Barts-MS rose-tinted-odometer: ★★
If you don’t measure it you can’t change it. The fact that the UK was performing so poorly relative to other EU countries on the EMSP’s MS barometer was one of the reasons why I got into MS politics and helped put together the ‘Brain Health: Time Matters’ policy document.
In 2015, despite being the second wealthiest nation in Europe, the UK was in the bottom three of the EU league table in terms of prescribing DMTs, particularly high efficacy DMTs. Fortunately, things have improved slightly and we are now mid-table, but way below average (see figure below). Is this good enough? NO! The under-treatment of MS in the UK will obviously be linked to poorer outcomes, i.e. more disabled, more unemployed, more demented and smaller-brained people living with MS in the UK compared to comparator countries above us in the league table.
I am often asked if I had MS what country would I want to live in to have my MS treated. I rarely hesitate, it has to be either Sweden or Australia. Why? Because these two countries have universal healthcare policies and they both allow their MSologists to manage MS how they see fit. This is why both Sweden and Australia have about 70% of their patients on high efficacy DMTs. There are also no Swedish or Australian DMT police standing over their consultants saying you can only use drug X or refer this patient for HSCT if they fulfil these criteria. Yes, the Swedish and Australian healthcare systems trust their consultants to get on with the job they have been trained to do, i.e. to treat MS with very little central interference.
Some conservative neurologists argue that both Sweden and Australia are over-treating MS and by doing so they are exposing people who will eventually turn out to have benign MS to unnecessary risks associated with high-efficacy DMTs. Please remember that only a small minority of people with MS turn out to have benign MS. Therefore the non-Swedish-Australian or conservative approach to treating MS puts the majority of pwMS at risk of under-treating their disease to protect the minority. This could be referred to as the anti-vaxxer approach to treating MS; let’s not treat MS aggressively so that we harm nobody.
In comparison, the Swedes and Australians will be exposing a small proportion of their benign MS patients to unnecessary risks to offer the majority the protection their brains need from under-treated MS. This is like the public health approach to vaccines; let’s treat MS aggressively to improve the outcome of the majority and by doing this we are prepared to accept some collateral damage in terms of adverse events.
Another argument that is often used against the active-treatment approach of the Swedes and Australians is that if everyone ends up on high efficacy therapy what do you do next? I counter this argument by saying these patients are probably on high-efficacy treatment because they need to be on high-efficacy treatment.
The other issue that needs discussion is the variation within countries and even within MS centres. When I first saw the DMT prescribing data from Blueteq, the NHS high-cost drug database, I was appalled. There is such wide variation between UK centres in terms of DMT prescribing behaviour that even NHS England are concerned. It can’t be right that some MS centres have 80% of their patients on high-efficacy DMTs and other centres have less than 20% of their patients on these treatments.
Some UK centres don’t prescribe some classes of DMT. In fact, the latter may be illegal. There is in fact an act of parliament stating that NHS centres have to offer NICE approved therapies. Therefore refusing to offer and treat someone who is eligible for say alemtuzumab could be legally challenged. As a result of this variation, we started the Raising-the-Bar initiative to address variation in MS service provision across the UK. A national audit is the keystone of this initiative and all MS centres will be able to see how they are performing relative to the national average and other regional centres. Hopefully, this national audit data will act as the catalyst to stop the scourge of undertreated MS in the UK.
The audit data will be so granular that it has the potential to expose outliers at the individual consultant level. For example, if one consultant has no patients treated with alemtuzumab, cladribine or HSCT and his/her colleagues in the same centre has substantial patients on these treatments it may trigger a review of that consultant’s fitness to practice as an MSologist. I am sure many neurologists will be appalled by this suggestion, but this type of individual performance review is widely used in surgical specialities and will arrive in neurology soon. In fact, it already has in some countries. If you are an epilepsy expert and are not referring a certain proportion of your patients for epilepsy surgery every year then you will have your fitness to practice as an epilepsy expert questioned. Epileptologists have agreed that a small number of patients with drug-resistant epilepsy will benefit from surgery and if one of their colleagues is not identifying and referring these patients for surgery then they are not practising according to international standards.
My dream is that every MS centre in the UK will not only have access to their audit data for quality and performance review but patients will be able to access this data on a publically available website so that that can ascertain how conservative or active their MS centre is at treating MS. My vision is to have an MS-Advisor app modelled on TripAdvisor that will allow patients to review and provide feedback on their MS service. There is nothing like a bad review to change behaviour.
So if you have MS and think your disease is being under-treated you should ask your HCP for their audit figures, i.e. how many of their patients are on DMTs, how many are on high efficacy DMTs and how do their figures compare to their colleagues and to the national average. If they are not prepared to provide you with this data you can always put in a freedom of information request.
Yes, the Raising-the-Bar national audit is going to make it hard for participating centres to not participate in the audit and to ignore their own audit data. The objectives of the RtB initiative is to raise the standard of MS services for pwMS, to reduce the under-treatment of MS and to ultimately improve MS outcomes and the quality of life of our NHS patients.
So when I ask has your neurologist flipped; I mean has your neurologist adopted a more active approach to treating MS. Are they flipping the pyramid?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.