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.