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!)