Time matters: should British people with MS accept sup-optimal care? 


 
MAY 18 • 11M
Time matters: should British people with MS accept sup-optimal care?
In the #AttackMS trial we are comparing starting natalizumab within 2 weeks of symptom onset to those starting natalizumab after 2 months. Yes, we really think time matters in MS.
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 GAVIN GIOVANNONI   

Nothing is hidden. If you look carefully, you will find all you need to find. In the study of newly diagnosed Scottish patients with MS, close to 40% had hidden disabilities such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain. Are these MS-related problems really hidden? Yes, hidden from the eye but detectable by simply asking the right questions and assessing the function of the nervous system using standard techniques. 

A remarkable 26% of subjects were on antidepressants, 18% were unemployed, 36% had motor difficulties, 36% had balance, incoordination, double vision or swallowing problems and 12% had bladder or bowel problems at symptom onset. 

These observations are not new and have been well documented in other studies. This study confirms that early MS is not really early MS, and a large proportion of pwMS have evidence of the damaging effects of untreated inflammation on the function of the nervous system. 

In the majority of these subjects, the hidden symptoms remained unchanged, but in approximately a quarter, the symptoms improved after the diagnostic period. DMTs had no major influence on the hidden disability burden over a period of about one year. However, subjects treated with fingolimod and cladribine, higher efficacy DMTs, had a more favourable outcome. Is this not an argument for flipping the pyramid and using high-efficacy DMTs first-line in more pwMS? Is it not time to leave the less effective platform therapies as a historical footnote? In this cohort, over 1 in 5 patients were started on injectables (interferon-beta or glatiramer acetate).

What is quite remarkable is that this study represents 45% of the newly diagnosed people with MS in Scotland over the study period, with an average time between symptom onset and diagnosis of 18 months. This is a problem. If early inflammation imprints on the brain and spinal cord, waiting 18 months to be diagnosed and then a further period of time to be started on treatment comes at a cost. Unfortunately, the latter information is not reported in the paper. I am aware from other studies in the UK that the time from diagnosis to initiating DMTs is variable and can take anything from 2 months to 9 months depending on the kind of service the patients attend, i.e. a specialist centre versus a district general hospital requiring patients to then be referred to a specialist centre for treatment.

These delays due to systemic problems in the NHS cost our patients’ brain and spinal cord. These delays are the main reason we produced the ‘Brain Health: Time Matters’ policy document and the follow-on quality standards (see paper 2 below) to try and create the carrot and stick to sort out the unnecessary and unacceptable delays in the diagnosis and management of pwMS.

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We are even taking this ‘Time Matters’ approach to the extreme with our #AttackMS trial, in which we are comparing pwMS started on natalizumab within 2 weeks of symptom onset to those starting natalizumab after 2 months. Yes, we really think time matters in MS; this study will tell us if weeks matter.

In our International Quality standards, which were developed by international consensus, we state the diagnosis of MS should be made within 2 months and a DMT treatment offered within a similar timeframe. Please note these are just the core standards, and we challenge the MS community to do better than this.

Consensus standards for timely, brain health-focused MS care agreed by at least 75% of the Delphi Consensus Panel related to (a) referral and diagnosis, (b) priorities following diagnosis, (c) routine monitoring and support, (d) treatment decisions, (e) new symptoms and (f) additional statements that were not time limited.

Sadly the NHS fails on these metrics, and the costs to pwMS in the UK is likely to be substantial. What can we do about it? We need more resources and a more responsive system to deal with MS. This can be done. The NHS has proven that if there is a will, there is a way to achieve things. It has been done for the management of stroke and, to some extent, with the two-week pathway for suspected cancer. Why can’t we get a 2×2 month pathway for the diagnosis and treatment of MS? Is this too little to expect from our national health service?

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Paper 1

Glasmacher et al. The influence of disease-modifying therapy on hidden disability burden in people with newly diagnosed relapsing-remitting multiple sclerosis. Mult Scler Relat Disord. 2022 Apr 30;63:103837. 

Background: In addition to motor disability, “hidden disability” such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain is a major complaint of people with multiple sclerosis. We explored changes in hidden disability burden in the early post-diagnostic period and examined the hypothesis that disease modifying therapies have a beneficial effect on hidden disability burden.

