Another yellow card

Just sent in our second 'yellow card' in a week for substandard/failing medical devices.

Another part of the feeding system - the tubes that connect gastrostomy to feed tubing. We've had x5 fall apart in a fortnight (they're meant to last about x3 months). The ends with the connections seem not to be glued onto the tubing and they simply fall apart in use. Result is feed pumped everywhere - except into his stomache.

There has been a real deterioration in medical equipment in the last few years - presumably due to cost cutting resulting in poorer quality. Meanwhile we are told 'you're the only ones complaining'. Reason for this is simple. Most of this type of equipment is used in hospitals or nursing homes. If an item fails, the staff member doing the job simply discards it and pulls another off the shelf. There is no incentive (it's actually quite hard) to send it back and/or report it. so it looks like it's working. We have seen this happen numerous times on the wards - in the community, we get shouted at by the budget holders for trying to use 'more than his allowance.'

I do object to this equipment failing on value for money grounds. I object much more to it failing as it results in my son being malnourished, dehydrated and soaked in sticky feed that should be going into his body, not all over it.

Pump up the volume

My son is fed directly through his stomach wall by a feed pump. (As he can't swallow properly, anything by mouth is as likely to go down onto his lungs as into his digestive tract - this is dangerous.)

So we got a call from one of the nurses to tell us that his pump had developed a fault. (Yes the equipment is crap, but I suppose all equipment breaks down occasionally - though you'd think medical stuff would be a bit more reliable.) So she rings the supplier who says ' just put it back on charge for a bit, it should be OK' - doesn't this remind you of the IT helpdesk 'switch it off and on again routine'. What she's really saying is 'despite using this machine for over 15 years you haven't a clue and probably isn't even broken'. Patronising alienating and wrong - all in one sentence. The fact that it should have been serviced 5 months ago (and wasn't) can't have anything to do with this, can it.

Rang them again - this time, 'oh, as you have more than one pump we won't replace the broken one' (we have more than one because they didn't call to collect the other when it broke down last time) 'and we know the machine is overdue for a service, but we're short of spare pumps and engineers so we aren't doing it yet'.

I think a robust call to the contracting dietician may be in order .... But we can do without this. And when all the personalisation is in place we'll be able to shout at them direct ourselves - so that will make it all better, won't it.

PS - yes I'm well aware of the 'yellow card' system to report poor medical equipment, and we use it regularly. We are therefore marked down as troublemakers. And the NHS still use this stuff because it's cheap - it's cheap because it's rubbish!

The broken machine and the lack of a rule book

So, the 'most fragile suction machine in the world' has finally given up the ghost entirely. The plastic rim has split off completely and consequently no suction at all. We have a smaller machine but it can't be used when it's recharging, so we've had to get an old one (that we saved from being thrown out) back into service. No response to our requests for mend/complaints yet, so they've been slightly escalated. All this takes time away from actual caring - that's why the nurses haven't been able to chase it up properly. So he's back with us and we have to find time to chase up problems like this as well.

In himself, he seems OK but he does seem to be having rather more fits than normal today, so we're trying to identify a cause. Discomfort/pain often sets him off with asthma or fits - partly a stressed reaction, partly communication. Current favourite is tight chest due to hay fever reaction and increased salivation going down the wrong way, but it's more speculation than science. Managing a condition like his is very much a 'seat of the pants' operation. Oddly, panadol often stops him fitting - by reducing the pain/discomfort that is causing the fits in the first place. It worked today.

There is no rule book. (There are lots of protocols, but that's another story.) He hasn't even got a formal diagnosis - just a cluster of symptoms. It could be Otahara syndrome (what Cameron's child had) but he's a lot older so we haven't had the tests (not available when he was a child). It wouldn't change his treatment anyway, so no point in doing it now. It came as something of a surprise when we were told (when he was a child) that a third of neurological conditions had no formal diagnosis. I'm still taken aback sometimes by how poor medical knowledge really is. I find the confidence of doctors is often a smokescreen covering a real lack of knowledge and their apparent certainty is often based on not much more than opinion or a current 'flavour of the month' treatment. Some medics really believe they know what's going on, some admit there are limits to what they understand but quite a lot know they don't understand but feel they have to put on a confident front. I tend to have most trust in the ones who admit their limitations.

A complaints strategy

Shout ballistics calculated. In the end, I decided to direct some 'friendly fire' at the OT to try to get the suction machine mended. As the manufacturer had themselves resorted to shouting at nurses and the Loan Store wasn't doing anything, I felt it was time for an independent to bang some heads together.

