November 2018 saw first in a series of events set to tackle MS service variation in the NHS. The event highlighted a number of challenges to improving health and social care, to deliver more equitable and optimised MS services in the UK.
A poll, posed at the opening of the event, set the tone thereafter, when 85% either agreed or strongly agreed that ‘Those of us in the room have the power we need to fundamentally improve the quality of MS care in the UK, reduce variation and offer consistent care at the level we want everywhere, in the next 3 years’.
This July, the follow up event inspired, then galvanised activity amongst its delegates, all of whom attended two of five practical workstream groups, and left the two-day conference with actionable ‘to-do’ lists (fig 1) which fitted into an overarching three-year plan (table 1).
The workstream sessions were practical workshops where delegates were equipped with tools and information to effect change through embracing data, audit, patients as partners, social determinants, and wellness and lifestyle, to effect change (fig 1 – tbc). Alongside these, interactive presentations encouraged clinicians to think in new ways, and to work in new ways. Sue Thomas and Martin Fischer gave a fresh perspective as they asked whether we can improve access to MS services, reminding the conference that improving services is not a destination to reach but a continual cycle of imagining, planning, designing and building. Jerry Clough encouraged the room to see challenges as difficulties to overcome together rather than as unsolvable problem to abandon, and to locate their ‘why’, so that they could work with purpose.
After the first event it was clear that some ‘enablers’ were needed to give this programme of work traction. Leadership, and sharing of best practice were two of those identified. In response, Professor Gabriele de Luca and Barbara Hoese examined what it means to ‘lead for change’ and announced the MS Academy’s new leadership programme to enable clinical leaders to do just this. Meanwhile, around the conference, posters – all now available online – were sectioned into the workstream themes and provided an opportunity to showcase innovative ways that teams across the country have already begun ‘raising the bar’ in their local service.
In order to give some structure and unity to this national programme, an ambitious timeframe has been drawn up, and was presented to all at the conference (table 1). Whilst it may appear daunting at first glance, all of the individual workstreams feed in and interlink within the plan.
With clinical leaders emerging to spearhead change, and every healthcare professional embracing the workstream that they are passionate about, whilst sharing their practical learning and supporting their peers, it is achievable.
| Key aim | Information | Outputs |
| Year 1: by 31st July 2020 | ||
| Quality audit rollout | All centres actively engage in a national quality audit (see audit workstream) adopt the vision of 4+4 and aspire to meet the associated timeframes, Further information and guidelines: NHSE algorithm, International Brain Health standards: an optimal target to aim for | Set the 4+4 ambition, test it and get adopted as a target across the community (at least 20 centres) Socialise with key policymakers, support/interest groups, industry and healthcare leaders Create a business case with the costs and benefits of achieving the 4+4 vision and how it will reduce variation. |
| Year 2: by 31st July 2021 | ||
| Patient partner programme rollout | All centres have tested a nationally-developed patient partner programme to upskill pwMS on navigating local services, self-monitoring and self-managing (see patients as partners workstream). Alternatively, this programme will offer opportunities for pwMS to make local connections, being developed in partnership with patient organisations and dependant on local professionals to engage disempowered patients soon after diagnosis and enable pwMS to lead the programme’s delivery. | Determine how to collect data to meet the ambition Articulate the KPIs and reporting methodology Get policy makers to adopt the KPIs within a national framework (NHSE) Seek funding support and NHSE backing Centres to produce plans to remodel services to achieve the vision |
| Year 3: by 31st July 2022 | ||
| Holistic management of MS and ‘no patient left behind’ ethos | All centres are working differently and managing MS holistically, adopting the ‘no patient left behind’ ethos, and including programmes to screen and manage comorbidities and promote lifestyle interventions (see wellness and lifestyle workstream). Centres collect data on these new activities (audit & data workstreams). Centres have systems in place to make sure that all people with MS covered by a particular service have access to that service (see social determinants workstream). | Rollout the use of the KPI to all centres with national reporting Centres change services with a determined ambition to achieve standards across the UK by the end of year 3 |
| Leadership Sharing Practice | The leadership programme will be small and selective, focus on ‘doing’, with the programme involving participation and completion of a national project. Centres commit to share their successes and failures so that others can learn from them, and to share their materials and experiences with other centres, creating peer support and raising the bar for everyone. | Leadership education programme, delivered by Pr Gabriele de Luca and facilitated by the MS Academy. The MS Academy will support and enable this sharing through online platforms and its existing infrastructure and educational courses. |
The take home message last year was ‘we need to do things differently.’ This year, that message was deepened into ‘we need to think differently, work differently, and deliver services differently.’ The encouragement to find our ‘why’ as a community of people committing to improving the lives of those with MS was throughout the event. That community must feature those living with MS as equal partners in this journey to raise the bar across MS services – in review, design and delivery. CEO of Altogether Better Alyson McGregor summed up well, saying ‘we need to agree a new purpose – for clinicians only to decide won’t cut it, we need to work together, in real collaboration.