Methods: Adults with recently diagnosed (< 6 months) relapsing-remitting multiple sclerosis (n = 440, mean age 37.4 ± 10.4, 76% female), from a national multicentre cohort study (FutureMS) underwent testing with clinical and neuropsychological instruments as well as brain MRI at baseline and after 12-months. Disease modifying therapies were only started after baseline assessment and were classified into injectables (n = 70, interferons, glatiramer acetate), other DMTs (n = 215) and no DMT (n = 117, reference). Sensitivity analyses were undertaken using alternative classifications (disease modifying therapy vs none, and a 3-category system). We performed latent transition analysis with hidden disability burden as the latent variable including propensity score weights.

Results: We identified three classes with low (58%), moderate (25%) and high (17%) hidden disability burden. 70% did not transition (“unchanged”, reference), 26% transitioned into a lower burden class (“improvement”) and 4% transitioned into a higher burden class (“worsening”). Median treatment duration was 11 months (IQR 9-12). Injectables [OR 1.3 (95%CIs 0.7, 2.3); P = 0.4] and other DMTs [OR 1.4 (95%CIs 0.9, 2.1); P = 0.2] were not associated with significant change in hidden disability burden in either direction (“improvement” or “worsening”). In the alternative 3-category classification, category 2 treatment (fingolimod, cladribine, n = 22) was associated with improvement [OR 4.3 (2.6, 7.0); P < 0.001].

Conclusion: Hidden disability was present in most newly diagnosed people with multiple sclerosis. The majority remained unchanged and approximately a quarter improved over the immediate post-diagnostic period. Disease modifying therapy had no significant influence on hidden disability burden in the study period of one year following diagnosis. The trend towards favourable outcomes with fingolimod and cladribine should be interpreted with caution due to the small sample size. Our exploratory data are observational, with scope for attendant biases, but highlight the need for further study including longer-term evaluation as well as randomised trials for non-motor disability.

Paper 2

Hobart et al. International consensus on quality standards for brain health-focused care in multiple sclerosis. Mult Scler. 2019 Nov;25(13):1809-1818. 

Background: Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to improve outcomes in people with MS.

Objectives: We sought to develop internationally applicable quality standards for timely, brain health-focused MS care.

Methods: A panel of MS specialist neurologists participated in an iterative, online, modified Delphi process to define ‘core’, ‘achievable’ and ‘aspirational’ time frames reflecting minimum, good and high care standards, respectively. A multidisciplinary Reviewing Group (MS nurses, people with MS, allied healthcare professionals) provided insights ensuring recommendations reflected perspectives from multiple stakeholders.

Results: Twenty-one MS neurologists from 19 countries reached consensus on most core (25/27), achievable (25/27) and aspirational (22/27) time frames at the end of five rounds. Agreed standards cover six aspects of the care pathway: symptom onset, referral and diagnosis, treatment decisions, lifestyle, disease monitoring and managing new symptoms.

Conclusion: These quality standards for core, achievable and aspirational care provide MS teams with a three-level framework for service evaluation, benchmarking and improvement. They have the potential to produce a profound change in the care of people with MS.

Subscriptions and donations

Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite that is currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription, to please subscribe. For active paying subscribers, thank you; your contribution is much appreciated. 

Volunteers please

We have a charity collection on Saturday 11th June at Didcot Tesco.  I am looking for 2 people per 1.5hr time slot to collect small change for the centre.  We try and have 2 people per collection for 1.5hrs.    Our last collection there (which was our first at Didcot) raised : £650, so it’s well worth it.  Please help if you can.  If you are able to help please contact Sue.
Time slots are:

9.00

10.30

12.00

13.30

15.00

16.30

UNLIMITED £5 donations for Multiple Sclerosis Therapy Centre Oxfordshire

 
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Pregnancy and Multiple Sclerosis Online Workshop on 24 May

MS-UK are running a workshop with Dr Ruth Dobson who will be presenting her work on the ‘UK consensus on pregnancy in multiple sclerosis’ published in the British Medical Journal (BMJ). 

The workshop takes place online on Tuesday 24 May 1.15pm to 2.15pm.

The consensus was developed for clearer guidance for individuals and their treatment of MS during pregnancy and to encourage conversations between expectant parents and clinicians.

In this presentation, Dr Dobson will cover the main areas from the guidelines which include;

• Pregnancy counselling

• Management during pregnancy

• Delivery and anaesthetic options

• Postpartum advice

• Disease-modifying drug treatments

If you can’t make the session live, don’t worry as MS-UK will be recording the presentation and will make it available to watch again for all those registering in advance.

There is a suggested donation of £5 for this information session, but you can make a donation of your choosing from £1 to attend.