As a carer, we have very little status with these organisations and consequently no leverage. About the only weapon we do have is complaining to a responsible professional (surgical strike). This is obviously indirect, slow and heavily dependent on the goodwill and professionalism of the individual. Fortunately, in this case I have some confidence in the OT and I'm hopeful we'll get the broken bits sorted out fairly quickly - as long as she isn't on holiday. If she is, or in other circumstances where there isn't a helpful professional, the only option I've found that works is to turn up the volume on the 'complain' knob and aim it wider (blanket bombing) until someone feels embarrassed enough to do something. This makes you look like a whingeing troublemaker. The only option if that doesn't work is to threaten to make it a potential PR issue (nuclear option). This usually gets results but you can't use it very often without losing credibility.

I know it sounds very calculating and cynical and is plenty justification for branding me a serial complainer and professional whinger. I'm sure that's one of the labels I have in private among many of the professionals but I'm afraid I'm willing to live with that. I really don't like complaining. I find it frustrating, demeaning and uncomfortable. The only reason I do it is that it's the only way I have to get what my son needs. What we're actually talking about here is a piece of life critical equipment - he could literally die if it isn't sorted out. And I'm afraid I'd be willing to do much more embarrassing things to stop that happening.

Carers have very little real power - what we do have makes us look bad. I wish it weren't like this. If I could mend the sucker myself, I would.

Machines and medievals

First a gripe. The 'most fragile suction machine in the world' broke again last week. Split plastic - the manufacturer says our nurses are too heavy handed - none of them are male (not meant as sexist) and as far as I know they don't do weight training. Now this is a potentially life critical piece of machinery, to keep his airways clear. I'd have thought the response would have been to get it fixed urgently and argue about it later. (How naive am I?) No, because it's still in warranty, loan store don't want to pay for it mending and the manufacturer say we've damaged it by not following the cleaning instructions properly ... so it stays broken. This is why we held on to the old obsolete one when it passed its sell by date - so that we'd have something to get through the 'admin delay periods'. If it isn't mended quickly, I'll have to go into shout mode again. Probably need to do some calculations to sort out the shout ballistics ... direction = loan store v manufacturer, elevation = seniority level. Thank goodness we're not on Direct Payments.

Meanwhile, we took our son to a medieval re-enactment over the weekend. Lots of interesting textures (he was decidedly not impressed with the chain mail but seemed OK with the pigs head), smells (herbal tent etc. interesting), and tastes (the blackberry and cassis jam was much better accepted than the damson preserve). All in all, he had a reasonable day without too much hypersalivation from the hay fever. He's off out without us today, with one of his mates (plus nurse of course) but didn't forget fathers day - the chocolates will not last.

Picking up pieces is a serious business

This was going to be a run of the mill post about bits of equipment breaking down etc. but life has a way of tripping you up just when you thought you'd tied your shoe laces really well. A medical emergency outside work means his day nurse is suddenly unavailable this morning - don't worry, the contingency we insisted on last time (and the time before) will kick in and all will be well. Er, no. No contingency yet again - lots of kerfuffle and eventually one of his other nurses agrees to fill in part of the day, after his night nurse has stayed on for excessive hours to cover. (This is why we need all the goodwill we can get with the nursing team.)

Oh, and in the middle of this, wheelchair services decide to bring his 4 o clock appointment forward to 1 o clock at no notice and the day gets even more complicated. We pick him up and cover the parts of the day the nurse can't (because understandably, she has commitments with her own family) and hand him back for the next shift.

We know the original nurse is unlikely to make it in tomorrow (because she's texted us telling us what the problem is herself) but if anything has been organised about his care, no one seems to know what, and they've definitely not told us. So current plan is for him to go into his day service as normal, and if there isn't a nurse there, he'll come back to us.

I've paid my electricity bill, so setting the fan off for the s**t to hit it tomorrow should be no problem at all.

Oh, and some of the broken equipment got mended and the bits that didn't we had to find temporary replacements for - because nobody else has.

God help us if we'd been on Direct Payments and had to organise even more of this than we have. One day, we won't be here - and one of the critical pieces won't get picked up in time. If he's lucky it will just mean pain and/or distress. If he's unlucky, he'll die. I'm not sure which is the best outcome. (This is not a joke or me being melodramatic, I really don't know.)

P.S. in the middle of this, my mother is ill (she's 84) and lives 25 miles away. I really don't like choosing between my son and my mother.

