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.

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.

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.

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.

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.

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.

Good news, bad news

The good news is - there are two bits of good news.
The long promised shoes have actually arrived. My son, after 9 months, has a pair of shoes that don't further damage his feet, complete with soles, all the way from Sheffield via Lithuania. I'd like to drink champagne from them but don't dare do anything that might damage them.
Also, we've had a reply from CQC to say they've spoken to the member of staff who agreed his care package originally and although he doesn't fit the tick boxes, we can carry on with the package that works. Didn't need a meeting and they did listen - there are human beings out there.

The bad news is that the suction machine is still broken. Loan Store eventually sent a replacement for the obviously broken bit - at the third attempt, but didn't check the machine actually worked. It doesn't. There's obviously a more deep seated problem so back to the telephone again.

So, life in aggregate, is just a little less complicated than it was this morning.

Musings on hospitals and packages

Just been on a viral leafletting expedition leaving job adverts for nurses in places they might actually see them - I have to be circumspect about this - see previous posts. It felt quite strange going into hospitals on my own knowing I wasn't visiting my son, there for an appointment with him, collecting his equipment/drugs etc. I could do things at my own speed and not have to sit around in waiting rooms for hours. Odd how a familiar place takes on a different perspective when you're there for an unusual purpose.

Meanwhile, back at the care package negotiating table, we've decided to try and get CQC to meet us and thrash out the problem of re-registration forcing a deterioration of our care package. It's quite worrying how in awe of CQC people seem to be - to the extent that you can see the tone of fearful deference entering the conversation when people talk about them. I know they often hold the biggest stick possible to beat recalitrent providers over the head with, but in the end they are are just another public servant manned by human beings, so have a responsibility to be approachable. I suspect they are, so I've asked for a meeting - maybe they're reasonable as well as human(?) I'm very conscious that I'm in a priveliged position as a carer in things like this. I'm allowed to be stroppy where a service provider isn't - it's an odd role reversal for once.

If it's not broke, don't mend it

I'm just bracing myself for an initial meeting, doubtless to be followed by many others, where we'll try not to redesign my sons very good Person Centred Care package (that's taken many years to get in place). The new CQC has decided - without understanding the package - that it needs to review what CSCI very recently rated an Excellent package, and thinks that, because it doesn't fit their one size fits all tickboxes, it may be illegal. They don't seem to think there's anything wrong with the service, and nothing has actually changed (apart from their own administration) but we now have a problem.

His care is complicated, and difficult, and it isn't made any easier by being threatened that parts of it may have to be withdrawn for administrative reasons. There's quite a lot of stress involved in caring for someone with a life threatening condition and the sheer physical strain of what we have to do is itself extremely tiring. We could really do without these 'manufactured' problems. I'm sure the administrators involved feel they are acting from the best safeguarding motives, but from where we're standing (sometimes falling down due to exhaustion) it feels like the attitude is sometimes 'never mind the service, see how safe it is'. Real safeguarding would ensure my sons health and welfare was safeguarded, but it feels like the main thing being actually safeguarded is the legal back of the administration.

I know it's heresy to say anything against safeguarding after Soham and Baby P, but someone has to stand up and say safeguarding isn't everything. If the sins of the few are going to mean anyone with a severe disability doesn't get the service they need, something has gone too far. Neither my son nor I have murdered any children lately, but we're paying the price by having his health put at risk so that organisations that should be providing care, can never be blamed for anything. Bad things have happened - more bad things are happening to us as a result.

Care v boxticking

We've just had a meeting with one of the care provider agencies. Got a phone call on Friday telling us that although we'd been operating the service ina particular way for years, because CSCI(Commission for Social Care Inspection) has been replaced by CQC (Care Quality Commission), the service needs re-registering and lo and behold - it doesn't fit the tick box categories so one bit of it could be 'illegal'. To be fair, my son's package is complicated - but so is his disability. We're lucky that our service provider has worked closely with us to develop a very PCP (Person Centred Planning) care package - the trouble is that the commissioning, registration and inspection organisations don't really understand (and often don't care) about real people's needs as they don't fit the 'one size fits all' tickbox exercises they rely on. So next stop - meeting with CQC and others. My son will be there so they can see what they are talking about. I don't want to redesign his service to fit the inspection regime but that's the way we're being pushed - please don't get me started on 'Personalisation' - I'll do a rant on that later.

Just to illustrate the complexity - we have a 'shared care arrangement' with one provider doing day care, another doing his residential (he's a one person nursing home in a 4 person registered care home -he has 24/7 nurses when not with us), and we provide the rest (some of the care time and lots of other stuff e.g. equipment, drug oversight, care protocol negotiation etc.) His complex care needs include feeding regime (gastrostomy protocols), medication organisation, protocols, interventions, MAR (don't know what MAR stands for! - administering drugs) sheets, regular and PRN (latin for as needed) drugs, motorised wheelchair, very techy seating system, specialist physio, epilepsy and asthma guidelines, end of life care plan, communications passport (non verbal), traffic light sheets (for hospital admission), occasional oxygen, his own wheelchair adapted vehicle, special footwear etc. etc. Despite this he lives in the community and enjoys life.