Benefit, what does that mean again?

You know, you don’t really know the extent to how horrifyingly complex and stressful being disabled actually is until you need to apply for help. I naïvely thought it must be easy to obtain funding when you can’t work. Surely, you can show a medical letter to the Job Centre and they can give you what you need, right? Wrong. Evidently that is far too easy.

It’s all on the Government website but as soon as I started to apply for help, I realised I was in for rough time. Long forms, lengthy wait times and impossible deadlines is just the start. Next there’s the umpteen phone calls to cocky, sarcastic operators who seem to take great pride to kick you while you’re down, like some kind of sick sport. I called to correct endless errors and misinformation made by them. If they had bothered to do their job in the first place, I wouldn’t need to be calling again!… and breathe… and relax.

I’ve got 18 years NI paid and they still won’t accept me. I did not pay enough NI due to being at University full time prior to getting CFS/ME. I have no income!

Then there’s the long awaited award letter received with great expectation that this could end all my stress and angst only to be told a letter from the medic cannot be accepted as evidence for my condition. What? I mean, how is it that a Medical Professional (‘professional’ because they’ve spent years studying for their qualifications and know all about my daily routine from our sessions) is not accepted? Crazy! If someone said to me the system is set up to put people off applying I would completely agree. I don’t know what has happened to the world. Where is the care and compassion? I’m sick, I don’t want to be on benefits. I want to be well and working, living a life.

It’s not just benefits either. Trying to get my medications all in one place was like cracking the secret service. GPs not authorising prescriptions, unavailable Neurologists and a host of forgetful Secretaries. I was always on the phone chasing different prescriptions. I once went for 3 weeks without medication because of people not doing their jobs properly! Livid! I contacted a pharmacy, the Neurologist, my GP practice a second GP practice, a Facebook support group then finally went in person and spoke to what felt like the only person in the entire Northwest who knew how to get my prescriptions organised. It’s only taken 3 years!

My latest stress is with car tax. I’m entitled to 50% discount. Great. But can I do this online? Oh no, that would be too easy. For this you have to send 5 different documents through the post with a specific form and they only accept cheque. Cheque? I’m not even sure how to write one, ha! So, not only have I had to go to a Post Office to buy stamps but I also had to order an actual cheque book, print off a form, find my documents and then I’ll have to post it all. Did they forget I was unwell? What do they think the 50% discount is for? It’s beyond belief.

All this when most can just pay online. Come on DVLA, sort it out!

I may be frustrated at my experiences but all this ranting is not going to waste. I’ve spent the last coupe of weeks writing to the DVLA, my MP and several contacts within various All Party Parliamentary Groups in the slight hope someone will listen to make a change. I’m not holding my breath but I cannot sit back and do nothing.

For now though I wish you all well and hope none of you have to endure this fate.

Jacqui x

End note – I cannot leave without telling you the secret to have your GP sign a prescription….You must call the specialist (eg Neurologist, Rheumatologist, Cardiologist etc) and have them write a letter to your GP to authorise your GP to sign a prescription. It may take several days but then you just ask for your prescription from your GP when you need it. Good luck.

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