Friday, December 24, 2010

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.

Sunday, December 19, 2010

(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.

Thursday, December 16, 2010

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.

Wednesday, December 15, 2010

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.

Thursday, December 9, 2010

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.

Friday, December 3, 2010

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'.

Saturday, November 27, 2010

Storm clouds gathering

Met with Health and Social Services - all very polite and interested. Seemed like nice people - stressed that they were there simply to review his care needs not to cut his services. I'm sure it's true - but I'd asked their boss x2 levels up the heirarchy why they were having the review and he made no bones about telling me that our sons was an expensive package of care (he's expensive because his needs are complex) - that's why they're looking at it. It's not what the people who we met say that I'm worried about - it's what their bosses will do with the information afterwards when we're not there.
Anyway, they proceeded to look at my son for a good five minutes, and then sat down and had a two hour meeting ticking boxes on their forms without him - I think that says most of what I'm worried about. Can't do anything more about it until we get a reaction, except worry. (Just incidentally - we asked about not having had a carers assessment. They said they had carried one out but hadn't seen any need to tell us about the outcome - so much for nothing about me without me.)
They now know a lot about my son - but understand nothing. They care a lot - not about him but about how much he's costing.
This feels like the lull before the storm.

Meanwhile in the real world, our service provider has already told us we won't be getting nurses when he's with us any more, - they need to be seen to be making savings. They insist on nurses when he's with them, CQC insists on that as they are regulated. As CQC don't regulate family carers, they don't need to provide them when he's with us - he's the same person - he doesn't suddenly get better or easier to deal with when he comes into our house. (but we don't get paid, so we're a lower form of less valuable life.)
If it looks like a cut, and it feels like a cut - I'd go so far as to say it is a cut.

Wednesday, November 24, 2010

So it begins

Yesterday we had a meeting with one of our service providers. My wife cried, I got very angry.

They've decided to not provide nurses when our son is at home any more - apparently nurses are needed when he's in their care but care assistants are good enough when he's with us. (and it's cheaper)
Tomorrow we meet with Social Services and the Health Authority - the council, who run Social Services here are rate capped and the local NHS Trust is looking for 30% cuts. Our sons care package has been selected for 'review' because it's expensive - and we've been told to expect this to happen every year from now on.

Right now it feels like we're getting a good kicking and being told to apologise for objecting.

Tuesday, November 23, 2010

Sleepless into battle

Apologies for absence lately - life takes over sometimes. Currently enmeshed in series of care package issues that are taking all our energy, time and sleepless nights.

Background worry that governments Spending Review will reduce sons minimal income by £50 a week due when they take Mobility Allowance off him as he's in registered care.
Fallout from CQC's directive (now countermanded) that his nurses couldn't work off base continues - meeting today could resolve it or make it a major problem.
NHS and Social Services have decided - for no reason they can give me, to completely review son's care package. As we had a major review just over a year ago, and managed to avoid another where they tried to send in cost cutting consultants being paid 'by results' earlier this year, we're obviously worried about cost saving cuts. Given council is rate capped and cutting everything else and NHS locally is hacking services at 30% rate, I think our worries are justified. Meeting day after tomorrow terrifies us.
Car accident damage mended but other driver hasn't even reported incident to his insurers, so uncertainty there as well.

Meanwhile weather gets colder - winter is always worst time for his chest - I'm starting to get obsessive about wind and temperature forecasts. He's OK at present but our stress levels are off the scale - every night is a sleepless one. The people responsible for these things have no conception of the effects of their actions on real people. We'll obviously fight these but at present best we seem to be able to do is try to insulate him from worst fallout of these 'administrative' issues.

Wednesday, November 10, 2010

Damage done

We did seem to have won our battle with CQC, but it may be a bit of a phyrric victory. We've got them to agree that sending the nurses 'off base' is no longer illegal - though they don't seem to have confirmed this in writing to the provider yet. However, the world didn't stand still while they had deemed it illegal. Nursing shifts had been re-allocated, strategic re-assessments of priorities made etc. etc. by the service provider. The net result is that we still can't get nurses at home - now for more operational reasons. The damage caused by CQCs unthinking directive has already been done. It's also significantly damaged our partnership with the service provider. In trying to get back to where we were, it's now problematic and for the first time, we've had real arguments with them. What had been a co-operative 'give and take' is fast becoming more confrontational as they feel everything has to be in writing and 'done by the book' now. 'Nursing by numbers' is the order of the day and human care is the casualty.

Immediately, we'll probably have to cover some 'waking nights' if we want him at home - this will make some periods at home into 48 hour shifts with no nurses. Any minor change to his care has now to be protocoled and paperworked - it takes the nurses eye off our son's real needs and slows down how they can react to his unpredictable condition. This is real - CQC's intervention was remote and paper.

We will probably never get back to where we were - best we can work for now is a new, more settled relationship with the care provider and it's going to take time and work to get there. Damage has been done but CQC walk away uninvolved and unconcerned. CQC should be there to ensure best care is provided, not damage good care that works.

Sunday, November 7, 2010

Car crash

Everything else pales into insignificance when you get a phone call that your son has been involved in a car crash. Someone drove into the side of his wheelchair vehicle (admitted liability, but that doesn't make it much better). Fortunately no one hurt - driver, nurse and son all shaken up but damage limited to the van - other driver appears OK as well.

But the time spent getting there was bad. It could easily have been very different - felt physically sick and got very little sleep last night.

Meanwhile the paperwork explodes. Insurance, RAC, garage, incident forms, police numbers - all the normal stuff a standard motorist would have but complicated x10 times as my son is the keeper, but not the driver or insurer of the van - and he can't speak to the call centre as he's non verbal.

Looking forward to them taking the car away for repair (extensive) - not! Without his wheelchair transport we'll have to hire another at £75 a day, though we should get the money back eventually. This should give us a foretaste of what it will be like when Mr. Osborne takes his Mobility Allowance away. (The local Dial a Ride has just been closed for cost cutting reasons and he's barred from the accessible buses for 'health & safety' reasons.) Terrified they might write it off for cost reasons - it took 6 months to get this one delivered.

