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Photo of Ayad who has MS. Text reads: #BackThe1in6

Getting in touch with services felt like my part-time job

Ayad Marhoon

I was first diagnosed with MS when I was 21-years-old – I’m now 24. Over the course of the last 2 years I’ve gone from being able to cycle, skip and go to the gym, to now feeling anxious about leaving the house.

Things have changed a lot for me. The condition has progressed massively. My legs are not as strong as they used to be. The majority of the time when I go out I either use a walking stick or a wheelchair.

Trying to reach the right people

Before the pandemic I got in touch with my consultant to let him know that things were getting worse. And then covid-19 happened and things continued to progress. 

Understandably during the pandemic, it wasn’t possible to have face-to-face appointments, however my condition was rapidly declining. Getting through to a consultant about this was almost impossible, even telephone appointments were far and few.

Every morning I’d put a couple of hours aside to get in touch with the NHS. Just to get through to somebody, to be able to talk about the progression. At times this felt like a part-time job.

There was always a difficulty in reaching the person you wanted to reach. It was kind of a carousel. You go round and round and try to get through to the right people and you end up in the same position as you started.

You can easily sense that there is a lot of pressure. It’s the NHS and you want to bear with them but there are some things that are inexcusable.

I could feel my MS was getting worse

Week on week, month on month, I could feel things were getting worse. It reached the point where I needed access to my consultant.

I got a telephone conversation with my consultant. In one of the reports, after that telephone consultation, he wrote that he thought it was more of a psychological thing and it wasn’t necessarily progressing.

As an MS patient who was feeling the deterioration day on day it really angered me. I didn’t feel I was being taken seriously. For so long you try to remain patient but there are so many things that happen that make you frustrated.

NHS staff are overworked

I see it in friends and family - they tell me stories of the targets they have to meet and the work that they have to do and the hours that they have to put in.

I don’t think they had the support and the funding from the government to be prepared for a situation like covid.  

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1 in 6 people in the UK live with a neurological condition. We're calling on the UK government to #BackThe1in6 so they can access the services and support they need.

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We updated this blog on 08-06-2022