Why I'm supporting the Back the 1 in 6 campaign
Victoria is a nurse living with relapsing remitting MS. In this blog, she talks about her experiences and challenges as a patient, and a healthcare professional. And she shares why she's supporting our Back the 1 in 6 campaign.
It’s no secret that the NHS is struggling. Lack of staff, resources and funding creates a disappointing and inadequate service for patients and healthcare workers.
My experience lies at both ends of the spectrum, as a registered nurse with multiple sclerosis (MS).
The nurse and the patient
I’ve been the nurse working a busy shift, caring for people feeling frustrated, angry and upset. They’ve been waiting weeks for a GP appointment or can’t get one altogether. They can’t see their specialist or they’ve been sitting in A&E for more than 10 hours. All the while they feel their condition is getting worse and no one’s listening.
No one enjoys working in these conditions. Seeing how difficult things have become while working your absolute hardest. But still not being able to provide people with what they need.
I’ve also been the patient struggling to access services for my own health. I understand the frustration, the anger.
A previous GP practice wouldn’t prescribe me antibiotics for a urine infection (UTI) without an appointment, which they couldn’t give me for four weeks. Most people with MS can relate to the fact that UTIs are awful for us.
We must advocate for change. But we have to remember our healthcare workers don’t cause our problems on an individual level.
They’re doing everything they can, but in challenging conditions.
Pre- and post-pandemic
The pandemic undeniably worsened neurological services, but it was difficult before.
I had my first MS relapse in my hometown in 2018. And I remember the words of the local A&E department very well “There’s only one neurologist in this area, with a six-month minimum waiting list. So you won’t be able to see anyone here.”
To say I was shocked and frightened would be an understatement.
Read more about managing relapses
My MS care is now under a different team. And, for that, I’m very lucky. But I do feel real concern for people living in areas where they can’t easily access neurology services. It seems like a postcode lottery.
The pandemic means many people don’t have the same access to their specialist. Two face-to-face appointments a year can become a single phone consultation. Or an access-as-you-need service. This is more suitable for people who don’t need much input. But it’s not great for people who need more intense support.
Managing a chronic illness can feel like having another job. It’s tiring. Especially when you’re expected to contact services and manage appointments yourself.
This is from someone who knows and works in the healthcare system. A lot of people don’t and might find the continuous admin of a chronic illness overwhelming. That’s why I’m supporting the Back the 1 in 6 campaign to call for change.
Back the 1 in 6
Together with the Neurological Alliance, we’re calling on UK governments to back the 1 in 6 and establish a Neuro Taskforce.
The Taskforce would offer a framework that means existing support services for people with neurological conditions can work together. This’ll help tackle the common problems we face which can include accessing treatment and services, and accessing mental wellbeing support.
Please show your support today by signing the petition. Together, we can advocate for positive change.