All this is distraction - brain won't stop going back to how much worse it could have been. He's disabled but no less valuable for that to us - I shouldn't have to say that, but I know it's what some people will be thinking. There was him, his nurse and a driver in the van - all were equally at risk, but I can't help thinking some people would have seen his death as less of a disaster than the other two if had been that bit worse. I wouldn't, he's my son.

Thursday, November 4, 2010

The sound of one scissor cutting

There's something going on, that we're not being told about. That's we here rather than people at large. Our son's care package is a complex 'shared care' arrangement where ourselves and x2 charities all do some of my son's care in a co-ordinated whole. It's jointly funded by Health and Social Services - or at least no one told me anything had changed. But we've just heard on the grapevine - no official contact - that someone at the Health Authority is instituting a re-assessment of his care (no change of circumstances have prompted this) with a view to bringing it all under 'continuing care' funding.

I don't know the full implications of this but I do know it will have an impact - e.g. Direct Payments and 'Personal Budgets' aren't applicable to NHS funded care - and 'continuing care' is NHS funded. On top of doing his care and sorting out the other issues, we'll now have to start looking up all the implications of 'continuing care' funding. I don't have time for this. And I'm really worried it's being instigated with a view to saving money and cutting services - especially as it seems to be happening behind our backs.

I'm starting to get perennially paranoid - but I think they really are out to get us.

Victory - sort of

I should be pleased. I should be happy. After a closely argued letter and a few robust phone calls, CQC has agreed that their registration applies to the service not the location. So our service provider will not be acting illegally by sending nurses to our home or into hospital to help with our son's care. Great we won - didn't we. Well yes, but the battle did a lot of damage. We had a close co-operative and mutually supportive relationship with our service provider. We operated in a climate of mutual trust, and the flexibility this allowed was one of the things that made his care package work so well.

It's not quite the same now. Some of the closeness, informality and humanity has gone and 'nursing by numbers' now seems to be more important than making our sons life as fulfilled as it can be. The wedge driven in by the first CQC decision created a rift that's going to take a long time to heal even though the wedge has been removed. We'll get the nursing care at home - but it feels more grudgingly given now. He'll get his dedicated nurses in hospital - but I doubt it will be as fulsome as it was. They will send nurses here when he's ill - but whether they'll try as hard to fill all the shifts, I don't know.

This has taken it's toll. We won, but at a high cost. We feel depressed and rejected by the experience and we're already having to work harder to make sure our son gets the social outings they used to initiate. What's changed is the background fear that they'll be 'breaking the rules' if they depart from the written protocols at all - even when it's obviously in his best interest. Care shouldn't be like this. The rules shouldn't get in the way of the humanity.

We will rebuild it - we just shouldn't have to.

Thursday, October 28, 2010

In the real world

Meanwhile back in the real world. (These days I tend to regard the world of CQC, DLA, Care Commissioners, etc. as a separate Alice Through the Looking Glass world - unfortunately despite it's surreal nature, it has a real impact on our lives)

Our son is quite good at present. The Oxygen saga has reared its head again - error on prescription means the engineer has limited his concentrator to minimal, but we're hoping to sort that out on Monday, meanwhile bottles will have to suffice. His chest seems OK at present, the high winds still precipitate his asthma, but the PEP mask therapy seems to be quite 'productive' in both senses - it seems to be working as a therapy and it appears to be clearing gunk from his peripheral air sacs, particularly the one prone to consolidation. It's also a lot less intrusive than 'beating'.

Fits are about average. He had a urine infection earlier in the week but the antibiotics seem to be clearing it up.

Getting support for the Mobility Allowance issue - daughter being particularly helpful in a very practical way - thank you.

Life this side of the Looking Glass on a relatively even keel - but I don't think the glass is shatterproof.

Tuesday, October 26, 2010

CQC boxticking rules - not OK

We've had our initial meeting with care provider. It got quite emotional. We feel devalued as carers with 28 years experience whilst being left as his only care option while the administrative changes kick in. They were very sympathetic but have no option but to stop sending nurses to help covering the night shift when he's at home without breaking the law. They will also be acting illegally if they send nurses to our home when he is ill, or into hospital if he is admitted (despite having a detailed protocol agreed with the Health Trust), so it's even worse than we thought. Incidentally, if they can't send the nurses where he is (when ill) they will still have them contracted - they will have to pay them to do nothing or lay them off, while we do all his care, 24/7 unpaid.

This is all the result of CQC changing the registration rules. I've written to CQC and am awaiting an answer. We're arranging to meet the service commissioners and may be forced to take Direct Payment (against our will.)

We had a package of care that suited my son, worked well and was officially regarded as 'excellent' and innovative - but for purely administrative reasons this is now to be dismantled. We will rebuild it, but it will take time, stress and heartache, and I resent having to. It's already cost us many nights sleep, will almost certainly cost us more work and covering more shifts unassisted than we do now, and will not improve my sons care one iota. It may even cost the public more to administer. The best we'll get out of this is to insulate him from the changes, though if he gets ill during the changes, even this may not be possible.

Cutting those who can't fight back

It appears the Mobility Allowance cut applies to all people in 'residential care'. This is a major cut, £20 or £40 odd pounds a week per person. Lots of disabled people will lose their Motability adapted vehicles, some people use this for motorised wheelchairs as they can't self propel. One distressing aspect of this is that it was referred to briefly in George Osbornes statement - a passing comment referring to 'equalisation' which was only elaborated as a cut to Mobility Allowance about page 50 of the Treasury statement.

My request to write to MPs was not on my own son's behalf, though it does affect him. It was to stop this being enacted for all disabled people getting Mobility Allowance in 'residential care' - this is a standard care model for many disabled people living in the community - particularly multiply disabled, people with complex care needs and learning disabilities. These people often get only £20 a week 'spending money' because their care is paid for. Mobility Allowance allows them some independence - until this takes effect.

