Quiet, if not silent, night

Christmas is a time I've come to dread. Impossible to get enough nursing shifts covered, snow makes roads impassable (can't afford a 4x4 even if I approved of them) and sons health is usually fairly edgy due to severe asthma/low temperatures/flu etc.. We've spent too many Christmases in hospital to approach them with anything other than trepidation. This years problem looked like it would be compounded by service cuts, but it's turned out to be the threat of them rather than the reality - so far.

So, daughter is home till after New Year, she and my wife have gone to Midnight Mass, we've a nurse just come on to do the night shift (thank you, thank you), our son has settled in bed listening to a story tape (he's needed a fair bit of ventolin but seems to be quite settled for the moment) - I can hear the suction machine and the oxygen concentrator in the background but someone else is dealing with it just now. And I have a few minutes of Christmas Eve to myself. Daren't risk a beer, just in case I need to drive if anything goes wrong, but I've got myself a coffee and a mince pie. We take over again at 8a.m., so barring emergencies, we should get a reasonable nights sleep as well.

Just now the world feels OK. Happy Christmas to anyone reading this.

(S)no(w) place like home

Like everyone else up here, we're up to our eyes(well ankles at least) in snow. For most people this is a either a bit of fun or a substantial inconvenience. It's a little different for us. The logistics get interesting. Not all the nurses can get in for their shifts and our own house is only accessible by foot (had to leave the car at the main road a mile away.) Fortunately, our son was at his other address when the heavy stuff fell - it's rather more accessible than here - and the nurses have pulled the stops out by swapping shifts so they work a 'double shift', minimizing how much they have to travel to work. So far it's working OK - we're just hoping the roads clear enough for us to get him home in a day or so as he'll be without nurses then. It's not all bad - our daughter is home for Christmas and we have built a snowman - why should the kids have all the fun?

Despite all the toing and froing of late with his service provider, we have to accept that they've gone the extra mile in these conditions - literally, with one of the senior staff collecting nurses in their 4x4 for shifts when their own cars had been abandoned. Thank you. This could have been yet another trauma and stress inducer, but they've prevented that. Meanwhile, our son's having a chill out indoors with extra lie ins and DVDs. Christmas is usually a difficult time for us with chest infections, disrupted transport and missing nurse shifts.

Maybe this year will be better - don't want to speak too soon - we had to take him into hospital at 5a.m. Christmas morning a few years ago (fits/asthma/chest infection).

Merry Christmas - have a drink for us and enjoy.

Master of the (water) closet

One of the things many carers will be all too familiar with, but which is rarely talked about is - poo.

Following yesterdays debacle with my sons failed feed pump, we had to run his feed late into the night to get him sufficient hydration and nutrition. (His 'grumpiness' subsided quickly once we got a little feed into him - surprise, surprise.) Normally his bowels move a few hours after he's finished his feed for the day (I should probably have warned people of a squeamish disposition to leave this post early.), so it shouldn't have surprised us when he had an 'accident' just as he was about to leave for the day. It did surprise us, so the end result was a copious amount of heavily soiled clothing. My wife and the nurse cleaned him up and redressed him so he could go out, and I took up my natural role as 'poo master.'

This is a role I've taken on as the least skilled part of our care partnership. It's not particularly glamorous but it is necessary and I'm sure many other carers are at least as expert as myself. There are real skills in dealing efficiently with multiple, large items of clothing, slings, towels, wheelchairs, beds, carpet etc. and these go largely unrecognised by the outside world - and don't exist as far as Care Assessments, Person Centred Plans or Case Reviews are concerned. This post is intended as a celebration of all carers who regularly spend a happy hour or two up to our elbows in sticky, brown semi-solid waste. We are the unacknowledged experts at smell containment, soil removal, sluicing technique, pre wash solids reduction, drain unblocking and carpet retrieval. (not necessarily in that order.)

• We have the skills to transport heavily contaminated items from bedrooms to washing machines without leaving a trail a noseless bloodhound could follow. (Most of the time anyway.)
• We can transform a slimy wheelchair into a gleaming chariot with little more than a shower cubicle, a face (never used again for this purpose) flannel and a cupboard of cleaners, bleaches and disinfectants.
• We are the operatives who always get to the extractor fan first, who remove the items from the scene as they emerge, so that there's clean area to sort things out, who 'disappear' the offending evidence. (And don't drop it all that often.)
  

I know my wife appreciates this,(my son carries on blithely regardless), I hope other people who do this work are appreciated, though if you're a lone carer, I suspect there is no one to thank you - I at least, understand that this isn't a trivial exercise and just feel someone needs to express this now and again. (...and again ...and again.)

It's a dirty job, but someone has to do it - and I don't actually mind that it's me. This never fails to surprise me.

The wonders of poorly made technology

Meanwhile back in the real world, our son is reported to have been 'grumpy' all day - sideways looks, not happy (he can't speak - this is how he communicates). So we checked things over. His feed pump (he is fed directly into his stomach) has been telling the nurse he'd had his full amount. When we checked the bottle however, it was still full. He'd actually had no feed (and minimal fluids) all day. I think he had every right to be grumpy.

