Tuesday, 13 February 2018

the father of a PIP applicant speaks

When I'm writing this blog it's a very self-centered thing,  a way for me to sort out all the thoughts in my head and log my experiences and problems. If we're lucky then we'll have people around us who are also going through these tribulations alongside us.

A few weeks ago my Dad said that he had something he wanted to write. Here it is. 


History Repeating Itself or What Goes Around Comes Around?

My wife says nobody will wade through the potted history bit to get to the point I'm trying to make, I hope she's wrong! Here goes...

Before World War Two Germany was in dire financial straits. The powers-that-be decided they needed a scapegoat and decided on the Jews and all others they deemed a burden on the economy and society. During the war these same people came up with "The Final Solution" and subsequently handed the implementation of this policy to the SS.

With ice-cold logic the SS realised they could achieve their objectives more efficiently by utilising some of the inmates to organise the low level day-to-day running of their concentration camps. These inmates, known as Kapos, were often more brutal than the SS in the treatment of their fellow inmates. They were rewarded for their efforts with better food, accommodation and the removal of the fear of torture and death.

As the war progressed it became apparent, to the people at the top, things were not going to end well. Many started to distance themselves from the "The Final Solution", claiming it was not what they had intended and denying all knowledge of the death camps. The SS, realising they were in the frame for blame, again utilised their ice-cold logic. They came up with the now infamous mantra, "We were only obeying orders".

Well, that's all right then!

At the closing of the camps the Kapos gathered together expecting to be rewarded with freedom and congratulated on a job well done.

Consequently, their masters executed them. The SS regarded them with even more contempt than the other prisoners.

So much for old history.

Fast forward to the beginning of the 21st century. With the global financial crisis, the UK finds itself in dire financial straits. Austerity becomes the buzzword and the powers-that-be need scapegoats. I know what we can do! We'll use the same old reliable fall guys. Lets blame all our woes on the immigrants and the "liabilities" who depend on our inflated welfare budget.

Who are least able to defend themselves and least likely to kick up a stink if we attack them? You've got it! The people on welfare and the sick on disability allowance.

We have a solution. We'll get rid of Disability Living Allowance (DLA) and replace it with a policy that is so difficult to qualify for, that many claimants will just give up when faced with its complexity. Some may even die before they get a result. We’ll rebrand it to placate the general population and we’ll call it Personal Independence Payment (PIP). Makes it sound like we are actually helping people.

RESULT!

The DWP can implement this new policy. They have the organisation to carry it out. With their faceless upper echelon, all they have to do is gather the data and make judgements from on high. No need to meet the claimants. No need for empathy. No need for sympathy. That’s pretty cool logic if you ask me.

How are we going to get all the data from the claimants? Easy. We’ll "out source" it (another new buzz word. It means palm it off) to organisations like ATOS. They can train people in 6 weeks, who are ten deemed qualified to make judgements and write reports on people they've met only once. It won't matter what kind of disability they have, or what their personal circumstances are. We have a one-size-fits-all qualifying criteria.

Anyway, ATOS are incentivised. The more claimants that fail to qualify for PIP, the better ATOS will be regarded and rewarded.

We are present day now.
PIP is failing, as indicated in the news recently that all claimants dismissed with mental health issues must now be reassessed. The original instigators of PIP are wringing their hands claiming it was not implemented as they intended and recriminations are in the offing.

The DWP will not doubt say they were only following instructions when some of their judgements are reexamined.

As for organisations like ATOS, no, they won't be taken out and shot. However, for the many times they have misinterpreted and misrepresented the claimants they have interviewed they should hang their heads in shame.

I'm not saying the government are Nazis, or the DWP are as ruthless as the SS, or that ATOS are as craven as the Kapos. But the similarities in the modus operandi are frighteningly similar

Just for the record this is not the ranting of some raving Corbinista. Just a political middle of the road father who has no truck with extremists of any persuasion.

I'm just in the unfortunate position of watching my once confident and proud son become embroiled in a vindictive and unforgiving system that is denying him financial assistance that he never envisaged needing. This policy is destroying, both mentally and physically, the most venerable and need-worthy in or society.

I am not so naive as to expect life to be fair. Or to think nice things always happen to nice people in the end. Or even that justice and right will always prevail.

But one thing history has shown is that eventually, for all injustices committed, someone has always been found accountable and the truth eventually comes out.

Friday, 9 February 2018

tempting fate

Plot Spoiler Warning! This blog discusses a recent episode of Inside No. 9
image from "Tempting Fate" from Inside No, 9
As anyone with even a passing knowledge of this blog will know I have long been a fan of the work of The League of Gentlemen. Two of The League - Reece Shearsmith and Steve Pemberton - have in recent years created a series called Inside No. 9, which to my mind is even better than their first TV show.