Friday, October 22, 2010

Stay at home

Just digesting the news that the governments spending review will take away my sons Mobility Allowance. He's officially classed as living in a one person 'nursing home' when not with us, so will lose one of the few benefits he gets. (As a nursing home he doesn't get Income Support etc.) His mobility Allowance bought and runs his wheelchair adapted van. He needs this to get a life, visit relatives, come home each week etc. with all his equipment, so public transport not an option.

Please speak to your MP about this. Even if it's Mr. Osborne!

I don't see any bankers under house arrest - that's what he's condemning disabled people to by taking this away.

Tuesday, October 19, 2010

Who regulates the regulator?

Who do you go to if the CQC rule changes have a detrimental impact on someones care? Presumably CQC itself.

For details see previous post, but generally, we had a good package of care that gave my son as normal a life as possible. Following the changed CQC registration regulations, our care provider would now be acting illegally if it allowed its nurses to look after him outside the designated nursing home location - so if he comes home, goes into hospital (both of which he does a lot), goes on holiday etc. etc. - he can't have any care. This is a major step backwards from a person centred plan and puts him at risk at home (as we need to sleep from time to time) and in hospital (as there aren't enough nurses on wards to 'special' him).

The only option we seem to have left is for us to take part of his budget ourselves and employ the nurses ourselves (because we aren't regulated! - is this daft or is it just me?). We don't know if the commissioners will wear this, or if the nurses will be willing to work directly for us, but it looks like we're going to have to find out. Meanwhile, no nursing care outside base, lots of risk if he gets ill or they can't cover a shift and mountains of work for us on top of his care when at home.

I know the provider could in theory register as a nursing agency but as a small charity it would go broke in the process of trying to fulfill all the requirements. The provider is on our side but shackled. If we let it go, he will be at risk and the service will collapse next time he's ill. We will be seeing the commissioner soon and I'll be writing to CQC myself when I've calmed down a bit.

This does not improve his care. We're at best not going to let it get any worse. The lack of flexibility and understanding of the real world at CQC is staggering. This was an 'excellent' rated service that will now be damaged by the very people who rated it 'excellent'.

Tick boxes rule, OK!
Not if I have anything to do with it.
Before I was cross, now I'm angry - and even I don't like me when I'm angry.

Sunday, October 17, 2010

Bracing myself

I am really the shy retiring type. But having a disabled son to care for changes you. I haven't done the assertiveness course most of the professionals we deal with have been on, but I have had lots of experience - and tomorrow I'm going to need it, again.

Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week. (Yes I know this is backwards, but this is CQC, NHS, Social Services, provider networks etc. Alice through the Looking Glass land - it's also complicated as we do have some care 'on a different basis'.) Anyway, I have to brace myself and we'll probably end up playing Mrs. Nice and Mr. Nasty again. We do this quite deliberately these days - we need Mr. Nasty to stand up to the authorities and Mrs. Nice to maintain our relationship with these people so the service can continue between crises.

This is a very cynical way of operating and I heartily dislike it - I even disapprove sometimes, but in all this the 'prime directive' (thank you Star Trek) is the best care for our son. And if it helps us hang on to a good care package, I can live with my own disapproval. For CQC the 'prime directive' seems to be seeing that the box has been ticked (though they force someone else to tick it), for the NHS it seems to be spend as little as possible but avoid bad publicity (as the lawyers cost more than the service), Social Services have fewer qualms - they just want to save money at all costs, (to hell with the publicity, the press shout at them anyway).

To them it's all a complicated 9 to 5 game they get paid for playing. To us it's real life. We've won in the past because we tend not to stick to their game rules - it always seems to surprise them for some reason. I think it may come to that again. The fact that they're playing Monopoly and we're live, also helps - it can even be surreally entertaining occasionally. It must be very difficult dealing with people like us. Tough, give us what we need and you won't have to.

Friday, October 8, 2010

Making it personal

Sorry for absence of late - the real world took precedence (see below) -

The most personal thing in the public arena for me this week has been Virginia Ironside's comments on BBC (that thank goodness I didn't see, but have read) on how she seems to think it's fine for mothers to smother their disabled children if they're in too much distress. Basically I thought this road had had a firm 'No Entry' sign erected 60 years ago in Nuremberg, but it seems the Daily Mail columnist has forgotten about the Jews, gypsies, homosexuals and disabled people who used to live in Germany. I was getting quite worked up about the care we give our own son and how we try to give him as good a life as we can, and how her comments devalue him, us and society in general, but I think my daughter put it into perspective. Her comments were more along the lines of - 'she's wrong, I can see where she's coming from as someone with no experience of disability having read the transcript in context, but she still definitely deserves a good slap' for being offensively wrong, massively insensitive and having her foot so far down her mouth she's in danger of tripping over when she eats. I'm taking my daughters advice and not going to dignify her comments with any further discussion.

Meanwhile in the real world, our own personal personalisation saga limps on. We have an excellent care package (CQC says so) but CQC can't cope with it's non standard form (it didn't have a problem as CSCI until it changed its own rules), so our care provider has now been told that, good though it is, it will be acting illegally if it continues sending nurses into our home. The care provider can't afford the beaurocratic requirements of registering as a nursing agency for just a few shifts a month, so we could lose an important part of his care package. We're still doing a 'workaround' but a major battle looks like looming which will drag in the Service Commissioners, Health Authority, probably our M.P. etc. etc. - all because the rule maker and enforcer has changed its own rules. The need for care hasn't changed and everyone agrees the current care service is excellent - but it's now going to have to change for purely admin. reasons. One suggestion made was that the problem would go away if he didn't come home - the fact that this would limit what he and we could do didn't seem to have registered. It now looks like we may not be able to have him home for Christmas and have no contingency in place for some nursing sickness. This makes a mockery of Person Centred Planning as well as the theory of the Personalisation. We will of course not be accepting this.

On another front, I've been involved with an early casualty of the current Governments June budget changes. In another capacity as a charity trustee, I was helping another person with disabilities move from the increasingly inappropriate flat she currently occupies to buy her own home with an interest only mortgage. There were lots of problems and complications but we had got there - deposit, specialist mortgage, legal and administrative hurdles vaulted (not effortlessly) when dear Mr. Osbourne changed the way the Revenue calculate mortgage interest for benefit purposes. The change means that she can't now afford it - by an extra £47 a week.

