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Invaluable support

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Jon and Allison

The MS Trust and University Hospitals of Leicester NHS Trust are working together to make a difference for local people living with MS with the recruitment of the first new nurse placements in the MS Trust’s Specialist Nurse Funding Programme. We went to Leicester to speak to Allison, one of the existing MS nurses, and Jon, who has been living with MS for almost ten years, about the difference the new nurses will make.

Allison the MS nurse’s story

I’m the MS specialist nurse in Leicester, I’ve been here for 14 years now. We have 1,600 people with MS who are known to us in Leicestershire. There are currently two of us MS nurses here, one of whom is part-time, and there are  just too many people to help.

We deliver a really good service on our helpline. When we did the MS Trust’s GEMSS service evaluation we found that we had a response rate of 98%, which is really good. There are people you can’t always get back to – you have to leave a message. But we’re nearly 100%.

But we’d really like to see people more in the community. Our home visit rate has dropped over the years, partly because of the new disease modifying drugs coming in. These are a really important for people with relapsing remitting MS. It’s vitally important that we support and monitor them. But it means that people with more progressive MS have lost out because we haven’t been able to cover them so well. Our time isn’t infinite unfortunately.

We’ve been really lucky to be chosen by the MS Trust to receive new nurses. Not only are they part funding nurses, they’ve helped us put together the business case for them, which has been completely invaluable.

We’re hoping the new nurses will help us see more people in the community, actually set up community clinics, which is something which would transform our service.

"I can’t thank the MS Trust, and all the people who support the MS Trust, enough. It’s so important – it means that MS nurses have got the best knowledge possible and can always be there for people living with MS"

We have lots of people on the outskirts of the county who can’t come to the central hub in Leicester for clinic appointments. It’s too far, there isn’t easy transport. With the new nurses we will be able to set up clinics in Loughborough, in Hinckley,  in Coalville. This has worked really well in the two clinics we’ve set up elsewhere.

The MS Trust has been completely supportive of me, right from the very early days. I became an MS nurse in August 2002. Like all MS nurses I went on the MS Trust foundation course and it was just brilliant. It was so important. You get a week’s worth of training on that course, but it feels like a year’s worth of information consolidated into a week.

The information you get from the MS Trust is also fantastic. They have excellent books we use on a daily basis and give to people with MS. The annual MS Trust conference is great too – I’d love to go every year, but we have to do all our training in our own time and I can’t always do it.

Being involved in the MS Trust’s GEMSS project helped us evaluate our service and was so important for us. It was fantastic how it highlighted how we were working hard and seeing a high number of people. We were very productive even though we were spread thinly and it made it obvious to the hospital that extra nurses were really important. We wouldn’t be getting them without it. 

The MS Trust has supported us every step of the way and now with the nurse funding programme they have given us an extra push. The hospital was impressed that a national charity like the MS Trust was getting involved and I think that makes a big difference. The process was brilliant. I would thoroughly recommend that other MS teams apply to the fund.

I can’t thank the MS Trust, and all the people who support the MS Trust, enough. It’s so important – it means that MS nurses have got the best knowledge possible and can always be there for people living with MS.

Jon’s story

I’m 43 and I’ve been diagnosed with MS for going on 10 years. I’ve been in a wheelchair for two and half years. I no longer work. I’ve gone into secondary progressive MS, but at the moment I’m pretty stable and happy. Which is really good.

The first symptoms where I thought something might be wrong were about 12, 13 years ago, I lost feeling all the way down my left side. They classed it as a one-off thing, but we did discuss the possiblity of MS. After a second episode of numbness a while later they diagnosed it as MS. I was really relieved, which some people found strange.

I was in hospital for a week, they did an in-depth investigation with an MRI scan. That was when I first met my MS nurse. I was scared stiff of meeting them because I didn’t know what it was all about. But they turned out to be really, really good.

"I don’t know where I’d be without an MS nurse to be honest. I’d be less happy with how I am, definitely. I don’t know if I would have accepted it as well"

They went through the emotional side of it with me. Because I didn’t really know anything about MS, so they sat me down and said, “this is what could possibly happen”. Unfortunately a lot of it has happened. But they’ve been there with me when things have happened. They’ve been with me every single step. And they’re still here.

You ring them up, they may not be able to get back to you that day. But it will be within three days. Some times you get the phone call in the evening. They’re still working for us. You tell them what’s going on and they talk you through it.

I see them officially once a year, but unofficially once every six months, or whenever I need to see them. Once one of the nurses actually came and knocked at my door because she did a clinic round the corner from where I live. She wanted to see how I was. I thought that was quite nice! She came and had a cup of tea and asked me how everything was going. They’ve always been there. Even when you don’t need them, it’s good to know they are always there.

They’ve offered emotional support. I needed that. From being a hardworking dad of two and enjoying life to someone with secondary progressive MS, I definitely needed that. They talked me through the medical side of it, the different treatments I’ve tried. They’ve done everything to help prepare me for what MS might be like for me. If I have any questions or worries, they find things out for me. They’ve always come up trumps. I quite like MS nurses, you might have noticed!

They’ve offered to help my family, but my children are a bit shy. They prefer to hear from me. But the nurses showed me a way of talking to the kids when they were little. They’ve now grown up with it. I wouldn’t have been able to do that without the support of the nurses.

If I hadn’t had a nurse? My point of contact would have been a GP. And GPs only go so far, you know. So I think I would probably end up in A&E. With a doctor who’s very busy. And what he says often goes over your head, and you don’t have any time to understand anything. The questions come afterwards, when you’ve had time to process things.

That’s when the nurses are there for you – when you have questions or a problem to do with MS. And not everything in life is to do with MS of course. I ring them up and say can we meet or whatever, and it was always yes. They do an outpatients clinic where I live so I don’t have to come to Leicester. It’s always within a couple of weeks. Which is great. If I’ve been hospitalised they’ve always come within a day to find out what’s going on.

I don’t know where I’d be without an MS nurse to be honest. I’d be less happy with how I am, definitely. I don’t know if I would have accepted it as well. Definitely not. They’ve been great for finding out the questions that do come as things progress, if things progress. GPs or doctors don’t have the time or the answers.

From working myself - I used to be in charge of 50 people - I don’t see how one and a bit nurses can be responsible for1,600 people with MS. They need more support definitely.

New nurses will make a huge difference for the patients. And for the existing nurses.

As I understand it, The MS Trust doesn’t get funding from government or the NHS. So these new nurses have been funded by ordinary people running marathons, doing bake sales, raising money in any way they can. I’d like to say thank you very much to all of you. It will make such a difference. You could go through MS alone. Or you could go through it with someone on the end of the phone who you can rely on. I would always take the second option. For people to be funding this to help people like me is amazing.

Support the MS Trust's Nurse Funding Programme.