MS in England) and demonstrate that many of these emergency admissions are in fact re-admissions. 8,695 people with MS were admitted more than once, hitting the ‘revolving door’ of the emergency admissions unit or A&E.

Reasons for admissionWhy are people with MS being admitted to hospital? Headline results from the report reveal that the most common reasons for emergency admissions were preventable

problems such as urinary tract and respiratory infections, constipation and MS itself (including MS relapse). Bladder and bowel problems alone for people with MS cost the NHS £11 million in 2013/14, whist respiratory infections totalled in excess of £5.5 million.

Urinary tract infections (UTIs) accounted for 14% of all emergency admissions of people with MS, compared to only 3% of emergency admissions for the general population, in 2013/14, and on average the cost was £2,556 per admission. More education both for people with MS and their GPs could ensure earlier recognition of the problem, earlier treatment and admission prevention. Risk stratification of the MS population and accessibility to MS specialist nurses and continence advisors is needed to ensure that those at risk are placed on appropriate care management pathways.

Infections are also known to aggravate the symptoms of MS and could potentially exacerbate an MS relapse2 so should be a real focus for action. Many of the problems identified by the report could be prevented with greater emphasis on preventative care, by identifying patients at risk and addressing the issues before the onset of a crisis. MS specialist nurses are ideally placed to identify this group of patients and provide proactive care alongside GPs, neurologists, AHPs and community services.

This information should lead Clinical Commissioning Groups (CCGs) to seriously consider providing more proactive care management in the community, by reducing spending on emergency admissions this could allow CCGs to divert funds to more preventative care.

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17Geographical variationThe report also identifies the considerable variation seen in hospital admissions around the geographical regions in England. There are large differences in admission rates and costs between CCGs, even those within the same Strategic Clinical Networks. Some of the variation might be explained by coding practice for admissions and the follow up and review of patients, but in part it could also be due to variance in prevalence between different areas and reinforces the need for more prevalence studies to understand the variations.

Conclusion The report identifies the actions that are required at every level to ensure people with MS receive the healthcare services they deserve. Fundamental to achieving this is using data to inform service delivery in the future. It is essential that services for people with MS are planned carefully, and this can

only be done if CCGs have access to high quality data. Currently data, both national and local, is lacking, especially around the comorbidity issues that result in admission. Once this gap is filled commissioners can accurately plan services which provide the necessary level of integrated care and intervention needed to prevent many of the secondary complications of MS and to ensure that people stay as well as they can throughout their journey with MS. This report is one step forward in that direction.

Copies of the full report can be downloaded from:

www.nhis.com/commissioning-excellence/ms-report

References1. Thomas S, Mynors G, Simpson S, et al. Measuring the

burden of hospitalisation in MS: a cross sectional analysis of hospital episode statistics 2009-2014. Nottingham: NHiS and MS Trust; 2015.

2. Rakusa M, Murphy O, McIntyre L, et al. Testing for urinary tract colonization before high-dose corticosteroid treatment in acute multiple sclerosis relapses: prospective algorithm validation. Eur J Neurol 2013;20(3):448-52.

Auditing ‘admissions avoided’ by MS specialist services – a thorny methodological problemGeraldine Mynors, GEMSS Programme Manager, MS Trust

Sue Thomas’ article on the burden of hospitalisation in MS highlights the potential for MS specialist services to reduce admissions and thereby save NHS funds – funds which could be reinvested in specialist care. MS teams often ask how they can document and audit the admissions that they prevent: a fantastic idea in theory – but difficult to do consistently and reliably in practice!

There is no single definition of what constitutes an ‘avoidable admission’ or agreed criteria for recording an admission actually avoided1. Some teams joining the GEMSS programme had audits underway – sensibly taking a pragmatic approach and recording ‘avoided admissions’ in one of two ways. • A reactive approach: recording when they

felt an admission had been avoided that very day or week - in other words when they had put in place an emergency referral or care package that had prevented a patient in crisis from going into hospital or a residential home. The problem with this approach is that it doesn’t capture the many admissions which MS specialist services prevent over a longer time horizon by undertaking preventative work before a crisis arises. Ideally, people with MS shouldn’t get to ‘crisis point’.

• A proactive approach; recording when they responded to a patient with an MS

relapse, urinary tract infection or acute deteriorating symptoms, on the grounds that, had they not intervened, these problems could have deteriorated to the point where the person had to be admitted. However, whilst the first approach under-counts admissions avoided, this approach undoubtedly over-counts – as some problems are self-limiting and people with MS might successfully obtain help from another health professional if the MS specialist wasn’t around.

For this reason, in GEMSS we used the Dorset SNIAT tool (described in the GEMSS findings report2), to document preventative work as well as crisis management. It is hoped that this tool could, in future, be developed into an app which could be used more widely.

