Quiet, if not silent, night

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

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

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

(S)no(w) place like home

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

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

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

Merry Christmas - have a drink for us and enjoy.

Master of the (water) closet

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

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

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

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

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

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

The wonders of poorly made technology

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

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

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

From meetings to checklists

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

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

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

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

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

Oxygen and paperwork

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

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

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

Real Life

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

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

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

Immobility Allowance

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

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

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.