All locked up.

It could have happened to anyone - but it happened to us. Got a phone call a couple of nights ago from sons nurse. They'd taken him out for a visit to the local docks/marina (good) but not noticed the car park closing time (not so good) and got locked into the car park (bad).

Now for anyone else, this would have been a significant inconvenience, the sign was there, so tough. For my son, he was 8 miles from home, his adapted vehicle was locked in with him, he needed medication to control his epilepsy, his suction machine battery would run out and he can't use public transport. For him this was a major problem which could easily have developed into a medical emergency.

There was no contact phone number on the sign and the police were completely uninterested. They only got interested when I mentioned the phrase 'bolt cutters'. Fortunately, another driver, also locked in managed to locate a 'member of the public' who had a key that fitted. (Don't ask me, I didn't ask how.) Score 1 to people power, 0 to officialdom.

I only mention this to illustrate how problems for ordinary people can become disasters for people with disabilities - and the powers that be often seem more interested in the rules than the outcomes.

A victory and a conversation

We have a new suction machine - and I'm assured it works! Small victories. And thanks.

There's a conversation going on about caring on the Guardians 'Comment is Free' section at http://www.guardian.co.uk/commentisfree/2010/jun/25/perspectives-care-peoples-panel 'Prespectives on Care'. I think it's interesting, but as I contributed to it, I would, wouldn't I.

Beer and sniffles

In the interests of 'trying to get a life', we called in at a local beer festival for a very noisy pint with son in wheelchair. As it was in a tent, it was pleasingly accessible. Landlord, staff and other drinkers very affable and didn't seem particularly put off by us having to suction him among the small crowd. (We're known locally, so probably less looked askance at here than elsewhere.) There was loud, live music - the main reason for taking him there. He really appreciates atmospheres and people watching, particularly if he can have his chair 'danced about' a bit to the music, even though he can't actually drink or speak himself. The tasters of beer (a drop in a straw is as much as he can manage without choking on it) went down almost as well as the music and he was really alert in spite of having had a very sleepy evening leading up to it.

Unfortunately we hadn't reckoned with the bales of hay and I suspect it was these that set his hay fever salivation and chest off, culminating in a couple of fairly strong, cyanosed (oxygen stoppage making him go quite blue) fits, prompting us to get him home fairly quickly. Because of the noise and general milling about, I don't think many, if any, people realised what was happening - so no disruption caused.

We've lived here a long time and many of the locals have seen him fit and are quite used to us. Even the local Asda doesn't raise many eybrows these days. There again, we don't have to give him rectal paraldehyde in the biscuit aisle very often these days either - it's amazing how fast a large area of supermarket can clear if there seems any danger that people might feel obliged to help.

The secret to survival is to develop a thick skin and just get on with things. If people feel offended - and some do - it's their problem. We've got bigger ones to worry about, like keeping him alive.

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.

Fairly quiet on the caring front

Quiet for carers is a relative term. What it really means is no major insurmountable problems ... yet. (I'm tempting fate writing this.)

Had a good 3 day weekend with our son - took him to meet some old friends at the childrens hospice he used as a child. He seemed to recognise the place and people, but as he's photophobic the bright sun meant he went into 'aggressive sleep' mode. (A term coined by his sister, where he actively switches off until the conditions meet with his approval - that day, it was when he went indoors into the relative dark.)

Only one failed piece of equipment at present - split plastic on a couple of suction machine components - should be replaced in a day or so. Shoes/toe splints appointment went OK. Main downside for him at present is hayfever - a major problem, as with his poor swallowing reflex, the chances are 50/50 that the secretions go down the airway instead of the digestive tract, so lots of suction needed and considerable discomfort. To the extent that his oxygen saturation got quite low one evening and he needed extra oxygen for a while. He's got some possible injection treatment tomorrow - I tend not to cope well with that and feel bad as it's him that has to endure it.

