by Dr Peter Fletcher
As 2016 ends it is time to reflect on events from across the year – no not those events (although mentions below). I am thinking about the Parkinson’s MasterClasses we have hosted this year. Quite obviously we strive to improve year on year and evaluations of what has gone before plus needs analyses hopefully keep us fresh and relevant.
Our advanced Parkinson’s MasterClass (MC29A) ran on 7 to 9 June with the final module on 22 November (all at Halifax Hall, Sheffield) when the participants’ projects were presented. Since we stopped using the national audit tool as the basis for all projects, even though we as the British Geriatrics Society Movement Disorders Section (BGS MDS) invented it, the breadth and to my eye the utility of the projects have grown enormously and on a broad front. The projects of the winner (from New Zealand) and the three runners up are published in this 2016 edition of Moving On. Indeed the projects page has had a facelift and as a result of Sarah’s hard work you can see how our participants’ past projects fit into the various topics we have covered.
The Foundation MasterClass (MC30F) ran on 7 and 8 September (Halifax Hall again). The needs analyses were illuminating as ever. The MC30F participants were keen to learn more of the person with Parkinsons (PwP) who presents with something else and who might therefore encounter the nightmare that is an in-patient stay. There will be more on this in the next Foundation MasterClasses led by BGS MDS Chair Richard Genever. Meanwhile the realities of real world practice and possibly overlapping slightly has prompted us to introduce a session on ethical dilemmas, sadly not confined to the in-patient setting, led by Robin Fackrell.
In terms of speakers we continue to grow the Faculty, watching presentations during Module 2 of the Advanced MasterClass with interest in more than just the topic area! Although already a member of the Faculty, Louise Ebenezer very successfully became our second Parkinson’s disease nurse specialist speaker in September. More speakers from a wide background will reflect our day jobs and is something we will continue to develop.
This is even more important in 2017 as we return to running three MCs; two Foundation and one Advanced. The balance between the two is not immediately obvious and possibly counter-intuitive. The logic is that in reality one does not need that many leaders of services. More important is that big or small, together, those services serve the whole UK. Since the inception of the Parkinson’s MasterClass in 2002 it has been our observation that there is marked inequality across the UK. Thus this aspiration remains a challenge and a major driver underpinning the Excellence Network project led by Parkinson’s UK. So most urgent is that PwP get to a specialist service in the first place and that requires up-skilling and increased awareness among those who are not of themselves specialists so that they can refer appropriately. Moreover changes in postgraduate education have diminished the time in training for geriatric medicine let alone its subspecialties. This will get worse. I heard at the BGS Education and Training Committee (07/12/16) that following what appeared to have been a pause; Shape of Training implementation is to go ahead as planned. It is complicated but in essence it delays the opportunity to start ST training by a year (so core training is three rather than two years) and once started it lasts only four rather than five years. The popularity of the Foundation Parkinson’s MasterClass looks set to grow.
National Institute for Health and Care Excellence (NICE)
Away from the MasterClass itself the wheels of NICE continue to turn methodically. Many will have read the draft guidelines that were out to consultation from 4 October to 15 November 2016. Richard Genever as BGS MDS Chair has responded as has Sarah on behalf of the Neurology Academy. Basically anything that is unequivocally a ‘no’ needed challenging in particular with regard to medication. There seems to be uncertainty over whether NICE meant to dismiss amantadine but they do seem to be on a misguided mission to ‘unfriend’ Duodopa. Better news is that despite a dearth of evidence midodrine is placed before fludrocortisone for orthostatic hypotension arguably reflecting pragmatic practice. The full-unexpurgated version is due out in April 2017.
In the last 12 months two new drugs have been licensed for UK use, which is excellent news. Representatives on stands were available to discuss the first new Parkinson’s drugs for 10 years at the Glasgow BGS (November 2016) lending an almost nostalgic air to events.
Opicapone [Bial]1,2 is a catechol-O-methyltransferase (COMT) inhibitor and its properties were discussed at a sponsored symposium at the Glasgow BGS. It is non-inferior to entacapone and has the advantage of requiring once per day dosing only. Unfortunately there are no head to head data with tolcapone, anecdotally still the ‘big daddy’ of COMT inhibitors.
Safinamide [Profile Pharma/Zambon] seems to have been coming for years but has finally arrived and is available (national meeting 01/12/16 followed regional meetings around the country). It is a new chemical entity with a unique mode of action. This includes selective and reversible MAO-B-inhibition and blocking of voltage dependent sodium channels that leads to modulation of abnormal glutamate release. Thus its unique selling point is that despite enhancing dopaminergic action it is not at the expense of dyskinesia.
Both drugs have black triangles and phase 4 data are awaited.
4th World Parkinson Congress (WPC)
It was a pleasure to be a Program Committee Co-Chair at the 4th World Parkinson Congress (WPC) in Portland, Oregon in September (7 weeks before ‘you know what’). In the incredibly civilised Pacific North West very few people wanted to speak about what might happen on 8 November 8 other than to joke (?) that their cars were fully fuelled and pointing towards Canada, thus prompting jokes (?) from Canadian colleagues about building a wall … Happy days.
The WPC is an awesome event lead by Executive Director Eli Pollard in New York City. She is truly a remarkable individual bringing together 4,546 participants from 67 countries made up of clinicians of all stripes, scientists and PwP/carers (next meeting 2 to 7 June Kyoto Japan 2019). As well as the blindingly obvious regarding clinicians, what was interesting is how much the scientists and the PwP/carers valued their interaction with each other; there is no other setting where this would happen.
