Yes, This Hurts!

Some of you will already know that I’m losing my motability car on the 23rd of April. I’m incredibly angry as this effectively leaves me housebound. So I’m having to spend money I can’t spare on buying an ‘old banger’ so I can get out.

So why is this happening?

  • Because this govt don’t want people on disability benefits
  • Because in conjunction with the MSM they have wrongly demonised disabled claimants as scroungers
  • Because they’ve moved the eligibility goalposts to make it even harder to evidence disability
  • Because their contracted “health assessors” (who aren’t experts in many conditions including mental health issues) are targeted on reducing benefit levels
  • Because their contracted assessors blatantly lie, misinterpret & make erroneous assumptions in their reports which are then treated as gospel over claimant evidence, scans, & consultant correspondence
  • Because they f*cking can & the MSM is complicit in covering up their lies

I know I’m not alone in this, I know other people who’ve been through this right to the appeal tribunal stage & won back their rightful benefits because at a tribunal you’re dealing with humans, not dwp targets. But I also know so many are just too ill, too tired, too anxious, too stressed, too alone, too defeated & too confused, and have given up without appealing even though they know they’d likely win. The fight is too hard & this govt are relying on that to cull numbers.

Almost a third of DLA to PIP claimants lose benefits, cutting their independence & their income. Disability charity Scope said these figures are “deeply concerning” and called for an “urgent overhaul” of the assessment process

“It’s deeply concerning that so many disabled people are facing a sudden drop in vital financial support,” said James Taylor from Scope.

“Life costs more if you are disabled. These extra costs haven’t disappeared just because there is a different assessment process.

“Without an urgent overhaul of the PIP assessment process, the system will continue to work against disabled people, instead of for them.”

I won’t go into my medical details here because much of it is very personal, but I cannot emphasise the following things enough;

The stress & anxiety have been absolutely horrendous. Imagine some unknown & unsympathetic stranger has complete control over your finances & your car, then imagine they won’t tell you for month after month what they’re doing next. I had my initial dwp letter in June last year. My assessment wasn’t until 1st December. I didn’t get a decision until February (and I had to chase them).

So I completed with Citizens Advice the initial Mandatory Appeal (which is known to be a pointless exercise but still took us two hours), unsurprisingly I’ve had a letter today denying the HR disability again & repeating what was said in the last letter almost verbatim. So next stage is to go to court for a legal Appeal Tribunal, which I understand from others can take up to a year.

My depression has absolutely been impacted by this process too, I’ve had more down days, the black dog nips a little closer when even thinking about not having reliable transport, & also of being accused of being a liar which is essentially what the dwp have done to me & thousands of other disabled people. I’ve been agitated & restless & I know exactly what the cause is.

My rage has settled down to a simmer now, but I was so bloody angry when I finally got my report copy. (Confession – I may have written certain rude words in pencil all over the margins). It’s outrageously poor.

Bear in mind here for a minute that in a previous life I ran huge contracts across the South West for (plot twist) the dwp, supporting the unemployed into work. The irony isn’t lost on me! But had any single member of staff in one of my centres turned in a report of this poor a calibre about a client some very serious conversations would have been had.

I’ve not picked it up for a few weeks because it’s still a bit raw, but off the top of of my head…. It’s a badly written cut & paste job, some of which obviously came from doing someone else’s assessment. It’s practically illiterate. The same phrases are repeated over & over like magic, as if when you say something stupid/untrue often enough it becomes reasonable or true. It contains as I said earlier outright lies, glaring inaccuracies and erroneous assumptions. There is no logic or consistency.

It took me a few days to work out that at least part of my anger was precisely because of the poor composition and lack of attention to the construct and meaning, as well as the errors. I know I’m a detail orientated person and these things matter to me, but surely in doing work that will actually impact people’s lives, wellbeing & financial circumstances everyone should pay attention to detail?

Almost a third of DLA to PIP claimants have lost benefits, cutting their independence & their income. Disability charity Scope said the figures are “deeply concerning” and called for an “urgent overhaul” of the assessment process.

“It’s deeply concerning that so many disabled people are facing a sudden drop in vital financial support,” said James Taylor from Scope.

“Life costs more if you are disabled. These extra costs haven’t disappeared just because there is a different assessment process.

“Without an urgent overhaul of the PIP assessment process, the system will continue to work against disabled people, instead of for them.”

Call me naive, but I guess I expected better from a government employed organisation when producing an official report on someone’s mental & physical health & ability. So yes, on top of everything else I was actually incredibly disappointed.

In my previous life with a fully functioning brain I would have torn this report to shreds in a couple of hours, referring to the DWP’s own guidance point by point to emphasise each and every error. Unfortunately with frequent brain fog, cognitive difficulties & fatigue unpicking this to refute it for a tribunal will take me weeks. But if needs be I will do so, with the support of friends, and the fabulous Citizens Advice, because even feeling as ill as I do daily I’m too bloody angry & stubborn to let this go.

I hope the above has made sense, I’ve probably rambled but this is the first time I’ve felt calm enough to write this out without ranting &/or swearing (a lot)!

Thanks to everyone who’s supported me, especially the lovely Essia who attended with me in December to literally & metaphorically hold my hand.

