Doug Paulley's blog

disability, data protection, activism and other such

On the nature of party balloons and catheters

Posted on by Doug Paulley

When you deflate a balloon it never goes back to its original shape.

party-balloons-background_zps727ce43f copy

This isn’t usually a problem. But it is in this context.

cathetersThose are silicone Foley catheters, if you are wondering. I’ve got a hole through my abdomen into my bladder, into which the above gets pushed (with medical lubrication) and is held in place by inflating the balloon. This is the mechanism by which I pass water – a suprapubic catheter. The other end gets attached to a leg bag, which is a urine collection device; an external, plastic bladder if you will.

441(This gives the general idea. I recommend against Googling for photos, as many are a bit graphic. Oh. My. God.)

The catheter goes through a sinus, that is a skin tube through my layers of blubber and into my bladder. It’s a few centimetres long and it forms itself size-wise to the catheter. It has healed completely, a bit like a body piercing, as it were.

This is all fine and dandy except that every so often the catheter needs changing; over ten weeks or so the balloon goes down a bit, the catheter gets a bit mucky and coated and the silicon in the catheter starts to go funny. So the balloon is deflated, in theory reducing the tube to its original shape so it can be pulled out the same way it went in.

In. Theory.

Those blooming wrinkles. They are a right blooming pain. No matter how slowly you go, how careful you are, getting those wrinkles through the hole in the bladder wall, and through that skin tunnel, always knacks. The tunnel just isn’t made for that..

I usually try to do it with ibuprofen and cocodamol, and with the aid of some local anaesthetic in the lubricant. It’s still horrific though. Last night I tried getting drunk. That helped a lot! – a great painkiller, it made sure the new tube was well flushed, and I can barely remember it.

But there has to be a better solution, doesn’t there? Surely it isn’t beyond the ability of material science to create a catheter in which the balloon completely deflates back to where it was? I know there are lots of other things to consider as well – resistant to infections etc. – but even so.

Oh, whilst you’re at it, catheter manufacturers, how’s about supplying leg urine bags WITHOUT leaving the tap open, and WITH the end pushed on properly? (I think they must want to give unsuspecting people smelly wet sock syndrome.)

Yeah, thank you for that Conveen, I'm sure it's very funny to give inattentive people urine-ensoaked socks and trousers...
Yeah, thank you for that Coloplast, I’m sure it’s very funny to give inattentive people urine-soaked socks and trousers…

Proof of email server receipt = proof of receipt of FOI request

Posted on by Doug Paulley

The ICO has decided in decision notice FS50559082 (yet to appear on the ICO’s website, so for now check the annotation on WhatDoTheyKnow) that server logs indicating receipt by a public authority’s email server constitute persuasive proof that the authority received the request.

12. The Commissioner notes that there is evidence to show that around the period the request was made the Cabinet Office was having difficulty receiving emails from the Whatdotheyknow site. However, the Commissioner was given confirmation from the Whatdotheyknow website that the request in this instance was received by the Cabinet Office’s email servers.

13. The Commissioner considers that there is sufficient evidence to show that the Cabinet Office had received the request on the date it was sent by the complainant.

In this case, the Cabinet Office’s email MX server in receipt of the email i by Symmantec’s “Message Labs” cloud-based email security platform. It is possible that the request was lost in Symmantec’s system and not the Cabinet Office (perhaps falsely classed as spam.)

WhatDoTheyKnow always keep email server logs (barring any exceptional technical problems) and so administrators are always able to prove the authority’s receipt of the request. (We have suggested that this information should be directly available to our users.) Similarly, my website hosts (Penguin UK) keep email server logs for a limited period and customers can get a copy of the log entry in question. I should imagine that other hosts using CPanel should offer the same facility.

When making FOI requests by email (or perhaps even when making subject access requests), requesters may wish to get and keep a copy of the mail server log proving the body’s receipt of the request – particularly where the body doesn’t issue automatic acknowledgements of such emails and/or has a …. patchy record of compliance with the Act, like the Cabinet Office.