It's carers week this week, so we were treated to a free pizza with some other people in similar positions, and then went on to lose the pub quiz fairly spectacularly - afraid we don't do football and the World Cup was a major feature. Went to a Learning Disability Partnership Board meeting to bemoan the fact that the councils adult care plans barely even mention people with complex care needs, and in this climate of cuts it feels very like we're being set up for a fairly severe hacking. I'm just a bit afraid 'over my dead body' could get too close to reality.

The really big news is that our daughter has just been told she's got the job she really, really wanted against some pretty stiff competition. Maybe now she'll find somewhere to live and take all the furniture that's cluttering up our spare room, away. (If you're eavesdropping on this - you know we don't mean it - congratulations!) There is more to life than caring and some of it is really brilliant.

Doing it by the book

Epilepsy is a very individual thing to manage - and we currently have a bit of an issue around his epilepsy rescue medication - when to intervene with what. The protocols we've had to work up run to about six pages and cover a series of escalating drug interventions and are designed to keep him out of status (continuous, intractable fits). He's never been fit free but on an average day has about 5 to 7 fits that we don't react to. It used to be that the nurses used their training and clinical judgement to assess when he'd had too many fits, or they were getting too close together to become a problem. But in these days of 'nursing by numbers' it's all spelled out in fine detail, so that if he has one fit lasting a certain time, or a series of 3 in a fixed period, they use drug A, and if that doesn't stop them in a set time, they go to drug B etc.. Things have got so complex and prescriptive that the nurses are now questioning whether the specified times include just the fit itself or also include the recovery time. I think it's far too prescriptive but have a lot of sympathy with them, as they are at risk from CQC and the PCT, and potentially could lose their registration if anything goes wrong. CQC and the PCT insist on everything being protocoled, taking away all the clinical judgement and the nurses ability to act in his best interests. I'd be far happier with a real 'no blame' culture where the nurses could decide for themselves what treatment was right for him, balancing out control of his fits with his quality of life. We could stop him fitting tomorrow - he just wouldn't be awake or have a life, and he'd probably succumb to a major chest infection quite quickly. But to be 'safe' they have to keep to the protocols - so now we have to have another meeting to fine tune, micro manage the trigger points on paper, rather than seeing how he really is. It seems more important to be seen to be doing it right than actually doing it right in practice.

His epilepsy protocols are just one set - he has similar things for gastrostomy (feeding direct through stomache wall), oxygen, various PRN (as necessary) medications, hospital admission, antibiotic use etc. etc.. We wouldn't trust a nurse with him unless we (and they) were happy doing his care. The paperwork seems to exist largely to cover the back of the PCT. They say its because they have a 'duty of care' but the reality is that we don't actually have protocols for airway suction because ' it's still with the solicitors'.

I'd be much happier if the nurses could be allowed to nurse and we could concentrate on giving him a life - as it is we'll all have to spend even more time making up forms so that they can tick boxes in them and the PCT has someone to blame if it doesn't work.

Things can only get .... better ?

Gradually getting on top of things. Agency nurses who know him, now doing sons day care until things get sorted out. We did part of yesterdays daycare ourselves with a substantial part being picked up at no notice by one of his 'bank' nurses - if this wasn't an anonymous blog I'd thank her by name, but she knows who she is - a star. Suction machine seems mended, wheelchair services are looking at kerb climbers (but it'll take a month or two), new intercom on order and temporarily replaced by loan from us. Mum still unwell but sister keeping an eye on her.

Unfortunately, son looks like he may be developing another chest infection, oxygen saturation was low yesterday evening and he's been having some longer fits last few days. My wife took him to GPs to discuss treatment this morning and he's back on antibiotics (only managed 5 days off them this time). We're afraid he might be developing a consolidation on one lung again so it's all hands to the physio pumps to try and stave it off. We're very lucky having a superb physiotherapist (not NHS, employed by his service provided) and he's trained us and the nurses in a range of techniques. Unfortunately, it's hay fever season and due to poor swallow reflex, it's a 50/50 chance whether the secretions go down his airway or his digestive tract - hence the need for suction.