Not personal to me, but very personal to the person involved. A learning disabled person unexpectedly discharged from our local hospital to his carer (a friend of mine) still catheterised. He'd been pushed home from the nearby hospital in pouring rain in a wheelchair, dressed only in a hospital gown. No explanation of the catheterisation or discharge information for after care. When carer rang ward they seemed to have no record of the catheterisation either and no process for removal - it took a number of days to get someone qualified to remove it. I understand a formal complaint is being made. The words dignity, care and absence of, spring to mind.

Wednesday, September 29, 2010

Now it's personal ........ isation

Personalisation of social services is not my favourite thing - as you may have gathered. I don't want it, have seen the damage it's being used to cause by cutting services and see it, like Care in the Community, as an unarguably 'good thing' that is being used to smoke screen cuts in real services for vulnerable people that need them. And now it looks like we're going to have to face them ourselves.

Our own service predates the whole 'personalisation agenda'. It's based on a Person Centred Plan and provided by ourselves and two charitable service providers, funded originally jointly by Health and Social Services. It's complicated but it works and was recently rated excellent by CQC. But now CQC has changed it's regulatory requirements and neither service can afford the complexity of registering under all the headings required for part of the service for just one client. The current proposal is that the part of the service they can't register for be passed to us (because as relatives/carers we do don't need to register) and we employ the same people/service under Direct Payments.

There is no change to the service, no one benefits, it is a wasteful duplication of work and it complicates matters even more. We will have responsibility for employment, money and administration on top of the care we deliver - at no cost of course. This is daft, but to keep legal we may well have to go along with it.

I don't yet know if moving this part of the service to us will reduce the money provided for it but suspect it will. I'm not yet sure what we are going to do about this because leaving all my principles behind, the only thing that really matters is that my son gets the best service he can. I won't jeapordise his care for this but I'm deeply unhappy about it.

A few riders -
I don't blame the service providers, they are doing their best to provide a high quality service but have been put in an impossible position. I do blame CQC and the 'Personalisation Agenda' for it's 'one size fits all, tick box culture'.
The fact that as family/carers we don't have to register is bonkers - it's in the family, not service providers, where most abuse and neglect takes place - this would not protect my son if we had been abusive parents - I thought that's what CQC was there for.
We are relatively articulate advocates for my son. From my involvement with other people with learning disabilities, I know many people who will not be able to argue their corner themselves - and the cost of advocacy and brokerage comes out of the service package cost, reducing actual care even more. If we can't win this battle, what hope for them.

I haven't given up but I am very worried.

Tuesday, September 28, 2010

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!

Thursday, September 23, 2010

Every single breath you take costs

We've just been informed that my son doesn't use enough oxygen.
Yes he does - he uses what he needs and sometimes we have to help him with more.

But the meter readings on his oxygen concentrator mean the paperwork for the firm that supplies it have persuaded them he doesn't use enough to justify it - so they rang up wanting to take it away. We said no ... and we rang the oxygen clinic who said - 'oh yes he does need it, but not steady, high all the time'.
Because we check his oxygen saturations and only give him oxygen when he needs it, and then give him what he needs rather than lots all the time, the overall amount is low. But this doesn't fit the paperwork. (On this argument, no-one needs a stomach as they don't eat all the time.)
Eventually, after multiple phone calls and metaphorical head banging on virtual brick walls, sanity - or a crude approximation of it - prevailed. We can keep things much as they are and get rid of some stuff they supplied that we don't use. If we hadn't argued, they would have turned up and removed the concentrator - some people aren't as bloody minded as us and might have let them - please let this not have happened.

We don't need this. This is paperwork driving treatment. But we now have to justify the air he breathes.

PS This is what happens when health services get contracted out and it makes me very cross. We could have avoided this 'problem' by simply letting the oxygen run unused - but in our innocence we thought that would be wasteful.

Wednesday, September 22, 2010

Personalisation - by order

As a carer, I've just received a copy of a presentation given by our local head of commissioning on the way forward for personalisation, locally. Afraid my worst fears were confirmed - not so much by the content, which was the usual '7 easy (!) steps to a personalised service' type, but the order. The most worrying thing was that step 1 was 'how much money you'd get' and step 2 'what services you can get' - so they decide how much you get before they decide what you need - again.

They really don't get it - personalisation is meant to be about the right service for you, not how much can they keep the service from costing. I'm sure they'll come back saying 'Oh, it's not meant to be like that' but it's the attitude and the fundamental mindset that always puts the cost before the service. Personalisation is meant to be about services but the evidence seems to be that it's really about 'personalising' service cuts.

Tuesday, September 21, 2010


A set of disconnected questions -

We got a break last week - at our own expense and facilitated by our own efforts. First for a very long time. I seem to remember the LibDems had a policy of one weeks break for all carers - but it's all gone quiet now they're 'in power'. I don't suppose it's something they intend sticking to as it would seem to line up well with their best mates 'Big Society' drive .... or am I just being silly?

Anyone see the article on two disabled people who died after being left in a van for 20 hours because their care home owner forgot about them (in Spain.)? Grauniad article at Of course it couldn't happen here .... and people with a learning disability couldn't die of neglect in hospital (see Mencap report), or be driven to suicide by antisocial neighbours (see any newspaper in last few months) .... or could it?

Am I alone in feeling that we're being set up for a major kicking? The cuts haven't hit yet, but we keep being told they're coming. It feels very like, not only are they going to be bad, and aimed at the most vulnerable (bankers have the resources to fight back) but they want to be able to say 'Well we told you they were coming.' Warning someone you're going to kick them, doesn't justify the kick .... or in this surreal world, maybe it does?

Monday, September 20, 2010

Thanks for the care

We've had a break. This is a big event - a week away in another part of the country without most of the responsibilities or looking after our son. Well almost - we could only get a one week, and we didn't know until a day or so before that we would be able to go, and we did need to ring in to support/advise every day. But we did get away, got some relaxation and rest.