H/t JT Oakley / @jatroa for pursuing this issue.

 

Clare Pelham, Leonard Cheshire’s CEO, doesn’t support legal action for disabled peoples’ rights

Posted on by Doug Paulley
cartoon by Crippen
And when we want your opinion, we’ll tell you what it is!

Clare Pelham, Leonard Cheshire’s Chief Executive Officer, was interviewed by Peter White today on Radio 4 “You and Yours” about disabled peoples’ difficulties in accessing buses. This is because their survey of 179 wheelchair users found “over nine out of ten (92%) wheelchair users had been refused a space on a bus” and “three in five (61%) people identified buggies in the wheelchair space as the biggest problem they faced. This was way ahead of other problems faced by those using wheelchairs“.

Peter White asked her specifically if she thought that the Paulley vs Firstbus case would find in my favour at Supreme Court.

Peter White: “So this case, that is still going to the Supreme Court, are you expecting that to be restored? Mr Paulley‘s right to get on the bus?”

Clare Pelham: “I don’t think I would even presume to guess what Supreme Court judges would find. But actually, I think this shouldn’t be a case for the law. This should be a case for the people, the people to do what’s right, whether they are bus drivers or passengers, we all want to have public transport that enables all of the public to travel.”

That obviously works well, doesn’t it. People with pushchairs, other passengers, drivers, they all know and understand that if the wheelchair space isn’t made available, a wheelchair user can’t travel. Yet by her own figures, 61% of wheelchair users identify buggies in the wheelchair space as the biggest problem they face. Just how does she think the few people with pushchairs, other passengers and drivers who currently prevent wheelchair users traveling are suddenly going to realise the error of their ways? How, precisely, is she going to instill this magnanimity into the British populace? Through simpering on Radio 4?

Leonard Cheshire try to claim to be the voice of disabled people, a campaigning force to be reckoned with. That’s why they spend £735,000 per year on “campaigning”, and why they have posh offices in Vauxhaul – ostensibly so they can toddle round the corner to lobby Parliament. (They grew too big for their previous offices in Millbank.) Yet they don’t have any legitimacy. They don’t have a constituency, and politically active disabled people despise them. They also don’t walk the walk for the talk they talk, as demonstrated by Northumbria University’s research – an apposite quote below.

“One of the problems it (user involvement) causes is when residents become more empowered and aware of the opportunities of life they’re likely to ask for more. In asking for more, it usually involves staff, and resources are already very scarce and limited, and centred mainly in providing basic daily care in washing, dressing, eating and they occupy an awful lot of time. Empowerment creates problems of staff support. And if the choice of empowerment involves travel then that’s a further added burden. Not necessarily to pay the cost of travelling but to have the opportunity with limited transport or escort.” – A resident in a Leonard Cheshire care home.

Yet even Leonard Cheshire recognise that the Firstbus case is an important fight. Andy Cole (Minister for Administrative Aff – sorry, Director of Corporate Affairs) told BBC News that Leonard Cheshire was disappointed with the Appeal Court judgement as it did not provide “clarity and certainty for disabled bus passengers that the space they need will definitely be made available“, and further that if the case moved to the Supreme Court he hoped any judgement would provide that certainty. (He even gave me a back-handed compliment; “The case shows the immense impact that individual campaigners can have“).

One wonders what planet Clare Pelham is on. Out of touch with service users, disabled people, her own care-workers and even her own campaign team (or at least her Ashley Maddison rep – sorry, “Director of Corporate Affairs”.)

Non-disabled and on £150,000 per year plus private medical treatment and other benefits – surely Clare Pelham should shut up or carry on her disempowering self-serving greasy-pole-climbing elsewhere?

With thanks as ever to the wonderful Dave Lupton / Crippen for his excellent cartoon.