How does being part of a multidisciplinary team help you provide care for people with MS?
CW: At the moment we are fortunate to have a specialist physiotherapist and a specialist social worker. Having a social worker in the team is still quite rare in the UK.
SF: For us as nurses, the team has enhanced collaboration in delivering care that’s focused on the person with MS. Whoever assesses the person identifies things that need to be explored.
CW: It may be that the social worker identifies that someone has urinary problems, so they’ll contact the appropriate nurse to follow that up. I think through our collaborative effort, we help each other identify each person’s specific needs. And we each individually reassess after our original referral.
I think holistic care – seeing the person rather than the symptoms – makes a huge difference to people. I think of the newly diagnosed young mum we saw recently. She’s had to give up her work because she wanted to focus on looking after her family.
We helped her access occupational therapy to get adaptations within the home. Our physiotherapist was able to help her with some of her mobility issues. Our social worker helped her to look into benefits issues and additional support for her and the children.
I think looking at bringing all the health professionals together can make a huge difference to someone with MS. Through her first 18 months I was monitoring her DMD, and I realised she needed to switch treatment and consider escalating to a second line treatment.
There’s a lot of anxiety that goes with that, but I was able to give the support and co–ordinate the service as required. As a health professional that’s very rewarding.
What are the big challenges facing MS specialist nurses?
SF: We have about 450 people on DMD treatment – that’s a lot of people to see on a regular basis. And it’s becoming more complicated. Lemtrada, for example, is an infusion therapy. You need to monitor the person’s blood and urine every four weeks. Trying to accommodate an appointment every four weeks can be quite challenging! We need to work out how we can do this, working out our clinic capacity.
CW: Maintaining equitable access for people who aren’t taking DMDs is something we both feel quite passionately about. We need to try to address the equity within the service because clearly people who aren’t taking DMDs are just as important and often have complex needs at different stages of their journey.
How does the MS Trust help you?
SF: MS Trust resources are vital for us. We always signpost to the MS Trust and reassure people that it’s reliable, updated, independent information. The publications from the MS Trust are very clear, concise.
CW: The Development Module training you get when you first become an MS nurse is just amazing. It gives you the foundation to build upon for the rest of your career. I can’t thank them enough for that. It’s incredible.
SF: The MS Trust information team is fantastic! If you don’t know anything you can ask and they’ll find out for you.
What did you get out of taking part in the MS Trust’s GEMSS programme?
CW: We wanted the evidence to support our service – that was a big part of it. And really it has proved to be invaluable.
SF: When we were selected we were delighted. The process was really encouraging. The facilitators were fantastic. We were highly motivated. It’s made us look at the service in a completely different way. In terms of identifying what we didn’t do so well, and what we did do well is good to know. And also that we can do better.
Overall, GEMSS helped us raise the profile of the service within the hospital. And we’ve received very positive feedback. We felt we were one service among many, but we stood out for a little while.
How Shona helped me
Moira, diagnosed in 2010
I met Shona at the time of my diagnosis and she helped me through the initial shock. To begin with I didn’t want to know. You can read too much information in my opinion. But last Christmas I had a fall and my leg was very swollen and she sent me to physio and helped me deal with that and get my walking back properly. I’m really very lucky. The biggest difference she’s made for me? The acupuncture. I see her every 6–8 weeks. It stimulates the nerves in my leg and helps me walk more easily. You walk out of here feeling great! I have great admiration for her and her skills – as I do for all specialist nurses. I feel like they know me better than the consultants!