Questions about MS? Call us on 0808 800 8000
A photo of Mary standing outside in front of a house

It's taken me nearly a year to see a specialist

Mary

I was referred to a specialist back in September 2019, and I've only just had an assessment.

I was diagnosed with relapsing MS in 1983. Most of my MS symptoms are invisible ones – I have a lot of issues with my bladderfatigue and sight. Now my mobility isn’t as good.

It’s very gradual. It seems the older you get when you have a relapse, the longer it takes to recover, and I don’t regain all the abilities I had before.

Long wait to see MS physiotherapist and urologist

Months before the pandemic, I'd been referred to the physiotherapist at the local hospital. But everything was shut down because of coronavirus. I've only just been able to see them.

I was also meant to have an appointment with a bladder specialist. They were about to start giving me Botox injections, to stop me having to rush to the loo. But again, because of coronavirus, the appointment was cancelled. It’s now nearly 12 months on from when I was first referred to a specialist, and I’ve only just had an assessment this week.

I live on a farm in the Scottish Borders and we have one hospital covering a big area. Because of the pandemic, many of the wards were turned into coronavirus wards and lost of services were stopped.

Pilates and exercise for MS before coronavirus

Before the pandemic, I was doing Pilates once a week, which helped me keep mobile. I did have good intentions to try to do it by myself, but I haven’t. I think it’s reduced my mobility. I can’t walk for as long and my joints don’t feel as good, or my bladder.

I used to roam the hills all day but now I can only manage a few miles. That’s one of the effects of MS, it takes away things you like doing.

The changes have impacted my mental health too. I’m lucky, I live on a farm so can go outside anytime. But I can no longer go out walking with friends if they’re walking the hills nearby.

Access to MS support in rural areas

I do think it’s important to emphasise the lack of access to services in rural areas. Even if services had been available, people don’t want to go on public transport to get there.

The day hospital, where all neurology services are based, has been turned into a coronavirus assessment unit. The neurologist and MS nurse are now sharing an office with other doctors and can’t see patients.

They’ve been doing telephone consultations, but for a lot of people they aren’t enough. I had a telephone call with the MS nurse but we couldn’t really achieve much. Even if I had said something was bothering me, she wouldn’t have been able to refer me on to anyone.

We need more local MS services

I feel it’s been hellish here. Where I live, the internet access is so bad it’s not worth trying to find YouTube videos or online classes. I have a laptop to join Zoom calls, but they haven’t brought fast broadband to our village.

My nearest big city is Edinburgh, about 40 miles away. I wouldn’t want to go that far to access services. The waiting lists are longer there too.

More local services are needed, otherwise it just costs the government more in the long run.

Everyone with MS should get the support they need, during the pandemic and beyond. Ask your local health leaders to take our pledge now.