Another approach is to look at the actual rate of emergency admissions for people with MS in local CCGs around a specialist service

www.mstrust.org.uk

18

Professional development

MS Trust Conference 2015In November 2015, the MS Trust’s 19th Annual Conference took place in Windsor, Berkshire. This was our largest ever conference with around 375 health professionals attending the three-day event, 140 of whom were first time attendees. Here are some of the highlights.

Plenary sessionsThe future direction of neurology servicesDr David Bateman, National Clinical Director for Adult Neurology Conditions, NHS England, gave an overview of ways to improve neurology services, highlighting existing NHS initiatives and resources which could be exploited. Analysis of national NHS data collection services such as the Neurology Intelligence Network can identify variations in performance leading to improved care. New models of care, advocated by NHS England’s Five Year Forward View, create opportunities to take neurology services out of hospitals and into communities. Community-based neurology teams are already established in parts of the country; the NHSE Community Neurology Project aims to capture the expertise developed by these teams to help set up services in a range of different settings. Dr Bateman praised the winners of the MS Trust QuDoS awards as examples of good practice.

Looking to the futureProfessor Gavin Giovannoni, Professor of Neurology, Barts and the London School of Medicine and Dentistry, emphasised that acting early in the course of MS can influence

the future for an individual. He reviewed recent developments in treatment paradigms and clinical trial results for several drugs which show potential for remyelination, neuroprotection and anti-inflammation. He also reflected on the slow adoption of innovations, particularly in the UK, and highlighted the recently launched Brain Health initiative which focuses on early proactive treatment combined with a healthy life style.

Update on the TONiC studyDr Carolyn Young, Consultant Neurologist and Honorary Professor of Neurology, Walton Centre NHS Foundation Trust, Liverpool provided an update on the TONiC (Trajectories of Outcome in Neurological Conditions) project exploring the elements affecting quality of life (QoL) in MS. Based on work in motor neurone disease, TONiC has shown that while a factor such as fatigue might seem to have a low direct effect on QoL, it could have a major impact on elements that do, such as depression and anxiety. The focus of the project is now on recruiting pwMS within 12 months of diagnosis to complete questionnaires over a five year period.

Trigeminal neuralgia and MSProfessor Joanna Zakrzewska, Consultant and Head of Facial Pain Unit, UCLH NHS Foundation Trust, London, guided the audience through an overview of trigeminal neuralgia (TN) in MS, including its presentation, provoking factors, the consequences of long term TN and the treatments available. Prof Zakrzewska asked

and compare this to national benchmarks, as described in the burden of hospitalisation report3 (see page 16-17). There are still challenges – for example being able to attribute low rates of admission to the MS team as opposed to other local factors and services, and understanding local MS prevalence. However, this more objective, quantitative analysis can provide useful insights into how well services are doing in this area.

For MS services who still want to carry out local audits of ‘admissions avoided’, the advice would be to decide on clear criteria for defining an avoided admission, be explicit about the time horizon over which you are going to say you may have prevented an admission, and then document for each patient (maybe via a simple tick list) which criteria they met. It’s inevitably not an exact

science and relies on the subjective judgment of the professional recording the data – but the clearer you can be about the criteria you’ve used, the more credible your findings will be.

Do you have an audit tool for auditing avoided admissions which you would be willing to share with the GEMSS team? Please contact gemss@mstrust.org.uk

References:1. Purdy S. Avoiding hospital admissions: what does the

research evidence say? London: The Kings Fund; 2010. Available from: URL: www.kingsfund.org.uk/sites/files/kf/Avoiding-Hospital-Admissions-Sarah-Purdy-December2010.pdf [Accessed 24 Nov 2015]

2. Mynors G, Suppiah J, Bowen A. Evidence for MS specialist services: findings from the MS Trust GEMSS MS specialist nurse evaluation project. Letchworth: MS Trust; 2015.

3. Thomas S, Mynors G, Simpson S, et al. Measuring the burden of hospitalisation in multiple sclerosis: a cross-sectional analysis of the English Hospital Episode Statistics database 2009-2014. Nottingham: NHiS; 2015.

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19the audience for their help in collecting information to help determine the answers to questions such as how many people with MS have TN and how they respond to treatments.

Advances in stem cell therapies in the treatment of MSProfessor Neil Scolding, Consultant Neurologist, University of Bristol Institute of Clinical Neurosciences, Bristol, gave an excellent overview of research into stem cell therapies for MS. The approach at the most advanced stage of research is autologous haematopoietic stem cell transplantation (AHSCT). Prof Scolding guided the audience through the procedure, the risks and benefits to people with MS reported so far from trials and provided an overview of his own ACTiMuS stem cell study.

Seminar sessionsA full programme of seminar sessions covered aspects of MS, as well as a range of professional issues including:• relapse management• blood monitoring for the new disease

modifying drugs• issues in caring for people with advanced

MS including PEGs and palliative care

• communication and swallowing • understanding how research trials work

and their results.

