Thursday, 30 June 2016

NewsSpeak & MSLondon: London MS Specialist Network

What should we do with the London MS group? #NewsSpeak #MSLondon #MSBlog

"I am one of the founder members of the London MS Group (LMSG), a loose network of London-based MSologists. We started the group just over 10 years ago. The aim of the group was for neurology consultants with a specialist interest in MS to meet 3-4 times a year to discuss issues in relation to the management and treatment of MS. Invitations are sent out to a list of neurologists who see people with MS at 7 regional neuroscience centres in and around London (Imperial College, St Georges Hospital, Kings College, Queen Square, Barts-MS, Royal Free and Queen's Romford) and from the regional feeder hospitals. The turnout of for the LMSG meetings has been highly variable and has becoming increasingly poor. Why? I suspect there are many reasons for this, but increasing numbers of competing commitments and meeting fatigue are the main reasons."

"We had a meeting last night and only 6 neurologists turned up; on one occasion only 3 neurologists attended. We decided last night to rejuvenate the group, change its name, expand its remit and formalise it as a registered organisation. We all agreed that London MS centres are at the vanguard of MS service development, treatment, management and research in the UK and we need a voice and a platform to promote this. As this organisation will impact on the management of close to 25,000 people with MS living in and around London it would be useful if you could tell us what you would want from this organisation. Should we include non-neurologists and other stakeholders? What about people with MS? Should we use the organisation to publish guidelines and set standards? For example, should we include the London MS-AHSCT Collaborative Group under the umbrella?"

GameSpeak & ClinicSpeak: Can we gamify MS life skills?

Can healthcare be delivered via a game? #MSBlog #GameSpeak #ClinicSpeak #BrainHealth

"Engagement and adoption is the biggest problems facing healthcare innovators, or wannabe healthcare innovators like me. We can come up with an idea very 5 minutes, but unless we can implement them, get them adopted, show that they have an impact on outcomes and are cost effective we are wasting our time and your time. On the other side of the coin getting the target population to change their behaviour is remarkably difficult. The paper below describes turning the process into a game with the hope that this will change behaviour. The downside of this is that not everyone necessarily likes games. What do you think? Could we design a game to nudge MSers to improve their lifestyles with the hope that it will improve outcomes? If you have any ideas or examples, in particular around Brain Health, I would be very interested to know about them. Please remember the game may also involve healthcare professionals."


Giunti G. Gamified Design for Health Workshop. Stud Health Technol Inform. 2016;225:605-6.

Increasing lifespans for chronic disease sufferers means a population of young patients who require lifestyle intervention from an early age. For multiple sclerosis (MS) patients, social problems begin with the decline of cognitive skills and their quality of life is affected. In this workshop, organizers will propose participants to work on different gamification design approaches to solve MS patients' engagement problem. Participants will obtain skills that can be extrapolated to other conditions that require patients change to adopt a different behavior. At the end, participants will present their proposed gamification design and discuss and comment each solution, assessing potential unintended outcomes and advantages.

Gut Microbiota is different in MS

Chen J, Chia N, Kalari KR, Yao JZ, Novotna M, Soldan MM, Luckey DH, Marietta EV, Jeraldo PR, Chen X, Weinshenker BG, Rodriguez M, Kantarci OH, Nelson H, Murray JA, Mangalam AK. Multiple sclerosis patients have a distinct gut microbiota compared to healthy controls.Sci Rep. 2016 Jun 27;6:28484. doi: 10.1038/srep28484.

Multiple sclerosis (MS) is an immune-mediated disease, the etiology of which involves both genetic and environmental factors. The exact nature of the environmental factors responsible for predisposition to MS remains elusive; however, it is hypothesized that gastrointestinal microbiota might play an important role in pathogenesis of MS. Therefore, this study was designed to investigate whether gut microbiota are altered in MS by comparing the fae
cal microbiota in relapsing remitting MS (RRMS) (n = 31) patients to that of age- and gender-matched healthy controls (n = 36). Phylotype profiles of the gut microbial populations were generated. Detailed faecal microbiome analyses revealed that MS patients had distinct microbial community profile compared to healthy controls. We observed an increased abundance of Psuedomonas, Mycoplana, Haemophilus, Blautia, and Dorea genera in MS patients, whereas control group showed increased abundance of Parabacteroides, Adlercreutzia and Prevotella genera. Thus our study is consistent with the hypothesis that MS patients have gut microbial dysbiosis and further study is needed to better understand their role in the aetiopathogenesis of MS.

