M4RD's reflection on priority area two of the UK Rare disease framework

Medics 4 Rare Diseases is particularly invested in actions addressing Priority 2 ‘increasing awareness amongst healthcare professionals’ . M4RD is a registered charity that is striving to drive attitude change towards rare diseases amongst medical professionals. It does this by providing education and practical tools for medical professionals and medical students about rare disease in order to reduce the diagnostic odyssey and improve the patient experience.

M4RD’s CEO, Dr Lucy McKay, is part of The UK Rare Diseases Forum which helps advise the UK Rare Disease Implementation Board. It has also been a steep learning curve, as we have learned the ways that different stakeholders work together in this area. The charity focuses its education on the relevance of rare disease to everyday clinical medicine, equipping doctors to manage their patients with rare conditions more effectively and sensitively. The M4RD team were really encouraged by the identification of healthcare professional awareness as a key Priority for action by the DoHSC. Over the last year it has been an exciting time working with the different nations, to different extents, on forming their Action Plans.

Below is an outline of M4RD's work in this area, written by Emma Huskinson, communications lead for M4RD:

Reflecting on what we know so far, about plans addressing Priority 2, Actions outlined are nation-specific; while there is a great wish to share and learn from each other, we don’t seem to have found the right environment in which to do this. M4RD is one potential facilitator of this but we are acutely aware that our understanding is founded in lived-experience of the medical profession and we can’t speak for all healthcare professionals. Naturally, there are overlaps between needs of different professions but it is important that Actions are carefully designed and targeted in order to have the greatest impact.

The collaborative work between M4RD and the Welsh Rare Disease Implementation Group is a great example of how we can combine to create specific, targeted and measurable actions. We are working with Dr Duncan Cole at The University of Cardiff to learn from their all-rare disease approach to medical education and to run a survey of medical students across the UK to, evaluate their current understanding and learning needs, in regards to rare disease. We are also working with Welsh RDIG and Health Education and Improvement Wales (HEIW) to produce two ‘Reframing Rare Disease’ events for GPs next year. This work was put into motion when Dr Graham Shortland came to M4RD and openly asked us for a “wish list” . This led to the creation of M4RD’s suggested Action Plan for Priority 2. We have also been glad to engage with Scotland’s Rare Disease Policy Team, Northern Ireland’ NIRDP and England’s Genomics Education Programme. However we can’t emphasise enough the need for an all-nations approach to this Priority in particular.

In terms of ‘healthcare professional awareness’ it is key to remember that the healthcare workforce is mobile across the whole of the UK. A healthcare professional may have received their undergraduate education in one country, further training in another and be working in a third. This Movement of the healthcare workforce between the different nations of the UK is common and therefore it is essential and would be more efficient to have a national strategy for Priority 2 which is then complimented by specific Actions for individual nations that are tailored to population needs and local NHS Services.

Going forward M4RD is committed to helping facilitate collaboration between stakeholders in all four nations and in different healthcare professions to start working on a national approach to Priority 2. The model for this may lie in one of the new Independent Advisory Groups (IAGs) that has spun off from The UK Rare Diseases Forum. Watch this space!