PrizesPrizes awarded at the conference were: • Best poster: Gillian Burdon, MS Specialist

OT, Wye Valley NHS Trust – The Write Idea• Best Development Module students:

Fiona Roberts, Senior Occupational Therapist, MS Therapy Team, The Walton Centre NHS Foundation Trust, Liverpool (October 2014); Suzanne Wyton, Paediatric Neurology Specialist Nurse, Birmingham Children’s Hospital (March 2015)

• Best Way Ahead Article: Jane Stuchbury, Former MSc Student, School of Psychology, University of East London – To live every moment: exploring the concept of psychosocial flourishing in a group of single women with MS

• TiMS Trophy: Michelle Davies, Clinical Specialist Neurophysiotherapist, Dorset Neurology Service Disability Action, in recognition of her tireless contribution to the TiMS working group and GEMSS advisory group.

Competency framework for allied health professionals working with progressive neurological conditionsPeople with progressive neurological conditions such as Parkinson’s disease, MS and motor neurone disease require access to a multidisciplinary team to meet their ongoing needs. This team includes allied health professionals (AHPs), such as physiotherapists, OTs, SLTs and dietitians, who have specialist skills and experience in these conditions and provide support at key points in the patient care pathway.

The MS Trust, in partnership with the MND Association and Parkinson’s UK, are collaborating on a project that will identify and map the competencies of the various levels of AHPs within a neurological specialism. The project which launched in November, will start by focusing on three conditions: motor neurone disease, MS and Parkinson’s and the following health care professionals: dietitians, OTs, physiotherapists and SLTs.

The project working group includes representation from the selected professions, and consultation with their professional bodies. There will also be collaboration with the Neurological Alliance.

The output of the project will be an accessible resource for use by practitioners and those who manage and commission services. This will be delivered by June 2016. The desired outcomes are: • to reduce the erosion of team effectiveness

caused by role change or post deletions occurring due to ignorance of the optimum combination of skills and competencies for a team

• increased commissioner/manager knowledge about specialist AHP neurology roles, and an appreciation of their importance

• improved commissioner/manager understanding of how the most effective team can be constructed through appropriate staffing levels and their associated skills

• practitioners will use the resource to defend posts and or roles under threat.

Dependent upon the success of this first phase the resource may be developed to include other conditions.

For more information contact: kerry.yates@mstrust.org.uk

Multiple Sclerosis TrustSpirella Building , Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ETT 01462476700 F 01462476710 E info@mstrust.org.uk www.mstrust.org.ukRegistered charity no. 1088353

Supporting the MS Trust

Cycle from London to Paris as part of our official charity team20-24 July, 2016

The MS Trust has a fantastic opportunity to raise funds this year as we have been selected as the official charity partner for the special Tour de France edition of the London to Paris cycle ride in July. We already have a great team of over 30 people signed up but there are lots of places still available.

There’s plenty of time for training even if you’re not an experienced cyclist. We will provide a training guide that advises on the type of bike to use, what clothing to wear and what to eat and drink, as well as a detailed 16-week training schedule. We will also provide fundraising ideas and materials to help you reach the £1,460 sponsorship target.

Cycling from London to Paris is one of the greatest European cycle experiences. There will be long days in the saddle and some strenuous hill-climbs, but the picturesque countryside, camaraderie with your fellow riders and the sense of achievement when you reach the Eiffel Tower will make this a really memorable adventure.

As an extra special bonus, the final day of this London to Paris cycle ride coincides with the 2016 Tour de France finale. So, the day after you have finished your own cycle challenge, you will have the chance to watch the Tour de France riders race to the finish line on the Champs-Élysées.

If you don’t fancy taking part yourself, we would be very grateful if you could help us by telling your friends and family about this event, displaying a poster somewhere or sharing the link on social media.

To find out more about the London to Paris Tour de France cycle ride, or to request a poster, please call Laura on 01462 476707 or visit www.mstrust.org.uk/londontoparis

RideLondon: one day, one hundred miles31 July, 2016

The RideLondon-Surrey 100 is a great cycle event for anyone looking to set themselves a serious distance challenge, but without such a big time and fundraising commitment as the London to Paris. This event gives you the opportunity to ride 100 miles on closed roads on a route made famous at the London 2012 Olympic and Paralympic Games.

We already have a few teams and individuals registered but there are around 30 places still available. If you’re interested in taking part on your own or with friends or colleagues, please get in touch.

To find out more visit www.mstrust.org.uk/ridelondon

Cycling and family fun at Goodwood15 May, 2016

Join us for a fun-filled day out at the Goodwood Motor Circuit near Chichester. We kick off with a 50 mile cycle challenge in the morning, then in the afternoon we invite you to get around the 2.38 mile circuit ‘by any means’, being as inventive as you wish.

The afternoon event is suitable for all ages and abilities and it’s easily accessible for users of wheelchairs or mobility scooters. You can even bring your dog! There will be something for everyone throughout the day and plenty to entertain the kids including a bouncy castle, face painting and tombola.

For more information visit www.mstrust.org.uk/goodwood

John Pohorely, MS Specialist Nurse at Goodwood