MSA Trust

A day in the life of an MSA Nurse Specialist

The MSA Trust has three MSA Nurse Specialists who support the MSA community, read on to find out about a ‘typical day’ ….

It’s really important that people affected by MSA find out how to contact us and realise we’re here for them.

When people are diagnosed with MSA their world can fall apart, they don’t know where to turn and we are often the only people they can talk to who know anything about MSA. Unfortunately many health professionals have never heard of it.

After receiving an MSA diagnosis people might be overwhelmed. Their experiences are individual and the symptoms are challenging and constantly changing so ongoing trusted support is vital.

In a typical year we’ll attend around 57 clinics at 11 different locations across the UK, providing face to face support to almost 350 people with MSA. Between us we also deal with around 5,000 telephone and email queries a year.

The calls range from explaining diagnosis and symptom control to people with MSA or their carers, GP referrals, talking to hospital staff who many not be familiar with MSA or talking to relatives who think their loved ones may have MSA. We will never rush people, this isn’t a call centre.

The Trust is committed to ensuring people with MSA have access to ongoing support and information, so our services are free of charge. We really want to spread the word about our services so people affected by MSA know they have someone to talk to.

It’s difficult to talk about a typical day as every person is unique. One of us kept a diary recently and it mirrors the experience of all of us. We work 30 hours a week but sometimes we have to be flexible in how we arrange our hours:

The weekend – ensure bags are packed for two clinics and overnight stay, reading for train, laptop, phone, call records.
Monday – leave home 4.45am, train to Manchester, read documents, check telephone messages and call people back, attend six hour clinic, meeting for an hour with NHS colleagues, check messages and call people back, write up notes, reply to emails.
Tuesday – attend Sheffield clinic, check calls and respond, attend six hour clinic, check calls and respond, check in with office, check and respond to emails, travel home
Wednesday – pack bag for Thursday with training materials and MSA resources, attend support group, catch up on calls, plan journeys and overnight accommodation for next two months, research venues for new support groups, forward new registration details to office, respond to emails, write letters, referrals to hospices, pick up outstanding work.
Thursday – leave home at 7am and drive two hours to a teaching session at a hospice, check and respond to calls, do teaching session, drive 1.5 hours to a support group, run the group, start three-hour drive home.
Friday – cover calls for colleague, email training and support group feedback to the office, respond to calls and emails, liaise with colleagues re future clinics, start presentation for palliative study day, complete consultation, start literature search for new fact sheet, update expenses, replenish support group supplies, reading for next meeting, email the office to send more MSA literature and resources.

What’s the hardest thing about our job? Having an insight into the impact MSA has on people’s lives, not just for the person with MSA but all those around them and recognising that their hopes and dreams for the future may be thrown into turmoil.

What’s the best thing about our job? Supporting people affected by MSA and helping them find some achievable goals and have the best quality of life possible.

If the Trust had more resources we could employ a fourth MSA Nurse Specialist, until then we’ll continue to be busy.

If you know anyone affected by MSA please let them know about us!

To contact the nurses click here

Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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Michelle Tracy
3 years ago

MSA is a terrible condition for all those involved and taking care of a MSA patient is tiresome both physically and mentally. Thanks to hard working nurses these patients get the treatment and care they so need.

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