Physical Health United Kingdom Project #33718

#strongerforlonger - Muscular Dystrophy therapies

by NMC Midlands Ltd

Project Report | May 26, 2020
Support through lockdown and beyond

By Natasha Sweet | Philanthropy Manager

The coronavirus pandemic has thrown challenges at all of us. But for people with muscular dystrophy, there are additional concerns – not only are many classed as clinically highly vulnerable should they catch COVID-19, they are worried about the effect of lockdown on their muscles, their movement, and their mobility. Many are dealing with increased pain, fatigue or stiffness in the absence of regular physiotherapy, and as a result of restricted movement while shielding.

One of the biggest fears that people with muscular dystrophy have right now is what impact lockdown will have on their mobility long-term.

The Muscular Dystrophy Support Centre is providing a range of services remotely to help people continue to manage their muscle-wasting condition at home, and minimise the negative impact on their physical and mental health during the crisis. These include individual guided therapy via videoconference, group physio, breathing and exercise classes online, twice-weekly online social events and a private chat group on Facebook.

Whilst there is no substitute for hands-on physiotherapy or other physical therapies, feedback from some service users shows that they are finding unexpected benefits in the new online format. For example, remote therapies in small groups has led to the feeling of increased community among others with the same or similar conditions. It is also easier to attend more frequently, with many now benefitting from several therapy sessions per week. This is helping them to stay active and in control of their muscle condition in spite of the lockdown.

Emily’s story helps demonstrate why this is so important:

I’m Emily and I’m 33 years old. Back in 2015 I was diagnosed with a rare form of muscular dystrophy, although my exact diagnosis is still puzzling the doctors, which is intriguing! I first noticed something was wrong several years before that even, but in 2015 I found I could no longer go upstairs, my legs couldn’t manage it any more.

In normal times, I have physiotherapy or osteopathy at the MD Support Centre every 2 to 3 weeks. I get a huge benefit from the hands-on approach of the therapists there, keeping me mobile. I always feel better after my visits, I don’t have to explain myself or my condition, I just feel at ease.

Life is strange during the time of coronavirus. I work as a Visitor Assistant at a local attraction but I’ve been furloughed, so I’m not getting out much now. I live on my own, I get my shopping delivered, but about once a week I go out in my car, usually to the burial ground to visit my mum’s resting place. One of my biggest worries is muscle loss and losing the “muscle memory” of walking up the path and getting in my car, which can be challenging. I think a lot of disabled people are really struggling physically and mentally, and they are isolated. It’s really important to me to stay positive and not lose my confidence.

Ironically, I now have more going on in my life than before the crisis. My twice-weekly online exercise classes are giving me something to get up for – I like the group aspect of the classes and find it a good motivation, I wouldn’t stick at exercises if I had to do them alone! There’s no substitute for the hands-on physiotherapy I normally have, but the classes are the next best thing as far as I’m concerned, and its great they are twice a week. The centre also has a coffee morning on a Wednesday and Cocktails and Mocktails on a Saturday, both on Zoom. Once again these are something to get myself ready for, knowing we’ll be on camera.

One of the unexpected benefits of all this is I’m getting to know lots of new people, I’ve got a busier social life than before! Everyone is staying quite positive which is exactly what I like, because I don’t want to take on the victim role. I’m just so grateful to the Centre, now more than ever, for providing such an invaluable service to us all at this time.”

Thank you so much for your support for our work. With your help we will transform access to therapies for people with muscular dystrophy.

Links:

Visit our coronavirus appeal on our website

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Jan 24, 2020
A professional perspective

By Natasha Sweet | Philanthropy Manager

We hear a lot about the impact of our therapy service from service users, about how it enables them to take back control and offers an opportunity to live well with their condition.

One interesting perspective we haven't yet shared with you though, is that of a health professional in the neuromuscular field. Alice Roe, Clinical Nurse Specialist, works with neuromuscular patients at the Queen Elizabeth Hospital in Birmingham, one of our sources of referral. Here she shares her perspective on the unique offering at the Muscular Dystrophy Support Centre and why it is so important.

"The support that the Muscular Dystrophy Support Centre is able to give patients is phenomenal. The patients that I have spoken to have all praised the depth and breadth of knowledge that the service providers at the MD Support Centre have been able to offer and they feel that the treatment they receive is complimentary to the treatment that they receive from the NHS services.