In a lot of ways it's kind of like a more horrific version of Tales of the Unexpected - a lot of the shows have unexpected twists in them but there is also still a lot of their trademark dark comedy.

On a number of occasions the twist at the end of an episode has reduced me to tears - the classic episode 12 Days of Christine and the more recent Bernie Clifton's Dressing Room being amongst the shows that immediately spring to mind. When they avoid relying on shock twist endings, they can create some incredibly moving mini-plays.

Maybe it's to be expected when each episode is a self-contained half-hour playlet but unfortunately they don’t always hit the mark.

The last episode of the current series, Tempting Fate, particularly stuck in my craw. This told a story of three council contractors as they attempted to clear the flat of a dead hoarder. At one point it was revealed that one of the characters - played by Steve Pemberton - had a tragic home life, having a young, wheelchair-bound son (Charlie) with MS. This was introduced in a particularly clunky manner, with the youngest council worker mistaking it for M&S - har de har har.

Eventually a large amount of money is found in the flat, with an inevitable confrontation about who should have it. In the struggle Steve Pemberton's character says that the money is a godsend as it would "pay for Charlie's operation".

Which made me and Mrs D shout out, "WHAT OPERATION?!"

The whole thing just ended up making MS the laziest of all plot devices. It was as though they just grabbed a medical condition off the shelf and didn't look into it any further - "Oh, MS will do. It's all basically to do with wheelchairs, isn't it?"

It was so disappointing! A feeling only added to when Charlie appeared towards the end, saying "Look daddy, I can walk!"

I know that Inside No 9 didn’t set out to make a definitive portrayal of MS and I might not have noticed (or been so sensitive about it) had I not had a vested interest.

I guess it's like the worst thing your parents can ever say to you - "I'm not mad with you, just disappointed".

But a previous episode (Series 3's Empty Orchestra) featured a deaf character (and performer) who wasn't simply viewed as someone tragic to be pitied. In fact, in the final scenes of Empty Orchestra, she ended up putting her bullies in their places and even bagging her (hearing) man.

I just think it would just be nice if they could handle potentially sensitive plot and character devices with that level of thought.

Wednesday, 24 January 2018

unexpected mail

don't know about Posy but PIP is obviously the scariest monster
Always such a delight to receive something totally unexpected through the mail.

But with a wearying sense of the utterly predictable I got something entirely expected from the Department for Work and Pensions earlier today,

Yes, they've turned down my application for PIP again - almost a year to the day since I submitted my first application for this benefit.

In the last couple of hours I've gone from resigned to enraged to depressed. I'm now at the next stage - utterly determined to take this to the next level and a tribunal. So this is what we'll be setting in motion starting tomorrow.

The MS Society has recently been surveying people with MS about their experiences with PIP - if somehow you've missed it (I've received the link through a number of different sources), I'd ask you to take a look at this short survey. It takes about 20 minutes to fill in.

As you can tell by the following extended answers from my submission, I gave them both barrels - and this was even before this morning's letter!
I lost my previous job in December 2016. At that point I had to apply to move over from DLA to PIP. I submitted my application in January 2017 and was assessed in July (shortly after having two significant relapses). Despite this I was turned down, even after a Mandatory Reconsideration.

In September I reapplied so that additional factors which had come in between the two applications could be considered - adaptations around the home, increased use of a wheelchair, change of medication, CBT therapy for depression/suicidal thoughts, Physiotherapy, Intermittent self-catheterisation.I was turned down after my second assessment in October and am currently awaiting the result of a further Mandatory Reconsideration.

The financial strain that this has put on myself and my family has been considerable. If this second appeal fails we will be forced to go to a tribunal, meaning additional - in our eyes, unnecessary - stress, upheaval and uncertainty.

PIP as a process is completely at odds with a condition like MS, and the notes which came back following my two assessments bore no relation to the topics discussed – for example, how can someone state that I can walk between 50 and 200m when during the appointment I was unable to raise myself up from my wheelchair?

Filling out the forms involves exposing incredibly personal and humiliating aspects of our lives. To then have someone judge you and effectively accuse you of lying is utterly demoralising. Although I was lucky enough to have both assessments in my own home, this also meant that there was someone who came into my house and judged me without either an ounce of empathy or a care for the affect their decision would have on me and my family. I also question how much they knew about a condition like MS.

The strain on me and my wife has seen us at breaking point for most of the last 13 months – and although our daughter is only 6, this uncertainty will doubtless affect her too.

Nobody wants to feel that they are useless, and people with a fluctuating condition such as MS are used to talking in terms of "worst days" – this might have been accepted for DLA but with PIP this is viewed with palpable suspicion.

