It’s approaching three months since I first started the universal credit process, after being medically signed off work, on long term sick leave. In that time, I have had two commitment meetings with my work coach, which destroyed my confidence and made me feel like a failure and a burden on society. I have been told that despite medical evidence, written from my GP, who has known me 10+ years, stating that I am unwell, with suspected gastroparesis, I am available to have interviews immediately and I am available to start working immediately. According to the NHS MUST Tool which measures malnourishment, I am at high risk of malnourishment, increasing my risk of sudden death. I’m sure that you can understand that hearing this information has been, in itself, traumatic.
Despite all of this, I have been told that I have to think about how I’m planning to get back into work. Being off work is not a lifestyle choice, however it would appear that being unwell isn’t a valid reason to not be in work. I’m meant to be job searching every day. I’ve tried to do this, but the reality is that I am not well enough to be trailing through websites to find work and I also find it an incredibly demoralising experience, looking at all the jobs that healthy me could do, but are an impossible task for me when I am this unwell.
I’ve also been told that I need to be prepared to travel up to 90 minutes, when job hunting. When I was informed of this, I questioned it, due to the fact that I cannot travel for three additional hours in total. I have a car and I can drive, however, due to EDS, I experience joint dislocations daily. Driving long distances puts more pressure on my joints and I refuse to put myself or other road users at risk, by driving for longer and potentially experiencing joint dislocations. Can you imagine the potential danger if I was driving on the M40 to London and my knee or hip dislocated?
When I saw my work coach last week, to hand in my latest sick note, I had made the effort to look a little but more presentable, as in, I was wearing something other than tracksuit bottoms and had washed my hair. My work coach told me that I “looked better”. That’s the beauty of invisible, chronic illnesses: you can’t see them. It’s like being an idiot, you can’t always tell that someone is an idiot by sight, but that doesn’t change the fact that they are an idiot.
When I first started the Universal Credit application, I have no idea how difficult the process would me. It still makes me so sad and angry that disabled and vulnerable people are being failed by a system which is meant to be helping them. As I have said in previous posts, the whole application has had the affect of making me more unwell and dealing with the feeling of being such a failure has been hard to adjust to. The support that I have received from people has, honestly, been overwhelming. The Mighty have published my original open letter to Theresa May and I have been approached by other agencies and I am still deciding the best way of moving things forward in that respect. I know that I am just one person, except what I have experienced are not experiences that are isolated to just me. The system is broken and I am determined to fight the unjust nature of a system which should be helping, not penalising people. I’m not just fighting for me, I’m fighting for the people who are unable to fight themselves.
But I accept that I am just one person and I don’t have the power to make the changes that I desperately want to make.
So, where do I go from here?
As well as sending Theresa May a copy of my letter, I also sent a copy to Layla Moran, my local MP. I received a reply from the prime minister’s communications offer, telling me that Theresa May appreciated my letter (I think not), it had been passed onto the DWP and that I could expect a reply from them. As of the 24th April, I am yet to have a reply from them.
I had a more positive response from Layla Moran and would go as far as saying that her support and overall kindness made me a little emotional. She was very honest and fair in her responses to me: it is incredibly unlikely that the Universal Credit system will be abolished due to the fact that the Conservative government have invested millions and millions of pounds in the implementation and the rolling out of universal credit, as well as investing further large sums of money into “fixing” the problems that arose as a result of the system. However, oppositional parties have succeeded in managing to secure changes to the Universal Credit scheme, to hopefully make it fairer and less traumatic for genuinely disabled and vulnerable people who are in the process of applying. As well as this, I have been assured that all Universal Credit problems are noted. Stephen Lloyd MP leads on social securty benefits for the Liberal Democrats in Parliament and he routinely questions Government ministers about Universal Credit implementation. Layla is also in the process of chasing up my reply from the DWP.
Layla Moran also validated the fact that I’m unwell. I hadn’t actually realised that the demoralisation from the commitment meetings had resulted in me feeling like a fraud and not sick enough to not be in work. My work coach does not have a medical degree and has next to no medical knowledge, but his attitude, combined with the system in general, has made me question on more than occasion if I had the right to be trying to claim benefits, to financially support myself at a period of time when I am too unwell to work.
I am unwell. In fact, I am really unwell. I did not ask to be in this situation and more than anything I want to be working.
Today I received a questionnaire asking me about my health conditions and my answers on this will depend on whether I need a full work capability assessment. It’s a similar form to the PIP form, which my life slightly easier and I’m hoping that a combination or my answers and medical proof will be enough to evidence to show that right now, I can’t work.
It remains a slow and somewhat painful process but people are fighting to make the system more just. I’m still fighting and dare I say it, members of parliament are fighting too. It might not be front page news, but it is happening and I’m not giving up.