Securing the future of MS nursing requires succession planning, community building and data collection, said Karen Vernon.

The MS nurse consultant, who took the Outstanding MS Nurse category at 2019’s QuDoS recognition event, believes forward planning is the only way to ensure people with MS continue to receive the care they need in the years to come.

“A lot of nurses are of a certain age, my age, and will retire in the next six years or so, and we stand to lose such a huge amount of experience and expertise,” she told the QuDoS team.

“One of the things we need to think about is different team structures – structures that allow us to train up the younger generation so they can take our place.”

A large part of that is about ensuring career progression by taking on nurses at different grades and giving them room to move up the ranks should they wish, she said.

“That’s not just about understanding the drugs, because I think that side of things is already covered, but making sure people have the skills they need to deliver holistic care.

“My concern is that we will lose a lot of the body of expertise that we need to deal with the complexity of advanced disease. We are losing people who have so much experience in symptom management and that’s not necessarily being replaced.

“I know the enthusiasm is there because I teach on the MS Trust’s induction module and it’s always popular. There is a willingness to learn but we need to embed that into our succession planning.”

Supported learning

Training, in itself, is not enough to ensure a ready supply of MS specialists for years to come, however. Making people feel supported in their roles is an “absolute must”, Karen said.

“The MS Trust do a lot of work in this area, starting at the induction module and carrying that through with mentoring and support for the nurses they put in place. The UKMSSNA also has a role to play and it is something they are continuing to develop.

“But it’s also something we have to do in our own roles. We have to be approachable and be ready to offer advice when it’s needed. If people feel isolated, they will not stay because it is a hard job.”

Data collection can also play dividends by ensuring teams have access to the resources they need to support their caseload.

Karen’s team was, for example, successful in its bid for the MS Trust’s Advanced MS Champion (AMSC) Programme, thanks to its comprehensive collection of facts and figures.

The AMSC programme was designed to respond to an inequity of services between people on disease modifying drugs (DMDs) and those living with advanced disease.

The champions, who are 90 per cent funded by the charity for their first 15 months in post, work exclusively with people with complex needs, visiting them in their homes and linking with other services to co-ordinate care.

“Building the database was hard work, but it gave us a solid idea of what we were and what we weren’t doing.

“We could see that as the number of DMDs were increasing, the amount of holistic care we were able to provide was reducing,” said Karen, whose Salford Royal Hospital team covers the whole of Greater Manchester as well as having more than 400 out-of-area patients.

“When we put ourselves forward for the AMSC, we had the data to say ‘look, we are not doing this particularly well and we need to redress that balance’.”

The same argument applies to trust-based business cases, she went on, because without evidence of the size and complexity of a caseload, it’s hard to make the case for additional resources.

“The nurses invested a lot of their time in getting that data, but we went from only having a rough idea of our patients to having a detailed database that includes everyone, and that has grown and grown,” said Karen, explaining that the team now even document information on lifestyle factors such as smoking status.

“It’s about having all that information so we can look at things like healthcare utilisation and prevention. Because it’s not just about drugs, it’s about the person in front of you.”

Tens across the board

By providing a means to share best practice and a support forum for MS HCPs, QuDoS feeds into many of the solutions Karen, who sits on the programme’s judging panel, advocates. Her own recognition, however, was something of a shock on the night.

“It was really nice to be recognised, but my role is totally different from what the vast majority of MS nurses do – they do the hard work,” she said.

“I never cease to come away from judging day totally amazed by the fantastic work that’s going on out there every day. There are so many people who just have their heads down and get on with it – we need to celebrate all of them.”