Fortunately, his chest behaved itself and we didn't have to come back early to sort out any critical issues. (we've had to in the past.) Thank you to the nurses and care provider organisations. I know it's their j0b and they get paid but they don't have to do it, the pay isn't that great and they do care about him - it's not just a job, and we're very grateful. They are good people.

I suppose this can be seen as an anti-rant, but there's a real danger the work these people do is taken for granted - it shouldn't be. I know we do his care for nothing, but if he wasn't disabled, would I do a job like this when I could probably get paid more doing something 'valuable' like banking. They do it and ought to be recognised for that. Thank you - you know who you all are - and we do appreciate you.

Thursday, September 9, 2010

Every breath you take

In case you were wondering - my son is improving - the chest infection looks like its cleared. His chest expands and contracts with air - it's called breathing, and it's great and we don't take it for granted.

He's still tiring easily but he's taking an interest and more awake than he has been, more of the time. As you'll have noticed on recent posts, I can now get back to being a pain in the neck of the health and social services apparatus because the issues haven't suddenly gone away - until next time he's ill. (I don't think even they would want my son to be ill just so they could shut me up for a bit - that way lies paranoia... )

Jewel theft

Anyone who has a child with a learning disability knows he/she gets less good health care than the general population. They don't always understand that pain isn't normal and can often have something done about it - and they often can't communicate it until it gets extreme. Well now research shows, it's official. Prof. Emerson and Dr. Baines at Lancaster University have just produced a report 'Health Inequalities & people with learning disabilities.' that spells out how and who are affected - and how poorly these people are served. They die younger, have more illness and the current health service isn't responding proportionately. It may not be news but it is true.

An personal example -
We've watched (on the ward) people with learning disabilities being admitted to hospital needing a gastrostomy (feeding tube) replaced. It actually takes 15 minutes and doesn't need a doctor or even a qualified nurse - I've done one myself and my wife is regularly fallback and helps train nurses in this procedure. It has to be done promptly - because all the persons feed, liquids and medication go down it, and also because if it isn't, the hole into the stomach closes up and needs an operation to reopen it. We watched one learning disabled lady unecessarily admitted to hospital and not get hers done for four days - no food, no drink, no epilepsy meds, much distress and a number of complications - I don't know if she had to be operated on. There was no one trained for this procedure on duty over the Bank Holiday.
I didn't stand idly by and just watch, but when I did comment it was made very clear to me that it was none of my business and our own position would be affected if I took it any further. We were discharged later that day.

I've mentioned elsewhere on this blog how inadequate hospitals are at dealing with disability and how they put vulnerable people at risk. I don't blame the individual doctors, nurses and nursing assistants - I blame a 'one size fits all' system with a 'tick box' culture. I grew up with the NHS as the crown jewel in a welfare state, with decent health care free to those who needed it - somebody stole the crown jewel and replaced it with a very poor paste fake - and I want it back.

Wednesday, September 8, 2010

Plea for support

I'd just like to ask anyone reading this to consider supporting the Mencap 'Changing Places' campaign. Not about cross dressing or Andy pretending to be disabled on TV - simply trying to get places where people who can't use a normal toilet can get changed without having to go home early. The website is at if you want to know more.

I know there are cuts coming but I refuse to stop pushing for a better life for disabled people because the politicians have decided we're all going to suffer. Whatever the economy does, it isn't right that we have to change our son on the toilet floor. It's not dignified, it's not hygenic and it's not right.

If you know a councillor, tell them - if you are a councillor, provide one. Please.

Tuesday, September 7, 2010

Megaphone diplomacy

I have to say something about the 'coming cuts'. They worry the hell out of me. And the only thing I can do about them is refuse to accept that they are inevitable.

People with disabilities and their carers certainly aren't to blame - they haven't enough money to indulge in risky investments, property speculation or spend beyond their means (they were too poor to be lent money anyway.) Yet somehow the likes of Mr Diamond at Barclays, gets a new job with £11m.
OK, so life's not fair.

But spending money on care and people with disabilities should help us out of the recession. Carers, paid or unpaid, have such low incomes that any money they do gets spent directly on necessities - and so provides employment for others making, distributing and selling basic goods. It doesn't get frittered away into sub prime loans, hedge funds and dubious stock futures. And it's not like we're asking for more, just don't take away the little we have. (And we should get much of the money back when the government sells the banks off again.)
OK, so life's not rational.

But if something is unfair and daft - somebody, somewhere has to say so.

These cuts are unfair and daft.

Anybody got a megaphone?

Thursday, September 2, 2010

Bit of a worry

4:45a.m. phone call. Adrenalin wake up. It's OK, but he's started fitting quite a bit and new nurse on first lone night shift, so wife goes over to support. Glad she rang - rather a broken night than a fits out of control or a nurse who isn't happy with his care.

So, wife goes over there and I get to stay here sweating (one parent is support, two is pressure.). I know she has the harder job but it's still hard waiting to hear he's settled - or not. No point sleeping now - not that I'd be able to.

I know he'll be OK, he's done this lots of times. It's just the not knowing doesn't get any easier. I should see this as an opportunity for 'spare time' but too hyped to do anything productive.

Sleep well it could be a good sunrise.

Monday, August 30, 2010

Nursing by numbers - sorry, wrong number

In a rare idle moment, I saw this article on the BBC news website It's all about fears that elderly people getting malnourished in hospital. I'm afraid it got me rather angry. This is simply a different manifestation of what Mencap found in their 'Death by Indiference' report on people with learning disabilities in hospital. What really got my ire up was the perennial assumption, seemingly by all concerned, that this could be solved by monitoring and procedures - introducing red trays etc. for people at risk.

Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.

Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.

I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'

Rant not over - it's not over until the thin lady dies.