A sterile debate

The electronic plague has now spread to simpler but more life critical electrical equipment. We now have two airway suction machines with 'issues'. Both are being sorted out but it's taken time again. One of the problems has been going on for a couple of weeks but as nurses work shifts, the messages didn't get passed/acted on well enough to get someone out to resolve it - someone had to- that seems to mean us again. The other involved a nurse being a little overenthusiastic with the steriliser and using Milton on plastics it wasn't intended for - this made the plastic brittle and cracked it - so the wrong nurse (because she was on shift when the maker rang back) got shouted at inappropriately. Anyway, most of the ruffled feathers are being smoothed and at least the first nurse was using her initiative. The sterilising fluid has been removed. (I can live with mistakes as long as they are well intentioned, admitted to and rectified) I just hope it doesn't lead to yet another round of protocols, about how to wash plastics in soapy water - a quiet word is all that's really needed.

Electronic close down day

Some days the world seems to go wrong in oddly specific ways. Monday was the day for electronic equipment to pass over to that great soldering iron in the sky. First we got a call that my sons DVD player had stopped working - by the time we got there his CD player had stopped in sympathy - all very inconvenient but ultimately replaceable. More critically, his intercom monitor had developed an intermittent fault. As his nurses need this to keep an ear on him if they have to leave the room in case he fits, this is somewhat more critical. Fortunately, they managed to acquire a spare while I try to sort a replacement - Mr. BT is being very difficult to communicate with on this as he hasn't yet responded to my e-mail (probably in the hope I'll just buy another one). I may have to so it's still compatible with the others in the house, but I'll resent it if I don't get a sensible reply. The BT e-mail address and helpline appear to be discontinued(!) and their website is unhelpfully circular. Persistence (read bloody mindedness) will have to suffice again.

Not broken, just crap

Minor panic last night from nurses. His feed pump had been running all day showing the right amounts given - except, when they opened the pack up in the evening, no actual feed had gone through. He hadn't had any feed all day. The pump is supposed to alarm if nothing is going through - but it didn't, it just said it was pumping. Nurses tried to identify problem but in the end my wife had to go over there to sort it out. It took her a few minutes to find the problem - a kink in the tubing before it got to the pump. To be fair to the nurses, they should have been able to rely on the machine to warn them. The only reason my wife sorted it out so quickly is because it has done the same thing to us before - it isn't meant to. N.B. This machine isn't broken - it's just very poorly designed.

We've put in 'yellow forms' about this before but are still stuck using crap hardware. Net results are that my son went a full day hungry and couldn't tell us, the nurses felt guilty they'd let him down (they hadn't), and we missed a planned evening out.

More mending

Meanwhile, back on the equipment front ....

The suction machine is still not back mended, and now it's Bank Holiday, so no prospect of getting it back until Tuesday now - it's a good job we didn't throw our the old, obsolete one we had. This is life critical equipment but they'll get around to it when they're ready.

Less life critical, but still extremely important for quality of life, .... his sling (that is used to hoist him in and out of his wheelchair/bed etc.) has developed a small hole. It isn't going to tear apart but it needs rectifying, so we sent it off. But it's just over a year old so out of warranty - so manufacturers won't fix it - and won't send it back as it's officially faulty. So we have only one sling, and if his sheath leaks we do what? Hoist him in a wet sling? Leave him in bed all the time? Fortunately we have a good OT (Occupational Therapist) for this (different from his wheelchair OT) and she's organised a visit from a manufacturers rep on Tuesday. There are some good people out there willing to pull the stops out when needed.

The good experience with the sling doesn't make the suction machine lack of action acceptable.

Good news, bad news

The good news is - there are two bits of good news.
The long promised shoes have actually arrived. My son, after 9 months, has a pair of shoes that don't further damage his feet, complete with soles, all the way from Sheffield via Lithuania. I'd like to drink champagne from them but don't dare do anything that might damage them.
Also, we've had a reply from CQC to say they've spoken to the member of staff who agreed his care package originally and although he doesn't fit the tick boxes, we can carry on with the package that works. Didn't need a meeting and they did listen - there are human beings out there.

The bad news is that the suction machine is still broken. Loan Store eventually sent a replacement for the obviously broken bit - at the third attempt, but didn't check the machine actually worked. It doesn't. There's obviously a more deep seated problem so back to the telephone again.

So, life in aggregate, is just a little less complicated than it was this morning.