As promised, after the article about how people with sickle cell conditions were denied benefits (original article here), I thought I'd talk a bit about my experience.
I have been fortunate enough to have worked my entire life, since about the age of 18. I've worked in pubs, umpired netball, private tutored, teaching in schools and even during my course, I undertook student ambassador roles. Open days, women in science, careers and many other events I have worked, help to pay for my fuel costs (Ipswich is a trek from me, 70 odd miles one way). I have been fortunate to never have needed to claim job seekers etc but this is about when I did need some support.
When I was really struggling a while ago, I applied for PIP (personal independence payments) they are the new version of disability benefits that the company employed to undertake the assessments get bonuses for each claim denied (see below for links to newspaper articles on this). Needless to say, the usual case is some people challenge the denied claim and are granted support, many just are unable to bother... But the article talks about the fact that most people with sickle cell disorders had their claims were withheld because the condition, which is "invisible", does not fit the government's assessment criteria.
In my case, because at the time I could walk ok and for a set distance, was undertaking my radiography course (I did provide evidence of my absence record) and I could zip up my clothes by myself etc, I was denied PIP. I had applied for adaptations at home as due to my sickle and the fibro, I have severe joint pain and my back and wrists regularly play up and now my hip etc. All I wanted was help for a handle to be able to get in and out of the bath, handles for my shower, new crutches for when my hip or back went.
Nobody completes the amount of information and forms for PIP for no reason. It includes references from your GP, hospital specialist (at the time I was under 5 different clinics) and pages and pages of questions. I've added some pictures of the basic questions but there is more to the forms.
Once this is completed, you are invited to an assessment, mine was 25 miles away or more. You get there and they ask you questions, many f which are embarrassing and upsetting and then they do some basic tests like can you touch your toes (I'm hypermobile, of course I am going to be able to touch them but that doesn't mean I am not in agony etc), grip strength and basic neurological tests. I can honestly say it was the most un-dignifying meeting in my life and that is saying a lot as I had a tricky birth with the mini me!
The letter basically told me that yes they agree that I need mobility aids and support but I did not meet the criteria because I didn't score many points. This is because the questions and scoring systems are not suitable for people with sickle cell disorders. I did not bother to challenge my ruling. Instead, I did some other things like swallow my pride and apply for a blue badge, to help reduce the fatigue I get from walking excessive amounts etc. I got reasonable adjustments from my placement hospital and was granted NHS disabled student allowance which got me some adapted equipment for university and home which I was grateful for and got me through my course.
Many people are not as lucky as I am. They face regular hospital admissions, blood transfusions, medical redundancy and many other factors that impact their ability to work and so they have to rely on support.
I am not going to lie, I know there is a chance that this may become the case for me too. But for now, I'm working on getting back on my feet asap and back to the gym (and if miracles happen, back to netball) because, the stronger I am, the longer I can stave off any complications...
Articles from the BBC concerning PIP, Universal Credit and the companies involved.