Gut bacteria is a hot topic in science as it may help shape the immune response and this study says it is diiferent in MS. This will need repeating. We will see if feacal transplants affect MS as people have this procedure done. But what happened in other studies

Tremlett H, Fadrosh DW, Faruqi AA, Zhu F, Hart J, Roalstad S, Graves J, Lynch S, Waubant E; US Network of Pediatric MS Centers. Eur J Neurol. 2016 May 13. doi: 10.1111/ene.13026. [Epub ahead of print]

"Relative to controls, MS cases had a significant enrichment in relative abundance for members of the Desulfovibrionaceae (Bilophila, Desulfovibrio and Christensenellaceae) and depletion in Lachnospiraceae and Ruminococcaceae" 

 or Bacteroidaceae, Faecalibacterium, Ruminococcus, Lactobacillaceae, Clostridium, and other Clostridiales. Compared with the other groups, untreated patients with multiple sclerosis had an increase in the Akkermansia, Faecalibacterium, and Coprococcus genera after vitamin D supplementation.

So no consistency so it is hard to know what this really means

Wednesday, 29 June 2016

GuestPost & NurseSpeak: Amy Bowen on MS Clinical Nurse Specialist Education

The clinical microsystem is where workplace motivators reside #MSTrust #MSBlog #NurseSpeak

The larger organization can be no better than the sum of its frontline units #MSTrust #MSBlog #NurseSpeak

Prof G got in touch with me last week after having received an anonymous email from an MS nurse who was really disappointed that the blog might be stopping. The nurse was pleading with Prof G not to stop because of how reliant this nurse is on the blog for an independent perspective on all things MS, especially the research data. All very positive and encouraging to the Barts team, I hear you say, and of course we know that the blog lives on, so no problem apparently.



Amy Bowen, Director of Service Development, MS Trust

But the nurse also revealed a deeper and much more worrying reason for relying on the blog. The nurse revealed that there was very little support for ongoing learning coming from either the neurologist in the team or from the NHS organisation the nurse works for. (I don’t know if this nurse is male or female but to make this easier to write and just to mess with the stereotype, let’s assume the nurse is a male. I will refer to the nurse as ’he’ from now on.)

Like multi-story carpark crime, this is wrong on so many levels (ref Tim Vine). He felt that the neurologist that he works with had no real interest in cascading the learning that she (still messing with stereotypes, so the neurologist is a woman) gains from the many educational opportunities available to medics. She keeps them essentially to herself or amongst her neurology peers and doesn’t treat that as learning that is for the benefit of the whole MS team and so should be shared widely and generously.
The NHS organisation severely restricts the nurse’s access to educational events targeted at him. He does attend the occasional pharma industry funded events, often in his own time, but with a healthy caution about the data that is being presented (the nurses’ own words). He is also struggling to get time and support to attend the MS Trust’s annual conference, the largest event of its kind in the UK.

The MS Trust has always led MS nurse education and professional development. Alongside our conference, which is regularly attended by around 300 MS health professionals we also oversee the training for all new in post MS nurses and we fully fund virtually all of the NHS nurse places. We also offer bursaries for allied health professionals. We produce competency frameworks for MS nurses and for MS AHPs. We run a user survey service free to any MS team in the UK. We run our GEMSS programme, to help teams collect evidence about the value and impact of what they do and embed an improvement mindset into the whole team. We know all the teams and will come running whenever they have a problem securing their service. All of this from a Health Professionals Programme team of six and a shoestring budget. People think it’s the NHS making MS education happen, but I can assure you it is not. There is no money, it has no priority and they don’t know enough about MS specialist practice to deliver it as well.

Why do we do it? Is it really the work of a charity? Absolutely. We believe that everyone with MS should have a skilled and supported MS specialist team because they understand the complexities and variability of MS best and they are best placed to make care better. We can make a greatest difference for the greatest number of people with MS if we work with services to make them skilled, accessible and equitable.

Recently, one of my colleagues heard Chris Ham, Chief Executive of the Kings Fund, speak at the NHS Scotland conference on quality improvement. He apparently gave a really energising talk about, amongst other things, the concept of a clinical microsystem. So much emphasis is put on whole system redesign in the NHS – shifting resources around, integrating services that have historically had discrete boundaries (like between health and social care), moving decision making power nearer to or further from clinicians. Pulling the big levers that can theoretically have the greatest structural effect. Clinical microsystems are the complete opposite.

