Saturday, 31 March 2018

a lovely time was had by all

We left Philadelphia and HUconnexion18 on Tuesday afternoon, landed in the UK on Wednesday morning and I've been trying to make sense of my notes ever since.

Despite an almost hallucinatory level of exhaustion and displacement, we had a fantastic time. We met some amazing and inspiring people and made a number of new friends along the way, both Health Union staff and fellow patient advocate contributors.

I'm still trying to unpack all my thoughts and the lessons we learned. There will likely be a number of disparate blogposts about our three nights in Philadelphia - about the logistics of travelling with a wheelchair, about owning our own stories of chronic illness as opposed to being doomed to endlessly repeat the story of our diagnosis, and about the value of community and the validation that comes the first time somebody just gets it.

On an entirely personal level, the fact that we were able to travel so far on our own is a massively big deal.

If you had told us last summer, when I was up to my ears in relapse, that 9-10 months later we would be travelling over 3,000 miles to attend a conference, we would've laughed in your face. But now we know we can do anything we set our minds to.
my new besties - spot the British teeth!

Monday, 5 March 2018

how do you think it feels

This morning I got a bumper fun pack from my friends at the DWP. This contained:
  • Copies of both of my PIP applications
  • Notes from both of my assessments
  • The DWP's notes on the applications, including the rationale for turning me down in each instance
  • Their responses to both of my requests for a Mandatory Reconsideration
All topped off with the following charmingly abrupt statement:
I've considered all the available evidence and considered which descriptors apply for each activity... I agree with all the descriptors selected.

I oppose the appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
It was not a great start to the day.

Every time I get one of these - and since January 2017 there have been a few - I immediately go into a mood of equal parts rage and despair.
"I don’t know if I can keep doing this any longer"
I can't help thinking that this is exactly the response they're counting on.

I end up ranting to whoever is closest to hand (apologies to the divine Mrs D), then firing off messages to my Dad or on Twitter [FULL DISCLOSURE: it's usually always both].

Then I take a deep breath, look through it all again, listen to the thoughts of the people around me, and think:
"There's no f**king way I'm giving up on this now"
I wish they'd let me stop! I'm not trying to bilk the system and I can think of a million things that I'd much rather be doing.

But if that's the way it has to be... 

Friday, 23 February 2018

a philadelphia story

"who let the miserable limeys in?"
Next month I'll be attending HU Connexion 2018, a health advocate conference in Philadelphia. This has been organised by Health Union, the people who run the Multiple Sclerosis website I write for occasionally.

To be honest I haven't written for the site for a while so I ignored their first few emails about the conference. Plus it's in America. Which is, like, a long way over there.

But the site administrators got in touch a couple of weeks ago and asked if I could write something about being a father with MS. After writing the article (first objective: make Mrs D cry; result: success) I mentioned the conference in an off-hand, "wouldn't it be nice" kind-of way. And everyone I told about it said I had to go for it.

By this point we'd missed the RSVP date but thought it was worth a punt.

And we found that not only had they extended the date but they would be delighted to have us there. So they're paying a good chunk of our travel costs, feeding us and putting us up for two nights at a pretty nice looking hotel in Philadelphia.

It's not somewhere we've ever thought of going but it looks a really cool city with a lot of history. And it's not every day someone offers to pay a good whack of your travel to attend a really interesting looking conference.

I just hope that the positivity of these advocates won't put people in the UK (myself VERY MUCH included) to shame with our constant griping and competitive disability point-scoring.

HUGE thanks to the team at Health Union who responded (really quickly) to all of our requests. You really helped us out and we can't wait to meet you!

And massive thanks to our American correspondent Ms. CrankyPants for giving me a bit of local knowledge and letting me know that (apparently) the Philadelphia 49ers have recently won the Super Ball FA Cup final.

Good to know, I certainly don't want to look stupid, do I?

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!)