Saturday, August 28, 2010

Beating people can be good

I don't think I'm a control freak, but I'm probably not the best person to judge that (or if I am, I probably am the best judge!).  But letting other people take responsibility for my son, and not knowing how he is when he's ill is really hard.  As I've said before, we have a really good nursing team, but he needs a lot of chest physio just now to prevent the infection re-consolidating.  They're good nurses but variable at doing physio, so we find ourselves going in, even when he's not officially with us, to do extra physio and PEP.  We try not to offend them but I'm afraid a bit of irritation with mum and dad is a small price to pay for an uninfected chest.

He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired.  The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical.  Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.

PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections.  On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently.  It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs.  It doesn't shift the debris - that needs something physical, like coughing or physio.  I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs.  I know physio is often prescribed, but the amount is usually trivial and not available at weekends.  I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).

Wednesday, August 25, 2010

The Big Issue

Daren't comment really, but son's chest may just be improving a bit. Antibiotics down to one - I think that's making him more comfortable. Intensive PEP mask (Positive End Pressure) physio and lots of 'rebound' therapy (specialist physio on trampoline) should stop it re-consolidating. He's certainly been less washed out today. Still too tired to do more than a couple of hours of anything but he did get out to see his friends today.

Apologies for not commenting on 'bigger' issues - I'm sure things are happening on the national policy front etc. but when things get like this, I'm afraid there is only one big issue for us - life will still be there when we come back to it, and if it's not we'll deal with it's absence then - or not. (I really didn't expect to get all metaphysical but the residual gray gunk that passes for a brain these days sometimes goes off on one itself.)

Monday, August 23, 2010

Everyone worries about their children

The chest goes on. He's really taking a long time to pick up from this infection. We're still doing whatever he enjoys - he went to a multi sensory environment he loves over the weekend and although the trampolining is really physio, he enjoys it so much we're making sure he gets as much of it as he can. He gets weary though and is too tired to do much. One session every couple of days takes it out of him and he has to sleep a lot to recover, on oxygen much of the time. He is a little better each day, and on the strength of that, the doctor has reduced him to one antibiotic. It does look like he's pulling round but times like this always remind us that it's his chest that is the real high risk factor, with his fits a slow second.

Sleeping and waking times for him are 'interesting'. He sleeps whenever he wants to, regardless of day or nightime. He has been known to sleep solidly for 48 hours and then stay awake for the same amount of time. He'll often be awake during the night and asleep all day, we've tried to get a pattern worked out but it really is random. One particular feature is that he actually has three 'phases' - awake, asleep and 'aggressive' sleeping (when he has muscle tone, but refuses to surface whatever stimulus you put in.) Unfortunately there also seems to be a fourth phase emerging where he goes into such a deep, unrousable sleep that his oxygen saturations drop alarmingly - we're hoping this is just a temporary feature of the chest infection and will clear as his airways 'block off' less with the secretions.

Thursday, August 19, 2010

Unsung, unpaid - unstinting

I'm embarrassingly aware that there's someone I occasionally mention here who gets limited recognition for the major part she plays in my sons care. My wife has looked after him as the main carer for 27 years - I really just do the fetching and carrying and some of the unskilled mucky jobs. (When a nurse lost her new gold bracelet, it was my job to go through the clinical waste bag until the glint of precious metal became visible through a discarded protective glove carefully packed away inside a dirty continence pad - who said caring can't be fun.) Before the kids, my wife was a very well qualified senior nurse and now effectively acts as 'clinical lead' in most of our sons care, though many of the professionals with less time alive than she's had in nursing, still find it either difficult to acknowledge her skill or feel threatened by the depth and breadth of her knowledge. She still organises his drugs, does much of his care herself and takes over completely the shifts they can't cover, etc. etc. etc.. I help out as much as I can but she's the real lynch pin of this operation.

We've been told by medics, in the nicest possible way, that it's her fault he's still around. Before we had the care package, she worked 24/7, sleeping only in patches. I did what I could to help and at least I got to 'escape' to work during the day - she never had that luxury.

And for all this, she gets paid nothing. Now we're both retired (officially) even the pittance of her Carers Allowance has been taken away - it wasn't much but it did recognise what she did. Nothing in the care changed on her 60th birthday, but she was no longer officially valued. It doesn't make us that much poorer financially, but I really resent this - she's massively undervalued as it is. Oh, and we still have to fill in all the DWP forms every month (despite not getting the benefit) in case it affects his 'passporting' to other benefits and the empty lever arch files at headquarters start feeling peckish.

Wednesday, August 18, 2010

Beating his chest

Chest infection continues. Bit of a worry really as he still has some spots etc. that usually clear up with the antibiotics - doctor feels he's quite run down. Presumably infection main is viral and antibiotics are just breaking up any bacterial secondary infections. It's up to his immune system to clear the viral part. Physio helps clear gunk - particularly the stuff he gets on the trampoline a couple of times a week with ordinary and PEP (positive end pressure) mask in between.

The physio he's had has been a literal life saver as the recurrent chest infections would have taken over long ago had it not been for this progressive and intensive physio regime. Unfortunately none of it is provided by the NHS - the charitable service provider that does his day care employs a specialist physiotherapist full time for the people they deal with and it's pretty much down to him - we owe him a lot. When he took a well deserved holiday, all the NHS could provide was two basic sessions a week and they were unaware of PEP and unable to do the trampoline physio. The people were well meaning and good as far as they went but it worries me that the mainstream service is so poorly trained and overstretched these days.

Back to relying on charities - come back the workhouse, nothing is forgiven.

Saturday, August 14, 2010

Life goes on

Apologies for absence - life sometimes takes over.

Son's chest infection appeared to be improving but reconsolidated when we changed antibiotics. Not back to square one but definitely didn't pass 'go' or collect £200. Back on the x2 stronger ones and looks like its helping - going by the muck coming up.
Meanwhile, had to take out a couple of days to help with major life changes/stresses for daughter 200 miles away. She's as important as he is and it feels bad giving him all the attention. She is incredibly self sufficient and deserves better.
Meanwhile again, storm in teacup about paperwork/admin. for a minor drug has blown up into a storm in a swimming pool, with much tears and stress it is now down to a storm in a large bucket - hopefully. 27 years of care experience counts for very little if the paperwork doesn't fit these days.