On the upside, GP has agreed that my wife can be 'clinical lead' in his care formally. The lack of anyone in that role has always been a bit of an issue - not sure how the care provider organisations are going to react yet. She used to be a ward sister before the children, so although her registration has lapsed, she's been 'de facto' clinical lead most of his life. If it hadn't been for her skill he wouldn't have got anywhere near this far but it's hard getting 'professionals' to accept it. Although she doesn't have a current NHS PIN number, she does have 27 years specialist experience on top of her general nursing training and is actually better qualified than the rest of the nursing team. There isn't really a status of Expert Carer, but there should be.

Commissioning without care

Wearing its social heart prominently on its sleeve, the Guardian sponsors the National Commissioning Conference next week at the Lowry in Manchester (Tuesday/Wednesday). This is where all the well paid service commissioners get together to discuss how they are going to deal with us poor disabled people and their carers in these straightened credit crunch times - but they don't want to hear from us. The speakers list consists of accountants, academics, government department and a number of service providers (I imagine they're there looking for what little business will be left after the cuts). But not a service user, disability representative or carer in sight - and at over £400 a ticket, I don't think there'll be too many in the audience.

I've contacted them a couple of times (see previous post on this) to point this out but have been very politely told where the exit would be if I were to be there. You may wish to let the Grauniad know what you think of their actions on empowering the disenfranchised ... or you may just want to go to Manchester and shout at them. I may do that myself if the practicalities of caring doesn't stop me.

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.

If you can find a better hole .....

I was just having a jolly time (not) down a deep, filthy, wet hole in the garden mending our water feature when we had an unexpected visit ..... from our son who was out with his day care service. They were having a new nurse shadowing his care so that he could cover for an emergency and thought it would be good to see his home environment. It was really nice to see him unexpectedly - it's always "he'll be back home at 4 when the shift ends" etc.. It really feels as though he is starting to grow up with his own life when he appears at the door unannounced.

Anyway he stayed for half an hour or so and we all had tea and a bit of unplanned contact time when we weren't his main carers - and it was really nice, in a very quiet sort of way. Then he went off back and left us to it. And I had to go back underground.

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.

Risk mismanagement

On the one hand we get a message that the nurses want my sons fit reaction protocols redrafted (6 pages of protocol) as they think they may be interpreting them differently from one another. On the other hand, when we check what the protocols say, we discover that the last one we got changed officially three months ago, hasn't been updated in any of his files.

I'm not so annoyed about the failure to update the files as you might imagine. What really irritates me is that we have to have these prescriptive, fine detail protocols in the form we do. They are the ultimate in 'nursing by numbers' and in my view, take away the discretion nurses have to act in the patients best interests. These are after all, fully trained and registered nurses with accepted qualifications as well as a battery of specialised training competencies. I don't have a problem with written guidelines, but when what nurses can do is spelt out in such fine detail, I can't help feeling that it's less for patients benefit than to protect the commissioners etc. from being sued. It doesn't even protect the nurses particularly, but it does give the authorities someone to blame if an error occurs. It all seems to be part of the beaurocracy of 'protection' and 'risk aversion' that prevents anyone from using their own judgement and taking any responsibility for their actions. Authority no longer seems willing to trust the people it employs. And the reality is that life carries on in spite of it.

CRB checks are mandatory but take three months to come through and don't actually prevent anyone wanting to abuse vulnerable people from doings so. Risk assessments get used to exclude disabled people from doing anything remotely exciting or interesting. Nurses have to comply with detailed protocols even though simple admin errors mean the protocols are actually out of date and incorrect. These things don't actually help to provide better care - but they do make it easier to find a scapegoat when things inevitably go wrong. Things do go wrong in life - shit happens. The aim should be to avoid the obvious blunders, recover the mistakes and trust people sometimes.

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.