Stepping on the rollercoaster - Parkinsons and the benefit system
Claiming for benefits can sometimes be far from an easy ride. This week, Paula, from a small market town in East Yorkshire, shares her experiences of caring for her husband Bob, who has Parkinson’s Disease.
When my husband was diagnosed five years ago our life as we knew it finished. Overnight everything changed. He had been self-employed, and to be honest by the time I managed to get him to agree to see a doctor - which took me almost a year of nagging and pleading - he was hardly able to walk. He simply came to me one morning and said: “I can't go on anymore”. That was when we stepped onto the rollercoaster.
It was a very traumatic time, suddenly he could no longer carry on his work as a self-employed gardener. I had to call all of his clients, many of whom had been with him for years, and many were in tears. I found myself comforting them on the phone instead of the other way around!
As someone who had hardly visited the doctors my husband was so lucky in the GP he was assigned to. His doctor was, and continues to be, incredibly supportive. It took from September to January though before he was able to see the neurologist, and rule out anything else such as a brain tumour, so this was a very worrying time. He was also unable to take any medication during this time as because they wanted to see him as he was - so to speak - and not to have any of the symptoms masked by medication.
It was at this time that I became embroiled in the benefits system, and it soon became clear to me how inefficient, complicated, and uncompassionate the system is. In one way we were lucky as whilst my husband was self-employed we had taken out a private insurance policy to cover any event like this, but like all of these policies that also took some months before it was up and running.
My husband very quickly received a form to fill in to apply for ESA, and it was just before Christmas when he had his assessment. I went along too, because as well as the Parkinson's he is profoundly deaf, and has been since birth. We had never thought of his deafness as anything he needed help for; we just got on with it. How naïve we were.
The assessment seemed not too bad, although I had to repeat everything that the healthcare professional said. English was not her first language, and she made no effort to speak up. Knowing how ill my husband was - and remember he had no medication at this time - we thought it was a forgone conclusion that he would be put into the support group. How wrong we were.
A few weeks later I took a call, and almost fell from my chair when they told me that he had scored zero points,and would have to sign on at the Jobcentre. To cut a long story short (or this will turn into a book) I got our MP involved, and made sure I made enough of a nuisance of myself that the DWP were in no doubt as to who we were. We managed to get the decision overturned at the mandatory reconsideration (MR) stage, and he has been in the support group until March this year when they asked him to reapply. Zero points again! I did the same as last time and it was overturned again at the MR stage.
ESA is finished now as Bob was 65 a few weeks ago. He has DLA for both care and mobility, and we dread the day when the ‘invitation’ to apply for PIP drops through the letterbox.
I was so incensed by the whole scenario that I decided I would write a book about the benefits system in the UK. Many new friends from the Scope Community have allowed me to write about their experiences - all anonymously of course. I am progressing well with the book, and hope to have it completed by end of September. If anyone else wishes to tell their story just let me know through the Scope forum.
I have also started a disability and benefits support group on Facebook. It is not to give advice, I am not qualified to do that. I think of it more as a virtual drop-in centre, so if anyone feels like joining for a natter, and a virtual cuppa, let me know.
Keep on fighting, I know I shall, and look after yourselves. Remember you are not alone in your troubles. Scope is a great place for help, information, and support.
What experiences do you have of claiming for benefits? If you’re a carer, do you have any similar experiences to share? Let us know by leaving a comment below.