The Parkinson’s Academy 2018; building on success – recent, current and future collaborations
Welcome to the 2018 edition of Moving On, the in-house on-line newsletter of our Parkinson’s Academy. Uncertainly reigns as the year draws to an end. Since this time last year we have had a new secretary of State for Health, for the Geriatricians and Neurologists among you a new (London) Royal College of Physicians President and specifically for geriatricians a new President of the British Geriatrics Society. So that’s alright then.Well not really, our national politics are inescapable. Colleagues shared with MC34.2A concerns and questions from patients as to whether they will still be able to get their medication after March 29th 2019. Meanwhile at the annual Parkinson’s Disease Nurse Specialist Conference last month colleagues reported patients breaking their tablets into quarters to try and get by with less so that they could stockpile medication. The Health Select Committee Chair – herself a doctor – has been doing a magnificent job trying to keep the NHS and our patients at the forefront of debate but sadly the parliamentary focus remains elsewhere. The 2019 Moving On will be interesting – reframe our title as you see fit but was there ever a more symbolic instruction/observation/wish as we topple into 2019?Our Advanced and Foundation MasterClasses ran as smoothly and as efficiently as ever thanks to Sarah and her team. We welcomed 38 rather than the usual 25 to MC35F, a substantial increase. We knew the different room format could work as we use the same layout for the MS MasterClasses but 38? In fact it went swimmingly well with plenty of participation and a layout that really helped speakers ‘get out there’ among the participants (no tables in the way). Of 29 evaluations just one fell below 92% – gutted! The free text was universally positive but the variation in what respondents chose to comment on did make me question whether we were all at the same MC! But then again different eyes from different angles is the essence of our multi-disciplinary day jobs. Suffice it to say that the universal messages from our wonderful participants were around just how welcoming, friendly and enthusiastic everyone was. So a huge thank-you to everyone involved in delivering such a fabulous programme.Readers would recognise the format of MC34A for while the style of delivery has evolved since 2002 the basic design remains similar. As with the Foundation MC the Advanced MC curriculum has also evolved as the needs of the 2 different groups attending have diverged. The latter is pitched at a higher level and with more content delivered quicker. The key difference though is the project work done between modules during the Advanced MC. The NHS evolution of audit into medical audit to clinical audit through to Quality Improvement Projects has chimed well with the way our projects have evolved over 16 years.We have had some fantastic titles and some frankly jaw-dropping pieces of work that have come back to the second module of the Advanced MC (see below). If there is a frustration it is regarding what happens next. We know that educationally the transition from the MC to what is out there in CPD-land if pretty seamless. That is not so true for project work (or indeed research initiatives). My aim is to more closely align what is done and how it is done with fora where the work can be shown perhaps in poster form to invite comment, critique and constructive suggestions. The obvious meetings are at the Parkinson’s Excellence Network and the BritModis biennial meeting. We are working with colleagues in the BGSMDS and Parkinson’s UK to move things on in 2019. Moreover with such a framework, how we might start to deliver research initiatives can be seen!Our collaboration with Bial on July 4th in Birmingham was a new departure. Cutting Edge Science for Parkinson’s Clinicians did what it said on the tin. It is a neat title I came up with not just for the Pd Academy but for use in our other Neurology Academies too (so don’t be surprised if you see it above other Neurology Academies’ meetings). Our thanks to Bial for giving us free reign to put the programme together. I wanted a critical angle on received wisdom and our world-class speakers gave us just that. Indeed the evaluations were exceptional so what next? Well, the brilliant news is that we have agreement that the 2nd Cutting Edge Science for Parkinson’s Clinicians will again be in Birmingham. Pop June 25th (late afternoon/evening/dinner/overnight) and 26th June (all day) 2019 in your diary with details to follow. Just to tempt you, agreed titles include; Prodromal Pd – fact or fiction, What are the relationships between ageing, frailty and Pd and How can we target the disease mechanisms in Pd?→ Register hereThe second module of the Advanced MC usually heralds the end of the Parkinson’s Academy’s year. However this year for the first time we hosted a Research Engagement day commissioned and planned by The Cure Parkinson’s Trust (CPT). Across the day the programme moved from the many molecules identified by CPT through their Linked Clinical Trials initiative through hearing from clinician researchers about the trials (both senses!) and tribulations of conducting research to the experience, needs and expectations of those with Parkinson’s disease. The final session from Parkinson’s UK pointed us to where we and our patients might find information in one’s locality regarding current trials – do take a look. There will be more details of our discussions on the day in written and audio-visual format on our website and the CPT website. We have set a hare running as increasingly we really do have the service framework in which research projects can be delivered. Yes there are huge time issues but these are exciting times nonetheless.Meanwhile what is being discussed in the Pd family? The gut and the immune system have been implicated in the aetiology of Pd for years but the appendix? Who knew it was a parking lot for abnormally folded proteins (Science Translational Medicine 31.10.18 v10). I suppose the appendix had to do something or else it would have devolved and disappeared altogether – or not – discuss!Other topics are available and finally returning to research I predict that patient and public involvement will increasingly drive our research and not just because of patient-funded 3rd sector organisations such as Cure Parkinson’s Trust and Parkinson’s UK. We know [in general but cancer specifically] that patient outcomes are better when managed in a service which has an ethos of enquiry. The question then is around enrolment. Have a look at Impact of patient and public involvement on enrolment and retention in clinical trials (Br Med J 2018: 01/12/18 p356) – more patient and/or lay involvement in any form leads to better enrolment. In clinic our patients will be asking the what where and how research questions.Are we ready?Have a peaceful Christmas and a very happy New Year.
'The things you can't get from the books'
Parkinson's Academy, our original and longest running Academy, houses 17 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.