The driving force behind the MS Variance meeting came from another event the Neurology Academy hosted earlier this year: the debate over the pros and cons of the new NHS England MS algorithm for disease-modifying treatments (DMTs). That one algorithm meeting threw up a whole array of discussion points, and we heard viewpoints across health and industry, both in favour of, and cautious about the future of MS treatment with the algorithm in place.
Whilst the algorithm is just one element of the broader picture around equity of access and optimal care for multiple sclerosis (MS), it is a big piece of the puzzle, with DMTs being the most effective means of managing the condition for the biggest proportion of the MS community – those with the relapsing-remitting form of the disease. Recent discovery that the DMT Ocrelizumab could be the first treatment to manage primary-progressive MS means that this form of medical support may be opening up to an even wider cohort of patients – and that equity of access may mean the difference in quality of life for far more people.
Why do we need the algorithm?
On 2nd November, Waqar Rashid addressed the 100+ strong audience regarding the algorithm. Setting the scene, he highlighted that this field of treatment is high paced, which while positive for patients, means it has been a struggle for the NHS to keep up with the level of change needed. The range of DMTs available enable patients to have a real choice in finding the treatment that works for them, but the regulations around the treatments and the variety of monitoring requirements that go alongside this is all less clear.
Waqar highlighted that a quarter of a billion pounds has been spent on DMTs to date, but despite this investment, the regional variation is huge and the consensus on optimal treatments is lacking. In comparison with other conditions who utilise this form of treatment, such as rheumatology which has a clearer pathway and more parity around treatments prescribed, MS treatment is largely determined by local practice, prescribing preferences and commissioning history.
The solution to this challenge? The algorithm. This tool has the difficult task of providing a working framework while understanding that there is no one right or wrong route – and to do so within the bounds of existing language and parameters as set out by NICE guidance.
‘There is no right or wrong route’
‘Some variation is inevitable – people are individual, their MS is individual, and different approaches may lead to different outcomes – we need to record and share information so we know what’s working and why.’
This succinct summary of the reason why there is so much variation in prescribing and treating MS was given from the floor during the discussions following Waqar’s presentation, and was echoed by a large proportion of the room. So some variation is not only positive, but necessary, it would seem.
In being able to provide people with MS with the range of choice wanted, and to respond to the very individual nature of everyone’s MS, there will be variation. However, to ensure that variety does not mean disparity, agreeing a core set of treatments and the way they will be provided and monitored is necessary. This raised a number of points from the floor, including that the decision around what drugs are used should be made ‘in correspondence with the MS population – it’s no good agreeing what should or can be used and only being able to provide it for 5% of MSers.’
Some attendees shared concerns about the level of profile and discussion that DMTs hold across the whole MS community, noting that equity of access to other treatments also needs attention. A positive response to this view was shared:
‘It’s not all about DMTs but there’s a lot we can do through them – maybe if we take this as the low-hanging fruit, everything else will follow.’
Evidence-bases need evidence gathered
The same clear voice who argued the necessity of variation followed up with a solution to ensuring its safety – ‘we need to record and share information so we know what’s working and why.’ Discussing positive variation led naturally to data gathering and the room agreed unanimously that local benchmarking and evidence gathering is essential to improving services and support.
A wide range of thoughts ensued with the common agreement that both transparency and accountability in each practitioner’s own individual prescribing is essential – but that the types of information gathered need to be consistent across the country to ensure a weight of evidence is available and that comparisons can be drawn.
One practitioner agreed wholeheartedly with the need for transparency but highlighted the burden placed on teams by frequent Freedom of Information (FOI) requests coming from a whole host of different stakeholders. His view was that, in agreeing the forms of information to be gathered, we should also gain commitment from the whole community involved that these findings be made available and accessible to the wider public. If all can view this meaningful data it would hopefully remove the need for regular FOIs.
The administrative burden felt in the gathering and recording of data was echoed by others who felt that one set of data to gather should be agreed on – but not in addition to the reams of other information currently being gathered. An overarching decision on the core information needed would be very welcome. To record the right data which can be shared as widely as needed would reduce administrative time and free up valuable time for practice itself.
Professor Gavin Giovannoni, chair of the overall MS Variance event and an eminent voice in the Algorithm debate, shared that NHS England have agreed to a simple and mandatory annual audit for all MS centres. This will provide the information needed to have outcomes-based evidence to inform future practice.
The lines that are drawn
The final problem with the algorithm seems to lie in the amount of elements which have been adopted directly from NICE guidance. Whilst this seems to be a sensible step, in reality it has drawn some arbitrary lines that do not allow for assessment of the person and the way they manage their MS and their lives. One of those key elements which was debated thoroughly is the requirement to cease treatment with DMTs if the person with MS becomes reliant on a wheelchair.
Practitioners shared from the floor tales of patients who use a wheelchair and have other disabilities, and yet are very positive, self-sufficient individuals who are still working or contributing to society in other ways. As one practitioner put it, ‘surely if someone has only got the full use of one limb, it becomes even more important to preserve that use?’
Ultimately, the debate around the algorithm raised as many unanswered questions as it met, and yet it does seem that consensus in the room was supportive in our need for a framework and an agreed way of using DMTs. The take-home message from this session was ultimately summarised from the floor:
‘The Algorithm tells us what we’re allowed to do, not necessarily what we want to do – but it’s a starting point and we need to build on this.’
Watch this presentation:
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For more information:
- Find the NHS Algorithm here
- Read more on the debate on the NHS algorithm from earlier this year or listen to video podcasts from a range of different perspectives.
- This ‘Spotlight on…’ article touches on the monitoring associated with DMTs – which is currently uncommissioned and therefore unfunded. Find out more about the research project unpicking the true cost of treatment and helping us formulate better and more accurate pathways for this element of MS care.
- The costs associated with DMTs are high, and MS Society is currently funding research into the cost of not treating with DMTs. Find out more.
- These ‘Spotlights’ will give you an in-depth look at some of the key issues raised at the Variance event.
- Follow the overarching movement to reduce MS service variation on Twitter #MSVariance
Posted in: MS Service Provision: Raising the bar