Patient view

‘I couldn’t have coped without my nurse specialist’

Chrissie Powell, a nurse who has the rare neurological condition neuromyelitis optica, says the support she receives from nurse specialist Kerry Mutch has helped her cope

Chrissie Powell, a nurse who has the rare neurological condition neuromyelitis optica, says the support she receives from nurse specialist Kerry Mutch has helped her cope

Kerry_Mutch©NOC
Kerry Mutch was a finalist for the Leadership award in the RCNi Nurse Awards 2017.
Picture: Neil O’Connor

My nurse specialist Kerry Mutch, and the service that she runs for people with neuromyelitis optica (NMO), is a lifeline.

I was a staff nurse on a hospital reablement unit when I had my first attack in September 2013. I went back to work and things were okay for a while, then two years ago I started slurring my words. I thought I’d had a stroke.

My balance was badly affected. I was falling over, and having to lean on walls just to walk from one part of the house to another. My mobility went from being a bit unsteady to having one foot dragging behind me. I didn’t know what was going on.

I sounded like I was drunk. I went to the emergency department but my voice kept coming and going. Just as they were sending me home, I started slurring.

Waiting for tests

NMO is not something that is tested for in the emergency department. I was admitted to hospital to see what was going on, with tests including an MRI scan and electrodes on my head, but they all came back negative.

I spent months waiting for different tests. Luckily, they did tests for the antigen NMO and I went to Walton Centre NHS Foundation Trust in Liverpool, where I was diagnosed and started treatment.

I would not be able cope without the NMO service. NMO comes out of the blue and suddenly your body becomes the enemy. I am 31, but had to move back home and leave my job. It is not the life I envisaged for myself, but Kerry makes me feel that I am allowed to be upset.

Kerry is always at the end of the phone. She contacts me to see how I’m getting on, and liaises with doctors to make sure I am not wanting for anything or having any issues. My doctor contacts her with any queries because she is such an expert.

My nurse pushes for and recommends treatments. She sends me information and links up with all the services where I live, in the West Midlands. Having that extra support has been vital.

There is no miracle cure for NMO, and Kerry is there to reassure me when I get spasms in my legs. If I did not have someone to contact, I would not know if my symptoms were normal or not.

Value of psychological support

The clinic is great, and saves you having to attend hundreds of appointments. Everyone you need is there – nurses, doctors, dieticians, opticians, psychotherapists – it is a one-stop shop. I have found the psychological support particularly invaluable.

I wasn’t well the first time I went to the clinic, but now I can walk through the front door myself. I am one of the lucky ones, as I am not permanently disabled.

I am so grateful to the NMO service for enabling me to get on with my life. I did the Race for Life this year, and am now working on a telephone advice line. It is nice to still be the one helping others.


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