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.