All this goes to prove that life does go on - it just isn't a lot of fun sometimes. (Oh, and on our first evening out for about a month, we won the pub quiz - so there must be a god somewhere, I'm glad he has the same sense of humour as me.)

Friday, August 6, 2010

Not very happy campers

It's been a fairly torrid time over the last fortnight. Quite a severe chest infection and he's still on low level oxygen, but seems to be on the mend. We've had to nurse him ourselves at home, largely due to staff sickness meaning we didn't know whether the next shift would be covered or not. In some ways I don't mind us being the fall back - it keeps us close to his care and someone has to provide the continuity, but it would be nice not to have the continual uncertainty about how many shifts we were covering back to back. We get exhausted increasingly quickly these days and are finding we need more days to recover from what we could have done without too much trouble 10 years ago. Some of it's the physical strain of 'moving and handling', some of it's the nursing work needing concentration on medication and treatment but a significant part is simply having him there 24/7 with or without other professionals working in our home. There's no privacy and I begrude that. It isn't any fun camping out in your own home - but it is necessary.

Monday, August 2, 2010

A minor irritation

When we took son to the hospital last week, he had to go for an x-ray. This is always good for a laugh as his spine shape and heart totally obscure his left lung - where the problem always is, and the hospital can't get the plates in between him and his moulded wheelchair - the shape of his spine means lying on the bed is out.

This time was even better. The Medical Assessment Unit was heaving and grossly undermanned. But they had to call a porter (who wasn't familiar with driving his attendant controlled, powered wheelchair) and insisted on sending a nursing assistant escort as well (who hadn't been told why she was needed). So off we trundled in convoy, with me driving the wheelchair, wife managing the suction, porter in front feeling like a spare part and nursing assistant behind wondering why she was there. They were very nice people and it wasn't their fault - but we really did know where x-ray was.

Why they hadn't provided a siren and a couple of motorcycle outriders was not explained.

Going with the (oxygen) flow.

It's been a heavy couple of weeks but it looks like we can see a bit of normality coming back. His chest has been two steps forward, one step back but he went quite a few hours off oxygen this evening without his oxygen saturation falling much and seems really alert just now. The consolidation on his lung seems to have cleared - the steroids have finished without a gastric bleed and his antibiotics finish tomorrow, so we'll be concentrating on physio to keep it that way. (His own physio is on holiday but still texted us from the beach to see how he was - we told him to get a life and a tan. He's a classic example of a brilliant, caring and dedicated professional making up for the deficiencies of a 'one size fits all' system.) Fits don't seem to have kicked in this time, thankfully.

Staffing also looks like it's starting to settle with people gradually coming back to work after various sicknesses. He's still at home with us but we're looking at possibility of going back to his own house in next few days if he stays well - assuming there are enough nurses to cover.

It's still a case of hoping the light we can see is the end of the tunnel - it could still be an oncoming train.

Saturday, July 31, 2010

Still falling - it's a long way down

We're at last getting to grips with sons chest infection. IVI (Intra venous infusion - a drip) antibiotics combined with steroids seem to be making some headway but recovery is very slow.

Meanwhile, nurses are dropping like flies. Some seem to have same flu like infection though not as bad obviously. Net result has been no cover so he's at home with us, sometimes with, sometimes without nurses. All very unpredictable and wearing. Needs a lot of care when like this - physio, suction, checking oxygen levels etc. on top of normal stuff. Oxygen saturations have been quite poor so using oxygen concentrator most of time at present. Sleeping a lot just now as seems exhausted with coughing, but at least it isn't a nasty green colour now.

A nurse we thought was still ill has recovered so we're going to get a decent sleep tonight (as long as he doesn't throw another 5a.m. 'wobbler'.) Everything else on hold.

Wednesday, July 28, 2010

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.

Monday, July 26, 2010

Falling over in slow motion

Difficult time to post - will probably do something more when time and problems permit.

Wife largely, though not completely, recovered from hospital.  Son has developed serious chest infection we're only slowly getting on top of (hope not to be a repeat of Jan/Feb/Mar) - one result was a 5a.m. rush over to help staff on duty.  Same infection that gave him chest infection has given care staff 'flu' symptoms so major staffing gaps.  Fall back plan for covering staff sickness has fallen back and fallen over.  Carers not allowed to be ill - we have same infection but don't get time off, so now nursing sick son at home whilst ill ourselves and one of us still recuperating from major hospital episode.

Life's a bitch sometimes.

Tuesday, July 20, 2010

Normal - ish service will be resumed

Apologies for my absence. My wife had a sudden hospital admission, so along with shopping, meetings and other non essential activities (unlike caring, cooking, visiting hospital and housework), the blog had to stop for a while. Normal service probably never existed, so can't really expect its return any time soon. Anyway, she's now recuperating at home and supervising care services and domestic activities - it's at times like this I start to realise how little I actually contribute.

Meanwhile, our sons services sort of carry on. A nurse with one service calls in sick, so the other service picks up slack because the contingency plans are still not working. He missed a bit of his activity that day but got an unexpected lie in instead, otherwise he seems to have sailed through things reasonably - including a visit to his mum in hospital, which he slept through 80% of. Some care quality issues with an agency nurse (some are great, some not so great.)

This afternoon it looks like he's developing another chest infection, so back on the antibiotics. He's done really well lately, with a four/five week break since he last needed them. It may well explain why he's been having a few more longer fits at night that we were starting to get concerned about. The discomfort would have been enough to trigger them.

Anyway, back on the treadmill - need to find out why newly appointed nurses still not coming on stream - probably CRB checks.

Tuesday, July 13, 2010

A bit edgy

Had a short, sharp reminder of how quickly things can change over the weekend.