“The fact that as a nurse, I can offer an alternative to these patients is wonderful. Unfortunately very few treatments exist for these cohort of patients and so therefore the focus has to be on how we can manage symptoms. I feel that's exactly what the MD Support Centre offer. I also feel that fact that it is run by those with muscular dystrophies themselves, also helps patients as it gives them an alternative outlet to speak to someone who has a similar condition to themselves.

“Patients are also immensely enthusiastic about the satellite clinics that have been set up and that access for them will be closer to home. This offers a unique opportunity for me as a clinician to host clinics at these satellites, so that patients have easier access to the services and support that I can offer them. It also gives potential for unsupported patients to be referred in to the services we offer here at the QE (Queen Elizabeth Hospital, Birmingham), as good professional links exist between myself and those working at the MD Support Centre. The help they provide this patient group is invaluable.

“This includes the emotional support that they are able to offer. Patients that I speak to feel very comfortable in the surroundings at the MD Support Centre, as it is run by people with muscular dystrophies. Therefore the empathy and emotional care which can be offered through this peer-to-peer support is vital. It is probably something which they cannot access anywhere else. Unfortunately psychology and mental health services for neuromuscular conditions within the NHS can be difficult to come by, but the care offered by the MD Support Centre, does help to bridge this gap."

Alice Roe, Neuromuscular Clinical Nurse Specialist

Thank you for supporting us. By donating to our #strongerforlonger project, you are helping us to share and spread the impact of our work beyond our own region and make a real difference to the lives of people with muscular dystrophy.

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Oct 21, 2019
Working to support people in the MD community

By Natasha Sweet | Philanthrophy Manager

Dear Friend,

You subscribed to email updates from #strongerforlonger - Muscular Dystrophy therapies by MD Support Cetntre (NMC Midlands Ltd), a project on GlobalGiving. Here's the unedited update from the field:

Supporting carers and families
By Natasha Sweet - Philanthropy Manager

Vicki volunteering at the clinic

Supporting carers and families affected by muscular dystrophy

Muscular dystrophy doesn’t just affect individuals, it has a profound and life-changing impact on whole families and loved-ones too. It can be very challenging and isolating to be a long-term carer, and life can change direction as a result. Access to specialist clinics through a centre like the Muscular Dystrophy Support Centre has many benefits for family members and carers.

Often, the search for specialist therapy is so all-consuming that we can forget how important it is for carers to have an outlet too. That’s why we are pleased to share Vicki’s story with you, demonstrating the positive impact a specialist clinic has not only for service users, but for carers like Vicki too.

Vicki’s story:

“I originally got to know the Muscular Dystrophy Support Centre through my son, Jonathan. Jonathan had Duchenne Muscular Dystrophy, and he used to come to the Centre for physio and osteopathy.

Jonathan passed away in October 2017. I had spent the past six years of his life as his full-time carer, and a huge gap opened up for me. I used to spend a lot of time looking after my granddaughter Ivy Rose, but when she started nursery the gap opened up again. I had entertained the thought of helping out at the Centre, but I wasn’t ready. It took me a long time to pluck up the courage to even come back and visit, and it was a very emotional day. I know the place well and it holds so many memories for me.

I finally visited with my daughter and we chatted with the Centre staff. Ruth, the Chair of Trustees, mentioned needing volunteers to help with the safeguarding requirements – essentially meeting and greeting service users and taking them to and from the physio suite. It was my daughter who made me go for it – she said “Go on mum, it’ll get you out the house.”

I’m so glad my daughter said that. Volunteering at the Centre has helped me so much. My confidence had taken a major dive – I previously worked at a university but I hadn’t worked in an office for 6 years. I wasn’t sure how to talk about my time as Jonathan’s full-time carer at first. I had learnt so many useful skills while I cared for him, but I had no idea how to put this across to other people. I wasn’t even sure what type of job I’d like to do.

It took a lot of courage for me to begin volunteering, and I was very nervous! But it’s got me back into talking to different people – not just doctors – and I really like being back in a work environment. It’s such a nice bunch of people, and I enjoy talking to the service users. I’m pleased to be giving something back to the Centre for all the help they gave to Jonathan.

I would like to get back into work in the future and I know that volunteering will help me on my way. I’ve updated my CV, and I might look for something admin-related in a care setting, as this is an area I’d like to be involved in. Or I might launch a creative business on the side. Soon I will take the next step.”

Fundraising update:

So far we have raised £2,079 of our £3,750 target to begin producing a toolkit for clinics or free use by the muscular dystrophy community at large. Thank you so much for supporting us!

Together, we can transform access to specialist clinics for muscular dystrophy and give whole families the support and positive opportunities they deserve.

#strongerforlonger

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