It was a pleasure to meet and work with so many colleagues many of whom I have only known by reputation. I will specifically mention Jon Palferman and his superb book BRAIN STORMS (Penguin 2015). It is beautifully written (he is a journalist) so very readable, yet covers very complex concepts. I have been pointing PwP and their families towards it as a stocking filler! (PS: Tom Isaacs’ Shake Well Before Use is still in print and is also an excellent read – see Cure Parkinson’s Trust’s [CPT] website).
Space does not permit me to go into great detail but if you would like to see the breadth of the WPC’s content the programme is still online. The one plenary I must mention is the one entitled Stem Cells and IPS (Induced Pluripotent Stem) Cells: where are we? [p50] This was timely because it followed a major news story concerning the injection of stem cells in to a patient’s brain in Melbourne3,4 – the latter reference particularly graphic but it is the Daily Mail. The issue is that it is not entirely clear where that initiative came from. Listening to US colleagues Patrick Lund and Steve Finkbeiner and particularly Swedish colleague Malin Parmar and our own Roger Barker (Cambridge) the pan-national stem cell programme is certainly proceeding slower than speaker CPT’s Tom Isaacs would like. It is though progressing methodically and on the basis of sound robust science with patient safety at the heart of all that is done. Clearly any damage or worse to a PwP anywhere would have consequences for this research everywhere. For those interested in stem cells in Parkinson’s the names above are the ones to search on and this is a regular topic for examination in the Movement Disorders Journal. The one potential fly in the ointment is that this Northern Hemisphere collaboration is currently funded by the TRANSEURO [PD research] group; inevitably there are worries about future funding when we leave the European Union.
PwP doing it for themselves
One of the joys of speaking at patients’ group meetings – something I would urge all proto Parkinson’s specialists to do – is finding out what PwP try out for themselves. Physiotherapy and other ‘conventional’ therapies of course but also complimentary therapies ranging from the widely accepted to some that many would consider bonkers. That said, never forget the therapeutic effect of the consultation; much has been written on this particularly in primary care and complimentary practitioners do give PwP time (and yes I know the meter is running) while the time pressures on the NHS are arguably diminishing this valuable commodity and outcome.
So – PwP are doing it for themselves! I have PwP who have moved from strength and balance training to those combining rhythm and movement that include running, swimming, skiing (honestly) and cycling but also boxing and dancing.
This was reflected in the WPC video competition in which all those exercises were reflected. Out of 75 submissions we selected the top 12 – an extremely tough process. From these videos the Grand Prize winner was chosen and announced at the Opening Ceremony. It’s inspirational and worth watching![youtube https://www.youtube.com/watch?v=ak4smTliKUg?rel=0]
What’s happening elsewhere in the Neurology Academy?
Finally the established Parkinson’s MasterClasses (2017 will be year 16!) are not the only show in town or indeed on the road. Sarah et al, now operating as the Neurology Academy have also run four Roadshows on non-oral Parkinson’s therapies, as you would expect with multiple sponsors. These were all chaired by [Parkinson’s] Excellence leads and held in Newcastle, Manchester and Glasgow in October and Birmingham in November.
Hugely exciting for the Neurology Academy has been developing the MasterClasses in other disease areas. Each Academy within the Neurology Academy has it’s own website accessed from the neurologyacademy.org. I suspect there is much more to come!
Close to my heart has been the Dementia Academy with meetings for primary care in March and secondary care in June, both in Manchester. A further MasterClass for both groups was held in London in September. I honestly thought that our first international foray would be with the Parkinson’s MasterClass but in fact it will be a Dementia MasterClass led Ira Leroi, Ross Dunne and Ross Overshott in Sharjah in February 2017.
A fabulous development this year has been the first Multiple Sclerosis Academy MasterClass held at the Kenwood Hall Hotel, Sheffield in September. Why so interesting? First the Faculty’s educational approach has been modelled on the Parkinson’s MasterClass complete with needs analysis informing the MS Academy Faculty of participants’ needs and wants (content validity in research parlance). Second we get a glimpse of how practice can/should change once disease modifying therapies (DMT) (for relapsing MS and some therapies more so than others to my eye) become a reality. While the priority in the Parkinson’s MasterClass has been to get PwP to a Parkinson’s specialist as soon as possible (NICE guidelines) there is added urgency and a substantial step change in practice if that is with a view to using a DMT. How would we cope in Parkinson’s? If and when the time comes we may have much to learn from MS.
The third sector organisations such as Parkinson’s UK and Cure Parkinson’s Trust (clue’s in the name) rightly push the idea of a cure but disease modification [of process/mechanisms] would be a useful first step. It is a generalisation I know but despite the Quality Outcome Framework in primary care consider how little the incidence of vascular disease and many cancers has diminished. Compare and contrast though with much more substantial reductions in mortality through disease modification although I accept rising prevalence and often morbidity. Pending a cure it wouldn’t take a lot of disease modification in a condition as long term as Parkinson’s to make a huge difference to PwP and a much happier New Year all round.
Best wishes for 2017.
- https://www.bial.com/en/pressroom.138/news.140/opicapone_significantly_improves_off-time.a494.html (Accessed 10 December 2016)
- http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(15)00336-1/abstract (Accessed 10 December 2016)
- http://www.abc.net.au/news/2016-09-14/parkinson’s-disease-trial-injects-stem-cells-into-brain/7844674 (Accessed 10 December 2016)
- http://www.dailymail.co.uk/news/article-3788343/World-stem-cell-trial-treat-Parkinson-s-disease-starts-Royal-Melbourne-Hospital.html (Accessed 10 December 2016)