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'It used to be diagnose and adios, but now there is so much we can do'

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MS nurse

To mark 25 years of MS specialist nursing, we caught up with Gail Clayton, Vicki Matthews and Megan Roberts, three of the first MS nurses, to hear their thoughts on how MS services have changed over the last 25 years, and the challenges we still face to ensure nobody has to manage MS alone

In 1995 Gail Clayton was appointed as the first MS specialist nurse in Wales. She is now lead clinical nurse specialist at the Helen Durham Centre at the University Hospital of Wales.

There wasn’t any kind of MS service when I started. I covered half of Wales out of a car boot! There were no neurologists with a special interest in MS, so there weren’t any clinics, and patients were diagnosed and then just left to it.

The role of an MS nurse has changed beyond recognition in this time. But they are very much becoming treatment nurses now, focusing on MS drugs. This is great for the patients who are having treatment, but a real shame for those patients who aren’t, because they can sometimes get a raw deal at the moment.

I love my job. Even after 20 years it is changing all the time. There is always something new to learn, and that keeps it fresh. It’s challenging and busy, but there is such a variety of people out there that you get to meet – I wouldn’t want to do anything else!

There’s lots that I’m proud of in my career. Setting up the all-Wales MS service was a huge achievement. I was also delighted to be nominated for the MS Health Professional of the Year. I got to take my daughter along, who was 12, and I went outside to do some interviews, and I remember coming back in and seeing her help someone who had MS with their dinner and then help somebody else with their foot plate, and that was a really proud moment for me.

Vicki Matthews has over 30 years of experience caring for people with MS and set up the Wessex MS Specialist Service at Southampton.

MS care was reactive and poor when I first started. We didn’t have treatments for MS, what we had back in those days, were treatments for the complications of MS, and there was very much an attitude of ‘diagnose and adios’. But we have seen enormous changes. It’s gone from ‘You have MS and there’s nothing we can really do about it’ to a breath-taking pace of change in terms of treatments that will modify the course of MS. Our whole approach is different now; the hidden, more subtle and complex issues of MS, which when I first started were never discussed or understood, are now considered as equal importance to the most obvious side of MS.

To someone who has just been diagnosed with MS, I would say ‘Don’t be afraid; you’re not alone’. 25 years ago, MS was an incredibly lonely place for people to be and to some extent being their nurse was also a lonely place to be. Now there is much we can do to manage it and we’ll manage it together.

I’m really proud of all the people I’ve been able to support: their courage, their humour, their tenacity, their willingness to embrace new treatments and new approaches. I still see patients who I’ve known for 25 years getting on with their lives, still living in the fast lane and doing all the things they want to do, and that makes me proud.

Megan Roberts began her career as an MS specialist nurse at Salford Hospital in 1996. She now works for the MS Trust as MS Specialist Nurse Programme Manager, helping us fund and train new MS nurses

The sheer speed of change in MS care in the past 25 years has been extraordinary. The growth of disease modifying drugs (DMDs) has been a huge thing and it’s fantastic there are so many options now. DMDs have not only made a difference to people who can take them, but they have been instrumental in the development of MS services which can help everyone with MS.

The MS Trust’s nurse funding campaign wants to make sure these services are available to everyone who needs them. The Trust has been able to pinpoint the areas where existing MS nurses are working with unmanageable numbers. In an ideal world the NHS should be addressing these issues, but we know what state the NHS is in, and as much as MS is huge for us and very dear to our hearts, it’s just one more thing the NHS has to sort out. So I don’t think we’re letting the NHS off the hook, far from it. We’re actually giving the NHS a leg up, a kickstart. We’re saying: we’ll do all the initial hard work. We’ll get people in post, and we’ll meet this unmet need for you, help you make a difference to people with MS. But then you have to pick up the purse strings and get on with it.

 

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