Filling out the form is confusing, depressing and demoralising, as is being submitted to the assessment. It is only through the support of close family and friends that we have survived so far – I can't imagine how more vulnerable people can cope but I know that often they don’t.

Friday, 19 January 2018

top tips for a happy tysabri infusion

If you begin regular Tysabri infusions you'll get a load of bumf with handy tips to help you have a happy infusion. These include relaxing, drinking lots of fluids and eating snacks. Standard.

Here are a couple they missed, based on my experiences.  

1 - Alcohol gel, alcohol gel, alcohol gel
For some reason, it took until my fourth infusion in December for the nurses to tell me that the pain of removing the cannula, related surgical tape and arm hair can be completely avoided if the affected area is totally slathered in alcohol gel, of which they have fecking loads.

FYI: on a chart measuring levels-of-hirsutitude I would be somewhere between an ape and a regular adult human male. I'm not so hairy (or hairless) that people might remark on it. Although Little Miss D will sometimes sit and stroke my arm as if it's a pet dog.

Previous to discovering this modern wonder I had reacted to the discomfort with levels of leg-kicking and whispered obscenities which had been frankly embarrassing for all involved. Now, there are no problems.  

Alcohol gel. Ask for it by name. This blog is nothing if not a public service source of useful information. You're more than welcome.  

2 - Speed up your saline washout
The Tysabri infusion takes around an hour, followed by an intravenous saline washout which also takes around an hour.

(It should be noted that, when first starting this treatment, you can also be asked to hang about for around a further hour to be monitored for adverse reactions. So all in, three hours) 

After a couple of months I'd been able to shave a bit off this - having no adverse reactions to observe and by asking for the washout to be sped up. This has now got to the point where yesterday, when I asked the nurse if she could get it to go a bit quicker, she said, "Six minutes?" I could have kissed her.

I know the nurses wouldn't do this if there was any danger to patients and I'm lucky to be getting on with Tysabri so far. Also, the ward is packed every month and they do need to get people treated and out of chairs as soon as possible.

Maybe they just think I'm an annoying sod and just want rid of me? No worries. I'm out of there!  

3 - Make sure your headphones are plugged in
Self-explanatory really. When I was getting set up for my infusion, I put in my headphones and started up the music on my phone. Thought it sounded weird and tinny so I cranked it up. Then realised nothing was plugged in. Yes, I was THAT GUY who is confused by technology.

--

As part of the monitoring of Tysabri patients, alongside regular blood tests we need to bring urine samples to each infusion. I always take mine with me but two women in the clinic yesterday had been unable to get one in their own homes and were chugging back coffee and water to achieve the desired result. And they were still struggling to provide it.

The nurses aren't able to proceed with the treatment until they've been able to check patients' urine so it was getting a big fraught (although as you can tell we were all able to discuss this between us all quite merrily and shamelessly).

Both were able to eventually start their treatment but one of them - in a horribly predictable manner - then had to go to the toilet three times in quick succession after being plugged in for her infusion.

If it hadn't been incredibly inappropriate (and very much none of my business) I'd have been tempted to talk to her about my experiences of self-catheterisation. I've been doing it for over a year now and - although it's no-one's idea of a good time (if you disagree, please don't comment. No judgement, each to their own, I just don't need to know) - it is amazing how much more freedom I have in leaving the house. Maybe not at exactly the time that I need to, admittedly, but very much in the correct general ballpark and with considerably less disruption.

For goodness sake, as well making it through my appointment uninterrupted, I even watched the whole of The Last Jedi without going to the toilet once. And that film is LONG and *whispers* a bit dull...

This was the biggest hit from my last infusion (with apologies for the headphone mix up!)

Thursday, 21 December 2017

sit down, be humble

We're lucky enough to live down the road from some great heritage locations. So ever since Little Ms D was born we've always taken her to see the Chatsworth Christmas decorations.

We should've gone yesterday, with my Mum and Mother in Law, but my legs weren't playing ball. I was really pissed off and my frustrations manifested themselves in a display of olympic-standard  ARSEHOLISM, primarily directed at my Dad. I'm not proud of it.

Thankfully he ended up taking Mrs D, The Child and the Mums so at least they didn't have to miss out but I ended up feeling down on myself for the rest of the day. I've not been my best recently - a combination of my recent job disappointment added to Christmas stress and the inevitable feeling that I'm bound to get another PIP knock back from the DWP in the post just before Christmas.

I started writing this on my phone while Tysabri infusion number four was being pumped into my vein. It was bloody chaos in the hospital today. Lots of people dealing with worse situations than mine, it's pretty humbling and puts yesterday's mardiness into some kind of perspective. It shouldn't take that to give me some clarity but there we are.