The concept is that the closely knit front line team, with a shared mission, is actually a really powerful unit of care that can make a massive change in patient experience, safety and outcomes. If they have scope to move beyond bureaucracy, they are able to define and pursue their common objectives, work collaboratively and make changes in their culture and their processes that they know will make a difference. They know this because they are living and breathing the delivery of the service every day and are right up close to the needs of the patients they serve. The textbook on clinical microsystems Quality by Design makes this point:

The clinical microsystem is the basic building block of any health care delivery system. It is where professional identity is formed and is transformed. It is the unit in which espoused clinical policy is put into practice (clinical-policy-in-use). It is the place where good value and safe care are made. Most variables relevant to patient satisfaction are controlled here, and this is where most health professional formation occurs after initial professional preparation. The microsystem is where workplace motivators reside. The larger organization can be no better than the sum of its frontline units, or microsystems.

The point is that MS teams need to find the strength that comes from shared learning, data-driven dialogue about service improvement and a humble determination to hear what their service users are telling them about how best to deliver care. They need to take ownership of that knowledge and be prepared to work together to change their practice and their services. Knowledge is a shared asset, not a tribal secret. Neurologists need to value their nursing and allied health professional colleagues enough to make their specialist competence as important as the medics. People with MS rely on their MS nurse from information, clinical expertise and skilled management. They are the health professional they see more than anyone else. And, as for NHS Trusts, if they don’t invest in their staff, they will lose them and everyone will suffer.




1. Nelson E, Batalden P, Godfrey M. Quality by Design: A Clinical Microsystems Approach San Francisco; Wiley 2007. p.235.
2. Evidence for MS specialist services: findings from the GEMSS MSSN evaluation project. MS Trust 2015. p.36.

Use of Off label Drugs in Italian Centres

D'Amico et al. The Use of Immunosuppressant Therapy for Multiple Sclerosis in Italy: A Multicenter Retroprospective Study. PLoS One. 2016; 11(6):e0157721.

INTRODUCTION: Immunosuppressive agents (ISA) have been used in multiple sclerosis (MS) for decades, frequently as off label licensed therapies. Given the new MS treatment landscape, what place do ISA have in combating MS?

METHODS: We conducted a retrospective multicentre study to investigate the frequency of ISA prescription in 17 Italian MS centres, and to describe the clinical factors related to ISA use.


RESULTS: Out of 6,447 MS patients, 2,034 (31.6%) were treated with ISA, with Azathioprine being the most frequently used ISA overall. MS patients treated with ISA alone were more frequently affected by the progressive course (both primary and secondary) of the disease (RRR 5.82, 95% CI 4.14-8.16, p<0.0001), had higher EDSS (RRR 3.69, 95% CI 2.61-5.21, p<0.0001), higher assignment age (RRR 1.04, 95% CI 1.03-1.06, p<0.0001) than patients treated with only disease modifying drugs (DMDs).


CONCLUSIONS: Progressive course, higher EDSS, higher assignment age were the strongest predictors of ISA prescription and use in our population.



You can read the paper.
6,447 patients were analysed. A number of 4,413 (68.4%) were treated with DMDs (INFs or GA) and 2,034 (31.6%) with ISA. Out of 2,034 ISA treated patients, AZA was the most frequently used in monotherapy (41.4%), followed by mitoxantrone (24,4%), then cyclophophamide (7.9%) and Methotrexate (4.4%). The 21.9% of the whole group assigned to ISA treatment had used more than one single ISA drug

DrK has been banging on about use of generic cladribine, but how many neuros in UK would use off-label DMT?  

However, maybe he is wasting his time with the Brits and maybe he should be talking to his Italian Colleagues. Based on this post it is clear that neuros in Italy are willing to try off label drugs as they are prescribing Azathioprine and other unlicenced drugs. However based on results recently published it would seem that azathioprine is being used, 



Based on the data above,  azathioprine  is in the league of the interferons, so  is not going to be as good a NEDA inducing drug as cladribine. So would Italian Neuros try something that may be more active.

However when the off label drugs are being applied they are being used in people with progressive MS and so one would think they are going to have no/modest activity. 

Remember what ever you take you need to be NEDA have you read  http://www.msbrainhealth.org/