The 360 View: MS Service Mapping Project is a major endeavour to map MS services around the UK. This project will help us understand the challenges facing the NHS and people living with MS and show us where we can work most effectively to meet that need.
The MS landscape has shifted considerably in recent years. The resource challenges in the NHS, the reconstruction of services pulled apart by the Covid-19 response, and the restructuring of NHS Trusts into ICBs have brought changes to MS service delivery across the UK. We recognise that people with MS should be central to the MS services, and we want to understand what has happened to the ways MS services are delivered, and what is the impact on patient experiences.
The MS Trust has a long history of working alongside MS health professionals to support service improvement. We have undertaken significant mapping projects before, such as the 2021 MS Nurse Mapping Project which built on our previous surveys in 2018, 2016 and 2014. The data that these projects collected has been influential across the MS space, indicating for the first time what a sustainable case load might look like for MS nursing, and revealing key challenges around a lack of administrative support and the ineffective use of health professional time.
MS Forward View took this data and showed how many people with progressive or advanced MS were underserved by MS services that focused on diagnosis and DMD delivery. As a result, the MS Trust were able to advocate to 'Make MS Care Fair' and launch our Advanced MS Champions Programme, piloting this specialist role in six areas of the UK.
Our ambition is that 360 View will be a bigger and bolder project than ever.
Previous mapping projects did not include the patient perspective, focused only on MS nursing and relied on some limited data sets. Our ambitions are to:
- source reliable quantitative data from service leads on caseload size and makeup,
- include a direct patient perspective on MS services,
- survey a more inclusive selection of health professional roles including allied therapists, pharmacists and MS nurses,
- link these data sources and relate findings together holistically,
- provide opportunities for focal studies on specific ICBs or regions to aid transformation programmes.
We will be collecting data in several different ways, including online surveys, focus groups and in-person surveying.
A survey will be sent to named MS Service Leads, and followed up by telephone where needed. This survey will collect broad, anonymised quantitative data about how the service is structured. A more general survey will go to all health professionals working in MS, asking about their working lives and the services they deliver. MS staff will also collect in-person reflections from health professionals at our Annual Conference in March. All data will be anonymised and aggregated to ensure that individuals cannot be recognised.
It is vital that people with MS have the opportunity to comment on the health services that they use, whether those are categorised as MS services or not. A third survey will go out via email and social media to capture this data which will be regionally linked but anonymised. We will also conduct extensive focus groups online and in person to ensure that we reach people that are not digitally connected and people who are not already known to us as a charity.
Throughout spring, we will be bringing together regional groups to discuss the situation in detail in selected MS Service areas. This will include collecting experience as case studies to bring life to the project.
All data collected as part of our 360 View MS Service Mapping Project will be treated with care and in accordance with our privacy policy. We will not share it outside our organisation except as part of an anonymised and aggregated report. You will have the opportunity to say whether you are willing to be contacted for further involvement in this or other MS Trust projects.
As we've seen in previous mapping projects, the insights we hope to generate from 360 View have the potential to inform our work for many years.
The primary outcome will be a series of reports ranging from the big picture to regionalised studies of MS services around the UK. We will analyse the variations in service structure and delivery, and relate that to the experiences of service users.
With this insight, we will be be able to advocate effectively for service improvement where needed, and make evidence-based recommendation supporting change. The data will help us develop new information targeted to the needs of people with MS, helping them to navigate MS services and other relevant health and social care. The project will also shine a light on the training and education needs of MS health professionals, enabling us to respond and adapt to that need.
We are open to collaborative working with other stakeholders where that would align with our strategy and further our ambitions for people with MS.
If you are interested in contributing to 360 View, or have collaboration projects in mind where we could work together, please email service.mapping@mstrust.org.uk
