My name is Carol, and I have multiple conditions including hypermobile Ehlers-Danlos Syndrome and bone-on-bone Osteoarthritis. My conditions cause chronic fatigue and have a detrimental effect on my mental health.
I can’t walk far due to pain, breathlessness, and fatigue. My joints and soft tissues are fragile, and I am prone to tendon and ligament damage from the smallest of daily living tasks.
My mobility is severely limited, so I use a mobility scooter. I am dependent on my blue badge and have a registered assistance dog.
My PIP assessor didn’t even treat me like a human
I have received PIP for several years. My last assessment was two years ago, and it was horrible.
To start with, it was at an assessment centre where there wasn’t sufficient disabled parking, and it began forty-five minutes late. It all seemed to be utter chaos.
My assessor didn’t even treat me like a human. She seemed totally disinterested and spent a lot of the appointment staring out of the window.
When she did look at me, she would say in a very condescending tone, 'Oh, poor you' repeatedly. I was trying to have some sort of rapport with her to make it a less unpleasant experience, but she just seemed cold and distant.
It would have helped to have an assessor who understands my conditions
She clearly didn't know much about my conditions. I don't know if she'd even read my medical evidence.
It would have really helped having an assessor who understands my medical conditions. I have a lot of conditions, so I realise I couldn't have a specialist in all of them, but even somebody more medically qualified in my area would have been helpful.
We're asked to provide all our medical consultants’ contact details but none of mine have ever been contacted for their opinion as far as I’m aware.
My paperwork contained someone else’s details
I used to get lower rate daily living and mobility, but the mobility element was removed completely at my review assessment.
I challenged this, as my medical records clearly show that my left hip is crumbled and misshapen and I am under the regular care of an orthopaedic surgeon. I was told that, as I said my assistance dog gets items off low shelves in supermarkets, this was evidence that I can walk around a shop.
My report was full of factual inaccuracies: for example, I’d been in a state at the assessment. I remember getting teary and clutching my chest, saying, 'I'm sorry I'm getting a bit panicky' and the assessor offered me a tissue out of a box on her desk. But her report said I wasn’t anxious.
I don’t know if they copy and paste some of the information they send back to you, but I’ve certainly had paperwork with another claimant’s information in the middle of my own.
I was so distressed by the assessment process that I couldn’t face appealing
The loss of my mobility allowance removed my automatic entitlement to a blue badge, without which I cannot get to medical appointments, or work.
I reapplied to the Blue Badge team, and they didn’t seem at all surprised by my story. They re-assessed me and thankfully, they re-issued my parking badge. They seemed as frustrated with the situation as I was.
I challenged the PIP decision through Mandatory Reconsideration but it made no difference. I didn’t go for a full appeal because I was exhausted after the process. I just gave up. I was so distressed by the whole reassessment experience and so angry and tired.
I work, I have a home to keep, I just didn't have the strength to take them on. It's all too upsetting and exhausting.
I’m terrified I might not have enough to live on
I think I spend about £7,000 a year on health-related costs, which is a huge amount of extra money for anybody to find out of one salary.
I think somebody like me, who cannot walk anywhere without significant pain, should be entitled to Motability and vehicle adaptations, but I've never managed to get it. Every time I buy a scooter for myself, it costs me about £800. A hoist to get the scooter in and out of the car is over £1,500. I don't feel I've ever been given the help that would really benefit me.
My assistance dog obviously comes with costs every year that I have to cover - food, vet bills, beds, insurance, etc. If I couldn't afford the costs of my canine carer, would I lose her?
I don't know how long I'm going to be able to work for; my health is getting worse. I get more diagnoses every year, so I'm terrified that there will come a point where I can no longer support myself and I might lose my home.
I live in permanent fear of reassessment
The whole system makes me anxious, makes me worry for my security, and makes me feel like a lesser human.
It's a horrible process and I wish they wouldn't make them so regular because nothing about my condition is going to improve.
My bones aren't going to grow back, and my soft tissues aren’t suddenly going to start working properly after 40 years.
Many disabled people have had experiences just like Carol’s.
Sign our petition for disability benefits #WithoutTheFight.