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.

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.

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.

A voice from the wilderness

In the spirit of the new Health Minister's promise to read one in fifty, randomly selected letters to the Department of Health, I've e-mailed him (Andrew Lansley, Health Minister and Paul Burstow as Junior Minister for Care Services) suggesting they follow this blog to get a feel for what it's like on the front line. I just hope they don't simply try to use it to try to discredit the concept of Personalisation - you'll be aware that I'm not a big fan of Direct Payments and Personalisation myself but that's not because the ideas are bad, it's simply that -

• Direct Payments aren't right for us - we spend all our time doing the care and don't have the time left to do all the admin/staff stuff etc. involved. They are great for some people.
  
• I feel Personalisation has been hijacked as a 'one size fits all' solution and is being used simply to cut services and costs by Local Authorites - as often Conservative as Labour (or even Lib Dem). It's the way it's being bastardised in use, not the concept that is wrong.

It'll be interesting to see if I get any reaction - here's hoping. If just a few people in the Department have a surreptitious look now and then, it will have done something for awareness - and if you're doing it now - welcome, just check over your shoulder!

Once more into the breach dear friends

So what happens when a nurse, for very good reasons, has to ring in just before her shift to say she won't be able to get in? Well, in an ideal world there would be a contingency plan - and there is - and it doesn't work - again! This time we didn't step in to fill the breach ourselves, as usually happens. Because nobody told us it had happened - we only found out when we rang to see how he was. There was a fallback but in our view it was inadequate, so brown stuff hit fast rotating object again. Fortunately all was well and he behaved himself for once.

Our package of care predates the 'Personalisation Agenda' - it doesn't need things like Direct Payments to get a Person Centred Plan, even under the old systems - they just make it hard (translation - impossible). If we'd had Direct Payments we'd have had to organise all this as well as doing his care and I don't think we could cope with that level of admin. as well as the medical etc. care. There's no allowance for recruiting, staff admin., contingency cover organisation etc. - Personalisation for us would mean care on the cheap (for the authorities). It would save them money, because we'd have to do the extra work. The reality would be that we'd step in all the time - unpaid.

Saturday, Saturday

Last Saturday will have been a very productive day in terms of quality of life for my son - I hope. We went on a 60 mile round trip to a swimming pool, an indoor ski centre and a shopping centre. He didn't get to swim or ski but he did get to people watch, which he enjoys a lot. (He's not very PC and liked the hordes of young women buying clothes and the semi naked statues.) We did also manage to establish that he will be able to swim at the fun pool and will be able to try out skiing. We'll have to take our own equipment - portable hoist, specialist seating system and 'wet' wheelchair to access these facilities. We'll have to book well in advance so the right instructors are there and go down in two vehicles (one for the people, one for the equipment.) and it is quite a long way to have to go on a recce trip.

These are things non disabled people take for granted, they can just turn up at their local pool etc. and expect to go in - but of course these supposedly 'universal' services' much mentioned in the Personalisation agenda are only available to people with a disability on a much more limited basis. Still at least the people we spoke to were positive about letting us in - they didn't invoke the dreaded risk assessment or fire regulations to exclude us. they should have had the right equipment so we wouldn't need to bring ours but the positive attitudes were enough to get us on side.

Slight downside - the hygiene standards at the pool look a bit 'iffy' - while we were there, one child who had obviously just been sick in the pool, was ushered into the loos to carry on being ill - and then escorted back into the pool by the staff!

Personalisation - targetted cuts

Personalisation is like Care in the Community - it's a great idea until the County Treasurer gets hold of it - and uses it to implement service cuts. Our Local Authority has used the Personalisation RAS (Resource Allocation Model) to impose cost cielings on care packages and taken on cost cutting consultants to target the most expensive care packages (the most needy) for cuts. They get paid a percentage of the cost savings they make - so no conflict of interest with providing a good service there then! Unfortunately the politicians seem to have bought the cosmetics of Personalisation - one in a million has used his Direct Payments to get a dog as a companion, so he doesn't get depressed. The bulk of people with disabilities need more mundane things like a decent wheelchair or enough care/nursing staff. But these tend to cost more than dog licences so they become targets for cost savings. To the client and carer, Personalisation in practice looks more like personalised targetting for service reductions.

PS The RAS is very careful to take out the cost of carer provided services - carers are only seen as valuable when they save the Treasurer money - their service isn't valued at all.