Quotes pictured above are from the incredibly useful Disabity Rights website which can be found here if you’re looking for further information

Always trust your gut…

I’ve tweeted & shared quite a bit about my recent hospital cock up experience, but as it’s ongoing & probably relevant to a number of us living #chroniclife I decided to try and lay the whole saga out in one. Here goes!

Brief history – I started having back pain about two months after my RA diagnosis, having never had an issue before – so to those who think RA doesn’t affect the spine I say nonsense – I’ve heard too much anecdotal evidence that says otherwise. Plus my original orthopaedic consultant said “of course it can”.

Investigations showed one herniated disc, another dessicated. I was told this was the probable (!) cause of the mechanical pain but nothing much can be done. Despite the fact that this back pain is the main reason I can’t walk without crutches, or on some days at all. To be fair we have tried Facet Joint injections and a Caudal Epidural without success – I’m annoyingly resistant to steroid treatment.

Anyways about two years ago the sciatica started. It has never let up. Obviously it waxes & wanes but that literal pain in the butt, along with pins & needles and numbness in the foot is a constant companion in everything I do, particularly standing or sitting. It started getting bad enough last year that my GP referred me into the musculoskeletal assessment team, who referred me to my current consultant.

After meeting in March we decided to go ahead with an L5/S1 Nerve Block – essentially injecting local anaesthetic plus corticosteroids into the sciatic nerve root in my spine. We discussed at the time my slightly higher risk of complications including paralysis because of my anticoagulant therapy. I liked him a lot because he was frank and open and simply told it how it was – a rare trait in consultants in my experience.

Prior to receiving the actual appointment I had a telephone pre-assessment call from the hospital. I quite clearly remember her saying during that call that “you’ll need to stop your Rivaroxiban for two days prior, the consultant has noted five days but that’s not necessary”. So, as told, I stopped my med two days prior.

The process is that everyone on that day’s list arrives at 7.30am and waits. This is an added nuisance as you cannot drive yourself, necessitating calling in favours from friends. But I arrive on time, and wait with everyone else (while becoming slightly paranoid about people sniffing & coughing their germs around).

I get called through by a nurse into a cubicle for pre-op checks, blood pressure, sats etc. She’s very busy and has to leave for a while, and while waiting I can clearly hear other patients being asked about any previous history of DVT’s. I get sent back to the waiting room, then brought back to another cubicle to see my surgeon, let him scribble on my back and sign consent.

At this point I change into the ever glamorous hospital gown and wait. Niggling in the back of my mind is that no one has checked on my anticoagulant meds or asked me about DVT history, it just doesn’t feel right. So when the anaesthetist comes to take me down to surgery I ask if she could please check that all was OK with me stopping my med two days before?

I am so glad I did – always trust your gut!!

The answer was a big fat no. It should have been five days not two. This would have been picked up if the lovely but very busy nurse hadn’t missed the DVT question off the checklist. The booking office should never have contradicted the consultants instructions. Comedy of errors indeed.

Within minutes I had nurses apologies, booking office apologies, anaesthetist apologies. I think they were all worried I was going to be angry or upset or both. What I actually did was stick in my headphones & listen to a short meditation from the fabulous Calm app – my initial anger response drifted away and I found my peace. So much better for me, as well as others. Anger is simply not helpful.

My consultant came back to explain exactly why he couldn’t go ahead – two days would be fine for, say, a knee operation – if I bled it would be from the wound. But had I bled from the point of the injection into my spinal column there would be nowhere for the blood to go, a pressure bubble of blood would press on the nerves and I could have been paralysed from the waist down by the next morning. Obviously not ideal! He was not a happy bunny, and he thanked me for having raised the question.

So, he arranged a new appt with me there and then for two weeks later, and duly cancelled, I went home.

On the following Friday he rang to ask if I’d heard anything from the booking team, I said no. He advised me again five days off my med, and explained that although this was a nuisance for me personally it had highlighted some issues with pre-assessment checks for patients on anticoagulant therapy so it had been a good exercise for the hospital as new procedures were being clarified across departments. I almost felt important 😉

This morning (Monday) he called again, wanting to check on my DVT history to decide if interim therapy such as fragmin would be needed, and told me that the anaesthetist would call me later to advise. I kinda guessed by 5pm I wasn’t going to hear from them – annoying.

However at half six this evening he rang me, apologising that no one had called me back, explaining he was calling himself as he hated it when that happened. He’d been in discussions with the haematology dept and they had decided no interim therapy was needed, so keep not taking the meds & he’d see me on Friday morning.

If I didn’t already like & trust this doc I would now. He’s obviously got his patients best interest at the core of what he does and that speaks volumes to me about him as a surgeon. I have absolutely no hesitation about placing myself in his surgical hands on Friday, despite the earlier errors by others, because he has been honest and professional with me throughout.

And you know what? The cancellation was a pain, but if it means both myself and future patients will be safer then it was absolutely worth it! Sometimes stuff happens for a reason 🙏

Update – 8th June

I’m sitting post surgery on the ward, all done. F*ck me that hurt, don’t let anyone tell you otherwise! But – they’re confident it went well, so I’m waiting to be assessed for discharge in about half an hour depending on the feeling being back fully in my leg, which currently feels kind of heavy & a little unresponsive – I’ve been assured this is perfectly normal!

Now it’s just fingers metaphorically crossed that this actually works and stops the sciatica. Review in six weeks. 💙