One thing that has been confirmed today is a sneaking suspicion I've had, that the effect of Tysabri "wears off" - prompted by my dodgy day yesterday and vague things that I've noticed previously. I felt pretty daft when I asked the nurse about it earlier, convinced it was all psychosomatic. But apparently a number of people come in for their treatment saying they're ready for it.

Now we might all be guilty of reading too much in to stuff but maybe yesterday's issues were understandable. I must remember not to arrange anything for the day before my infusions in the future!

And also to be less of a mardy bum hole.

I can't imagine I'll have chance to write much more here over the festive period so thanks for reading the blog this year. It has personally been helpful to get all this stuff out of my head but I really didn't intend for 2017 to be so interesting!

Here's to a much less traumatic time in 2018 for us all (health wise).


The bass on this track (one of my favourites of the year) took me well and truly by surprise when it popped up during today's infusion.

Friday, 15 December 2017

which way now


With wearying predictability I didn't get that job.

I'm disappointed but in a way not that surprised. The jobs I've gone for recently have all been Arts Marketing jobs and my entire work experience has been in this area.

Truth be told I kind of fell into this sort of work when I left university - after applying for a handful of jobs, a local theatre was the only place to get in touch, offering me a work experience placement. Since then I've worked my way through the ranks to end up... in the job which I was forced out of this time last year.

I'm ok but wondering what's going to happen next. I'm not fishing but I genuinely think there's a strong possibility I've been bluffing all these years!

I think I need to take stock and maybe look at working in a different area. Little Ms D has offered me a job telling stories but we haven't discussed terms yet.

Offer the last year a handful of people have told me I should write something. I know the cliche is that everyone has a book inside them. But I struggle having something to tweet about most days - and that's even at the old 140-character rate, let alone the enhanced War-and-Peace 280-character behemoth.

Ah well. Pick yrself up again, Steve.
maybe I should've studied this book a bit closer?

Thursday, 14 December 2017

i can hear music

At my last session my therapist gave me one task which I've been throwing myself into with some gusto.

She told me that I needed to listen to more music. I know, what a slavedriver. But I am nothing if not a good student.

One of my favourite bands has always been They Might Be Giants, who often get tarred with the wacky brush. However, they suffer from the opposite problem to The Smiths, who are mostly hilarious but who people assume are miserable. Conversely, TMBG write quirky, funny songs that have a sheen of cleverness and fun but frequently touch on dark issues such as death, depression and social anxiety.

One of my favourite songs of theirs is called - bluntly - Dead. Call me a simpleton, but I’ve always just read the lyrics as being an original look at the concept of death and reincarnation
I came back as a bag of groceries
as well as fears about the legacy we leave behind
Did a large procession wave their torches as my head fell in the basket?
And was everybody dancing on the casket?
as well as daft regrets and the wrongs we never corrected
I will never say the word "procrastinate" again
I'll nevers see myself in the mirror with my eyes closed
I didn't apologise
For when I was eight and I made my younger
Brother have to be my personal slave
So far so clever (but since when did we see cleverness and expertise as a bad thing?).

But the day after I got my second PIP refusal letter I spent a lot of time playing TMBG songs. I was in a bad way and quite frankly just about ready to give up. And in my heightened state I realised that this song is actually about depression:
Now it's over, I'm dead, and I haven't done anything that I want
Or, I'm still alive and there's nothing I want to do
It seems so bleeding obvious now but a quick look at the TMBG wiki shows that not one person has tagged it with depression or pulled out that theme.

But that line ("I'm still alive and there's nothing I want to do") summed up how hopeless and pointless it felt that day. And weirdly made me feel better.

But it’s not all highfalutin concepts and heavyweight lyrical concerns. Sometimes pop smarts just come at you out of left field and you find yourself playing the same song over and over again.

A quick reccy of YouTube plays and recent Last.FM stats shows that I’ve played this song by Alvvays around 12 times within the last couple of days.

I know nothing about them, they're not doing anything remotely original. It's a song about love gone bad through thoughtlessness or laziness, and musically it’s treading some well worn paths.

All I know is, the way she slurs downwards on the word "psychology" at 1.28 (on the video above) makes my heart go all squiffy.

That one moment makes my day every time I play it, in a way that hasn't happened since the off-beat ride cymbal which kicks in at the end of Uptown Funk (from 3.54). Yes the song is the very definition of ubiquitous but by god that's a Grade A piece of pop arrangement.

So what has all of this navel-gazing got to do with anything?

Yesterday I went for another bloody job interview. I’m waiting for feedback and clinging to the fact that one of the people who interviewed me isn't at work today. But being realistic it's not looking good is it?

However, at the very least this will be (surely?) the last job interview I have this year. So that's something, right?

Play it again, Stevey.