Our son had had a pretty good day, a bit sleepy, but it was weekend and he is 27, so a bit of a lie in shouldn't be too worrying. Took him to a local event and had a pleasant chill out in the garden afterwards, and then some TV in the evening. Then late that evening, he had a major fit, not unusual, he went quite blue with it, again he does this sometimes, but we think he must have aspirated (breathed in some of his secretions) as his oxygen levels dropped through the floor. We spent the rest of the evening trying to get them back up and stabilised - we have an oxygen concentrator etc. We think he'd aspirated and the secretions were 'blocking off' a portion of his lung. He did settle to a reasonable level eventually, but it took some time as he didn't seem to want to cough properly. Kept him on oxygen overnight and he's been fine since.

Had to fend off all phone calls etc. so some people probably think we're a bit rude. It's times like this that remind us how fragile things can be.

Friday, July 9, 2010

The devil in the detail

Ordinary problems can so easily become major issues if you've got 'complex care needs'.

We've lived in dread of the hay fever season for many years. If our son was 'ordinary' it would be a significant inconvenience but as he over secretes with the pollen, he can't just swallow it or blow his nose like you or I. There's a 50/50 chance the fluid will go down his airway - and that's a real problem. He starts to choke (that's one reason why we need to suction him, and contributes substantially to his recurrent chest infections.) and that distresses him, so he has a fit (and we need to deal with that if he has too many or they last too long.) so simple hay fever gets to be major intervention.

He's developed a blocked sweat gland under his armpit. A bit painful if not controlled but no big deal. Unless of course you can't tell anyone it hurts until it becomes an obvious lump, and you start fitting with the pain. So we treat it with antibiotics and panadol. Now if it gets established and too recurrent, an ordinary person would just have surgery to remove the pocket, but because of his fits and his damaged lungs, he's a poor anaesthetic risk. Any surgery then becomes a major life risk. So that's not an option we want to think about. One day we may have to, but for now the antibiotics and pain killers work.

These are just details in his condition, but the devil really is in the detail here. And there's some little devil going to get a pitchfork right where it hurts if I finish up in the furnace.

Thursday, July 8, 2010

We are not alone

The lady who went on hunger strike (Mrs Cavill-Burch) over lack of care and support has my sympathy. I can hear the public now - 'this can't be happening in our society in this day and age' - but it can, and it does. It did to us for 19 years. We have a service now, but like her spent many years suffering acute sleep deprivation. At one point a District Nurse confiscated our car keys as she felt we were too tired to drive safely - but it didn't get us a service. We didn't try hunger strikes - just didn't think of it - maybe we should have. We got our service after much shouting, embarrassing the local Authority and NHS in public and setting it up ourselves with the help of two local charitable providers. I suspect there's little help we can offer Mrs Cavill-Burch other than to say the publicity, though painful, may be enough to start the services off, but it won't just happen. If we can help, get in touch. For news report see BBC at

This subject is being raised in Parliament on 13th July at the All Party Group on Learning Disability meeting. The Raising Our Sights report is being presented there and for once spells out how big and bad this issue is. There's a copy on the department of Healths own website at

We are not alone, we're isolated. There are a lot of us out there but we're trapped in our homes doing the care, and are invisible. And the services (NHS and Social Services) find us too difficult to deal with because it is hard. So they ignore us, in the hope we'll keep quiet. And on top of this - the cuts are coming.

Wednesday, July 7, 2010

Not Valuing People

Just a heads up on a more than strong rumour.

If you have any involvement in the world of learning disabilities, you'll know that the Valuing People organisation was set up to oversee and ensure people with learning disabilities got good quality services and to promote best practice. It was the one 'official' champion that carers and people with learning disabilities could quote in the face of poor or reducing services. Their website has carried the 'this is under review' government cuts health warning for a while, but I understand that yesterday, staff at all levels, received redundancy notices.

The greedy bankers got us into this mess, it's going to be the suffering of people with disabilities that are forced to dig us out.

Thursday, July 1, 2010

Seeing the light

It's a strange thing letting go. We've been building up my sons care package gradually for about 8 years. Prior to that we did almost all his care 24/7 ourselves (not necessarily out of choice but because he was felt to be too difficult to cope with by the places we got referred to.) Before that all we really got was a few days a year respite from the local childrens hospice. So we went into partnership with a couple of charitable provider organisations and started the 'shared care' with one or two days a week. They were good and we gradually built it up until this year he's only with us one or two days a week. It's been long, hard and involved a fair bit of friction at times (especially with the PCT and Social Services) now we trust them and I think they trust us.

The real payoff here is that we can risk dying now. Getting ill hadn't really been an option before. And I don't want my daughter to feel she has to take over if anything happens to us - the damage it's done already is more than enough. (S - if you read this, we know you could do it, we just don't want you to have to. Your life is just as important as his.)

We've recently made the transition to not doing the nights shifts - even when he's at home, one of the nursing team now take on his night care and we camp out in the spare bedroom. This has actually made much more of a difference than we expected and changed things in what for us was a fairly surprising way.

Up to recently we had him at home with us for a continuous row of shifts for about two days and nights at a time (plus of course any 'contingency'). What this meant was that, even alternating the waking watch night, we were so tired that we didn't have the energy to do much with him during the day apart from his care, and we spent all the time in between just catching up on sleep until his next visit.

Now, we're awake and alert when he's with us and spending the time in between not just recovering - and everybody's quality of life is better. We have the energy to organise and do things with him we never considered before, so his time at home is much more interesting. We've found ourselves taking him out with the nurses in between times as well to do fun things - and it's good.

We're even managing to take a few days out to visit my daughter. I'm finding it difficult to remember what it felt like even a few years ago when we were locked into full time continuous care and staying awake was an effort. The light at the end of the tunnel looks good - I just hope the spending cuts don't turn it into another oncoming train.

Sunday, June 27, 2010

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.

Friday, June 25, 2010

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 'Prespectives on Care'. I think it's interesting, but as I contributed to it, I would, wouldn't I.

Thursday, June 24, 2010

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.

Wednesday, June 23, 2010

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.

Tuesday, June 22, 2010

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.

Sunday, June 20, 2010

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.

Thursday, June 17, 2010

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.

Thursday, June 10, 2010

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.

Tuesday, June 8, 2010

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.

Monday, June 7, 2010

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.