A terminally ill mother from Derrylin has spoken of her disgust after she was declined disability benefits because she did not fit the criteria.

Lorraine Cox was diagnosed with Motor Neurone Disease (MND) in August of this year yet she had no access to certain benefits because she did not pass the initial assessment for Personal Independence Payment (PIP). It was only after an appeal that the basic allowance was granted to her.

“I started off learning the guitar a year and half ago and realised my hand was weak and couldn’t hit the chords and that is pretty much where it started from. I have had a guitar since I was a child and always wanted to learn it properly and I always wanted to play and couldn’t hit the chords and the sound wasn’t coming out,” explained Lorraine.

“I went to the doctor and I was urgently sent straight away for an MRI and electrical studies. Then there were repeat MRIs and we kind of knew after a few months. I discussed it with my neurologist and what his suspicions were.”

After a conversation with her neurologist in March, Lorraine decided to apply for PIP. The assessment was carried out by Capita on behalf of the Department of Communities and this initial assessment was the beginning of an extremely frustrating time.

“The documentation in the report was completely inaccurate. One of the points I will never forget. She documented that my pincher skills weren’t severe. I actually have no pincher skills. I can’t lift anything. I can’t type anymore. I type at work with one hand.

“It was a box tick job. She asked me to stand up and walk. That was back in March.

“It wasn’t in my leg and they are basing that on March but this is a progressive disease. Now I’m a lot further on.”

Lorraine was declined benefits as she did not fit the criteria. She submitted an appeal in June with the outcome of that only being delivered three weeks ago which resulted in her being approved for basic allowance but being declined for the enhanced and mobility allowance which she is appealing for again.

And like the last time it is a frustrating waiting game for Lorraine as she tries to get things in order.

“Everytime I rang it was a closed door. No timescales just that I will be told when I am told. There was never a point of contact, a manager or anyone that was available to come to the telephone to explain the process. There didn’t seem to be a process, you were just put in a queue and dealt with whenever. There was no importance put on it or priority.

“I should not have to deal with this stress.

“I don’t need stress in my life because it can escalate it and I have other stuff I could be dealing with. This should be a given. It shouldn’t be closed door after closed door and I shouldn’t have to be fighting.

“As a terminally ill person it’s a basic right. I’m making a voice and a stand against the system. I have been working since I was 17 years old. I pay my taxes and have never been unemployed.

“Why should I have to fight for this basic right. It’s not even a huge pile of money.”

With three young children to look after, Lorraine has to keep moving forward and as the disease progresses down the left side of her body, her children have been a massive help for her.

“I keep busy because that’s my way of dealing with it and work is my distraction but it is hard. It’s hard knowing I’m never going to be there for my children.

“I have to keep going. I don’t have an option to fall apart. I have to keep my existence, the normality of everyday life as normal for my kids for as long as I can.”

Lorraine says she is overwhelmed by the support she and her children have received since being diagnosed especially from her sister and her husband, Fionnuala and Vincent Martin, her best friend Ruth Loftus, neighbours and friends, her employer, the NHS staff and UUP Councillor for Antrim and Newtownabbey Borough Council, Robert Foster.

And with all this support, Lorraine is determined to keep on fighting against a system that she believes has let her down.

“I want to highlight the fight I have had, it’s disgraceful. It’s disgusting. I can’t even explain how shocked I am. If it highlights the system and opens doors or changes criteria then it will have been worth it. It is an eye opener to the system.”

As the disease gets progressively worse, Lorraine does not know how long she has left to live but that won’t stop her leaving behind a positive legacy for her family.

“All you can do is leave a legacy and good memories and that’s what I am going to do. Start living and filling in as much as possible doing as much with them as possibly can.”

The Impartial Reporter asked the Department for Communities yesterday (Wednesday) to respond to the issues raised by Lorraine. They had not responded by the time we went to press.