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The post came through the door and my boyfriend passed it to me to open. There was a letter from the DWP saying that Disability Living Allowance (DLA) was being replaced by a new benefit called Personal Independence Payment (PIP). It said I was eligible to receive the forms which they would send out soon. I didn’t think any more about it really as I have been in receipt of DLA since the age of three years old due to my congenital muscular dystrophy.

In July 2016, I received these forms which I filled in and sent with supporting documents from my consultants and GP.  I knew they were doing assessments on people but I didn’t think they’d want to assess someone who has had a muscle-wasting condition from birth.

In August, my boyfriend and I went away to visit family. When we got home from our break I went through the post to find a letter asking me to attend an assessment on 8th September at 9am. It was 9th September when I opened the letter and I phoned them straight away, apologising for not attending the appointment but I was away.  The lady said she would rearrange for another appointment.

Two weeks went by and I received a letter stating I was no longer eligible for DLA and not entitled to PIP. My heart sank. I got straight on the telephone to DWP. I was told my case had been closed. I explained what had happened but apparently there were no notes on my case from the lady I’d previously spoken to. I was told someone would call me within five working days to discuss this matter. I gave my details again so they could contact me.

I didn’t receive a phone call within the five working days. I called back and they told me they had phoned my house phone three times. I explained I had been in, carers had been here, but no phone calls from DWP and no voicemails if they had called.  My stress levels were high; I am already struggling daily in pain and stress does not help.

I was told again that I had to wait another five working days!  On the last day, 7th October, I received a phone call from a lady from DWP. She asked me why I didn’t attend my appointment. I explained again as to why. And she said, okay we accept your reason, we will re-open your case and send you an appointment. She said it would be 6-8 weeks. I asked if it would be fast tracked after everything I had already been through. She said no.

When I thought things couldn’t get any worse for me, I then received a letter from Motability saying I had a week before I had to return my car. I screamed out crying, I was devastated.

I phoned Motability and they agreed to let me keep it for another week so I had two weeks to try and get my assessment completed, to be told I am eligible and for the report to be written and sent back to be processed. I got straight on the phone to DWP begging them to fast track my appointment. They just said no.

So within a month and a half I was told I was not in receipt of DLA or PIP and now our car which my partner had paid the £540 deposit for and nearly £1000 of extras including heated seats to help my pain on long journeys.

I have been poorly because of all the worry and I developed blisters on my face from the stress. The only thing I thought I could do was to tell the nation what I am going through. I am sure I am not the only one.  I wrote a letter addressing the DWP so the public could read it. I posted it on Facebook and wrote to my local MP for help.

My letter was picked up by my local newspaper and the day after I received a phone call informing me I would have a home visit for my assessment on 2nd November at 12pm. I was pleased they were finally taking notice of me. I said I had one week before my car had to be returned. He said not to worry. I don’t think these people understand what it means to have their form of transport taken away from them. I wouldn’t be able to attend physiotherapy, hydrotherapy, hospital appointments, and just normal life stuff that people do.

Before I had the assessment I did a pre-recorded television interview on RT News, supported by Nic Bungay from Muscular Dystrophy UK, about what I have been through.

The assessment was completed by a lady who just asked questions about why I can’t have a bath and get dressed myself… erm because I have congenital muscular dystrophy. Every question had the same answer.

At the end of the assessment, I asked her about the man I spoke to from her department, as he’d mentioned my Motability car. She responded ‘I don’t know who he is, or anything about a car’.

So the worry continued. I had two days before my car had to be returned. I felt sick with worry.

The next day I received a call from RT News telling me my interview was being aired that evening. The reporter asked for my NI number so they could get a quote from the DWP about my case, which I was happy to give to them.

After my interview was broadcast I received a call from DWP that night saying they had made a decision and I would be awarded enhanced rate mobility and enhanced rate care! This meant I could keep my Motability car.

I cried once I got off the phone, I had finally won my battle. I felt like a weight had been lifted off my shoulders. But reflecting back, why should I have to fight so hard for something I should be entitled to and be treated so badly?

If you are in a similar situation to Vicki and need support, please call Muscular Dystrophy UK’s Information and Support Team on our free helpline:

0800 652 6352 (Mon-Fri, 8.30am-6pm)
or email us at:

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