It's not meant to do this but the 'giving sets' are poorly made and packaged (this one had x2 severe 'kinks' in the tubing, blocking it off) and the pump is badly designed (it doesn't alarm if the blockage is in certain parts of the system). So it happily pumps nothing all day but shows everything is OK. the nurses should possibly have checked the feed itself (we did), but they shouldn't need to. This equipment is inadequate - we've reported it a number of times (yes, we have used the official yellow card system) but it's standard issue. The most insulting bit of all is that the call centre we reported it to seemed to think that sending us a free box of giving sets was an adequate response. This is not a substandard DVD, it's a piece of medical equipment. It shouldn't fail like this, it should alarm if it does fail and they should recognise that failing to provide fluids and nutrition for 24 hours is a serious problem.

We will of course report this to his dietician - again - but I'm not holding my breath. Last time the same thing happened, the result was precisely the same as the food delivery - nothing. A disturbingly large proportion of his medical equipment fails or is poorly made - wheelchairs, hoisting slings, urine sheaths etc. and it's got worse in recent years. I assume the NHS is buying cheaper products to save money. At least they won't be able to cut costs on these - they can't get much cheaper and nastier.

From meetings to checklists

Lots of meetings. Care package reviews (cutting rooms), Learning Disability(so called) Partnership Boards, MP's surgery (most sympathetic so far - but out of government - confirms that Mobility Allowance cut is now law), etc. etc. Meanwhile the 'review assessment' plods on (honest it's not about cuts, we're just assessing his needs - it's just a coincidence that Social Services have just announced 26% cuts to adult care). Lots of health and Social Work time devoted to assessment and 'observation', none to actual social work or his care.

I'm getting beyond cynical about these cuts - I know it is affecting everyone but the sheer amount of effort going into it makes it feel like persecution. Anyone would think we were bankers the way we're made to feel guilty for needing care/support.

On top of this, his main care provider seems to be retreating into a 'doing everything by the book' bunker. Person centered is giving way to standardisation on all fronts - how he gets his spending money dispensed, how his emergency medicines are organised, etc.. And none of this is for his benefit - it's all so that they can prove they do it the same way for everyone, whether it works for him or not. I can only think they are terrified of CQC or the commissioning authority finding something that doesn't fit their checklist.

This isn't progress - it's degeneration. Paperwork has become more critical than care, checklists have replaced humanity. Being seen to do things is more important than doing them and it's for the benefit of the 'care police' not the person with a disability any more.

This rant will almost certainly continue - things don't look like getting better any time soon.

Oxygen and paperwork

In spite of all the cuts and hassles surrounding his care package, our son carries on regardless. He's actually quite well in himself despite the cold weather - it usually precipitates his asthma and develops into a chest infection. He has been on antibiotics until yesterday, so we'll need to keep a close eye on his chest over the next few days to make sure it doesn't deteriorate. My gut feeling is that the PEP mask (Positive End Pressure) used x3 times a day, coupled with a low level of oxygen most nights has helped immensely. Last winter was a nightmare - continuous chest infections, one side consolidation, hospital admission at 5 a.m. Christmas Day, etc. etc..

The difference his chest makes is enormous for his quality of life. He's more alert, has fewer fits and generally seems more comfortable. I know this could all change very quickly, but having him sitting on the sofa with us and looking round listening to his sister on the phone is great.

Meanwhile, social services are 'observing' his day service over the next few days - as this review is purely prompted by the cost of his service, I think I can be forgiven for not quite believing the lady when she says she isn't trying to cut his service service, just 'assess his needs'. She probably means it, but I don't have the same assurance from the people she reports to. At least she will have seen him, her superiors, who will actually make the decisions, will only see the paperwork.

Real Life

On a happier note, his health is OK just now despite the snow and freezing temperatures. His chest/asthma is holding up reasonably - we usually get a dip in these conditions. Unfortunately his activities have been somewhat curtailed this week - too cold for swimming, no one else (even tutor) turned up for wheelchair keep fit and the hoist at the sports centre has been broken for three weeks now, so no trampoline physio either.

We tried to make up for this by taking him places ourselves. He slept right through a visit to see his grandparents (what his sister calls 'aggressive sleeping' - i.e. unrousable but with muscle tone.), but really enjoyed 'Unstoppable' at the cinema. He likes noisy, action films even though he's officially registered blind - he has some limited peripheral vision and is developing cataracts but sees enough to get the visual stimulation as long as he's at the front. It does mean that whoever is with him tends to leave with a stiff neck and a headache, but it's worth it as he visibly reacts and obviously enjoys the experience.

It's good to get away from the cuts once in a while.

Immobility Allowance

We went to see our MP about the governments Spending Review withdrawal of Mobility Allowance from people in registered care - our son and lots of others, particularly those with complex care needs and learning disabilities. He was very sympathetic and personally disagreed with it, but as he's in opposition now, can't do much about it. Apparently it is now law and will come into force on the due date when everyone has forgotten about it. We've had quite a few people saying to us that it was just a proposal and they'd never go through with it. They have. The term in the Spending Review was 'equalised' - 'equalised' to zero.

I'll put up chapter and verse, and which MPs voted it through once I've got the details, but basically it's all the Conservatives supported by the bulk of the Lib Dems - though I suspect many of them aren't fully aware of what they've done.

So we'll have to budget for £50 a week off my sons already meagre benefits - he gets very little e.g. no Income Support as he's classed as in a nursing home most of the time. He can't actually have a real life without his adapted van, so we'll have to find a way to pay for it out of our pension. We're certainly 'in it' but it doesn't feel like 'We're all in it together'.