Sign up on Eventbrite here

If you would like to know more about this session or would like help registering, please email register@ms-uk.org

Make sure people with MS can access FES

The MS Society need your help to ensure that Functional Electrical Stimulation (FES) is consistently funded and prescribed for people with MS across the UK.

FES is a treatment used to stimulate movement in weakened or paralysed muscles. It has been proven to improve the lives of many people with MS, making walking easier and reducing the effects of foot drop.  This allows people to more easily take part in daily living and social activities as well as feeling more confident and independent.  Despite this, FES is not being funded consistently across the UK.

How you can help

Click here to write to your local health body to ask if they are providing this potentially life-changing therapy. The MS Society are holding a webinar for healthcare professionals later this month to ensure that they understand the benefits of FES. When you send your email to your local health body, they will be sent details of the webinar so they can sign up to attend.

FES at the Centre

We are able to offer FES assessments for foot drop and if suitable short-term loan of an FES machine for our members to trial at home. If appropriate we are then able to refer on to the NHS Specialist Functional Electrical Stimulation service based at Salisbury Hospital. If someone would like an FES assessment please speak to your Physiotherapist or email anwen@bmstc.org. There is also more information on our FES website page

Fancy a trip on a boat?

Wallingford Accessible Boat Club are a charity that are enabling disabled and elderly people to get out on the River Thames.  Start point currently Benson Marina.  2hr trip.  No cost involved though donations appreciated.  Takes 6 passengers dependent on number and size/weight of wheelchair including carers.  I thought it would nice to arrange a trip for some of our MS members.  If you are interested, let Sue know and we will try and organise something……….

Enable Magazine: Presenting the May/June issue

Presenting Enable Magazine
May-June issue

The UK’s leading disability and lifestyle title

Introducing the May-June issue of Enable Magazine.
We’re so excited to share this issue with you and your network.

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This issue, we’re marking Carers Week by highlighting four unpaid carers’ unique experiences. Caring can come in many different forms including becoming a foster carer: we learn about the path to fostering with a parent. Also inside, disabled voices share everything from the best accessible beauty products to the power of finding your true self. A parent and a young woman discuss the long-term effects of meningitis, and we go behind the scenes of a project that could change the future of Alzheimer’s research.

Plus, we’re helping you get ready for summer with activity and holiday inspiration, and two parents share their tips on preparing for a trip with an autistic child. As the cost of living increases we spotlight ways to save money and help you get informed about pensions, before speaking with a volunteer about transferable skills and answering your employment questions with founder of Evenbreak, Jane Hatton.

Council tax reductions for disabled people

If you meet certain conditions, you can get a reduction of one council tax band on your bill each year. For example, a Band D property will be charged Band C. Look on your council website for more information.

VAT on some building works and adaptations for disabled people

Certain types of building works and adaptations eg wetrooms are zero rated. The contractor should be aware of this but may need reminding.

CEA card

The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema. It costs £6 pa. Their website is www.ceacard.co.uk

Dr Terry Wahls: Improving MS with Diet

Multiple sclerosis (MS), is an auto-immune condition affecting more than 1 million Americans.And like other autoimmune conditions, it it’s becoming more prevalent.The role of genetics in MS is not significant.Lifestyle choices however may play important roles in regulating the immune system, and therefore should certainly be looked at as it relates to this and other autoimmune conditions.My guest today, Dr. Terry Wahls, is herself a multiple sclerosis patient.On the podcast she describes how aggressive her multiple sclerosis became, how she herself did not seem to realize any dramatic improvement from pharmaceutical intervention, and how she ultimately discovered the important role of nutrition in terms of regulating her immune system and as such, the disease course of her multiple sclerosis situation…
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Zoom details for AGM on 9th June at 3pm.

ANNUAL GENERAL MEETING 

Due to the unusual circumstances again this year and social distance measures the AGM will take place via a zoom* meeting on:

Thursday 9th June, 3pm

The code is 718 389 8662

Password: OMSTC (uppercase)

*If you need to know how to access Zoom, contact Sue, if you do not have a speaker or microphone on your PC, you can use your phone.

Nominations and seconders are requested for a max of 10 Committee members.  They must be emailed to Sue at ms.therapy@btconnect BEFORE the meeting.

(Nominations can only be accepted for paid up members and can only be made by paid up members.)

The Officers of the Company will be elected from the Committee Members

They will consist of :   a Chair, a Treasurer and a Secretary

If you are unable to attend the meeting to vote you may appoint a proxy to vote for you.