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“When I met my MS nurse everything started to make sense”

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Last summer, thanks to our incredible supporters, the first MS Trust-funded MS specialist nurses arrived at Leicester Hospitals. Since then, we’ve also helped to bring new nurses to Bradford and Lanarkshire, and soon Hull. Together, they’ve made a world of difference to thousands of people living with MS.  We caught up with Leicester nurse Jon Maisey to find out about his first year in post, and Jenna Chudasama, to hear about the invaluable support he’s given her. 

An MS diagnosis can be a lot to get your head around. There’s the unpredictability to navigate, the invisible symptoms, the different treatment options, and the emotions that come with knowing you’re going to have to deal with the condition for the rest of your life.

Having an MS specialist nurse by your side through the highs and lows of that journey is absolutely vital. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support, and someone to turn to when you feel like you’re having to deal with MS alone. 

Jenna Chudasama, a 31-year-old teacher from Leicester, has been lucky enough to experience this invaluable support first hand. “When I met myMS nurse everything started to make sense,” Jenna remembers. “I could ask the questions I wanted to: What is MS? How is it going to affect me and my life? I left my first appointment thinking, ‘I can do this; yes I’ve got this condition, but I can deal with it’.”

Jenna’s MS nurse is Jon Maisey, who was the first nurse the MS Trust helped recruit and fund as part of the charity’s pioneering Specialist Nurse Programme, which helps to bring MS specialist nurses to the areas across the UK that need them most.

Jenna’s bond with Jon was ‘instant’, and has been unwavering in the 12 months since. “I’m a natural worrier and I need answers to my questions or they will just fester in my mind and that’s where Jon comes in. Whether it’s having issues with a DVLA application or concerns about my holiday, Jon is able to give me an answer instantly, and if not, he calls back when he does have the information.”

"I am so grateful and I have always felt so blessed that I have a nurse who is constantly there to support me in every way"

In fact, it was Jon’s support that actually persuaded Jenna’s husband to run the London Marathon for the MS Trust back in April. “He attended the appointment with me and he could see I was able to get the answers I needed. Jon was of course funded by the MS Trust, as well as trained and supported by the charity, so he wanted to do his bit so other people have the same support that I have.”

For Jon, his first year in post has been a “whirlwind”, but a very rewarding whirlwind, especially when he hears stories like Jenna’s. “It’s why I became a nurse, to help people, so when you hear that you are making a difference, it’s everything! All we want to do is to make life easier for people and that’s always what I aim for. Whether it’s through managing pain or helping someone with their mobility, whenever we can make a difference, it feels amazing.” 

To the MS Trust supporters who make our work with nurses possible, Jenna and Jon say “thank you”: “I am so grateful and I have always felt so blessed that I have a nurse who is constantly there to support me in every way. It’s worrying for me to know some areas don’t have that support. I can’t imagine not having Jon to contact, with anything really, so a huge thank you.”

Looking back on the first year of the Specialist Nurse Programme

It was back in 2016 when we first launched our campaign to fund new MS specialist nurses in the areas of greatest need. Since then, some amazing progress has been made as we work towards our goal of ensuring no one is left to manage MS alone.

In February 2017, we announced we would be working with the MS team based at Leicester Hospitals,  the first team to be involved in the Specialist Nurse Programme. We helped to recruit and fund two new MS nurses to support people living with MS in the area, and Jon Maisey and Joanne Pughe have now been in post for over a year.

“The additional nurses have made a tremendous difference,” says Allison Smith, MS nurse in Leicester. “They’ve had a huge impact, both in terms of the number of people we are able to see and the quality of our service.”

In April 2017, we marked MS Awareness Week by announcing Bradford as the second site to benefit from the programme and Sally Fox was recruited to the role in November last year.

We’ve also been working with NHS Lanarkshire to improve access to MS nurses and ensure people with MS get the support  they need. A lack of MS nurses had been a long-standing problem in the area. When the experienced MS specialist nurse left to work elsewhere within the field of MS, the MS Trust worked with the Lanarkshire team to fill the vacancy, as well as funding an additional MS nurse through the Specialist Nurse Programme, and supporting the recruitment of a neurology specialist nurse, to provide care to both people with MS and Parkinson’s.

Claire Millar, Claire Purdie and Julie Wilkie started in post in September 2017 and, nearly a year on, have been making great progress. “The MS Trust Specialist Nurse Programme has helped the Lanarkshire MS nurse service to develop and flourish, and most importantly reach people with MS in Lanarkshire to support them and their families to live well with MS,” said Karen Maclure, service manager.

But this is just the start. We recently announced that we’ll be helping to fund a new MS nurse in Hull, and we’ll be updating you on further sites very soon. We know there is still a long way to go and many people across the country still have to manage their MS alone, but with your support, we’re determined to change that.

How you can help make a difference

To enable us to continue to support and fund nurses, we need friends! Friends of the MS Trust are dedicated supporters who come together and help us reach more people in their local community. Could you organise a cake sale, coffee morning or a quiz in your local area?  Or perhaps organise a collection in your local supermarket? You can find more information here.