Not fit for purpose

How many more Winterbourne Views, Wirral Borough Councils, Beech Tree Schools and slapped older people does it take to convince the 'powers that be' that CQC isn't up to the job?

Reducing it's staff, appointing senior people from authorities under investigation themselves, and giving them wider and wider areas of remit with no more resources, can't be the answer. There is an urgent need for a replacement body focused on ensuring quality - not an incompetent watchdog focused on the least bad care.

If ever there was a case for Person Centred Planning this is it. Lets have a watchdog that is properly resourced that rewards good practice, that uses the army of people who understand care - family carers, and recognizes the contribution they can bring.

We need the whistleblowers - but they need to be taken seriously.

We need inspections - not a reliance on self assessment checklists.

We need best practice - not a failure to even prevent worst practice.

We need something other than CQC that can help the good care providers get better models of care accepted by bureaucratic local authorities as well as prevent poor providers abusing people. If there are no carrots, the stick just becomes something to be avoided - and poor providers will always be able to hide their bad practices in a situation where care happens behind closed doors.

Care can be good, but as constituted at present, CQC won't make it good.

Look in your own back yard

It always surprises me when NHS and Social Services officials look disbelieving and stunned when someone points out to them exactly how disabled People with Profound and Multiple Learning Disabilities are, and how many of them there are in their area.

At a meeting today where this was spelt out and the 'officials' reactions were very sympathetic, but they were surprised. They shouldn't have been. In the audience (general carers in the county including elderly etc.) were parents of at least four people I recognized who have these complex care needs. Things like being non verbal, unable to walk, unable to swallow, needing oxygen and/or airway protection on top of learning disabilities, epilepsy etc. etc.

They should know. We've been telling them for years what the issues are and the Raising Our Sights report made it official in 2010.

I'm fairly convinced that the real reason is that they are expensive and difficult, so they get passed on and on until they get dropped or a crisis takes them out of the account. This may be their death, or their being shunted into the back room of a mediocre nursing home where they're left to scream with the radio turned up so no one can hear them. (This example is real - the lady in question was 'rescued').

I don't think the officials are bad people. They just don't want to believe they are failing these people so spectacularly.

And saying 'I don't know how you do it.' sympathetically, to a carer who is doing it 24/7 isn't even patronizing - it's insulting.

Demonizing disabled, demonizing carers

I can almost live with Matt Lucas and even Ricky Gervais - their comedy isn't helpful, but it is after all meant to be entertainment and not taken seriously - them or their comedy.

I find it much more difficult to accept the sort of comments that at least one (Labour, for god's sake) councillor is on record as saying - and I've heard similar from a relative. That families with disabled children are getting their houses adapted with grants so that they can increase their property values. It's not just crass and incorrect, it's another step down the road of making it acceptable to brand disabled people and their carers as scroungers. As though we'd accept having a child with cerebral palsy, or being born with a learning disability in return for money. I imagine there are politicians out there who would sell their body and soul for cash, but I don't know any people with disabilities or their families who'd accept being paid to have life limiting conditions. Politicians shouldn't judge ordinary people by their own twisted standards.

I would have given any amount of money not to have needed to adapt our house so we and he could cope with his disabilities. I'd still like other places to be accessible and have spent lots of my own money on things we/he needed which non disabled/non carers would have used for holidays and surround sound TVs. Being disabled costs money as well as being limiting in it's own terms. To suggest we like being disabled/carers for financial reasons illustrates the profound lack of understanding of what disability means in the real world for real people. It's not that we don't care about money - we're forced to. But it isn't our first, or probably second, third or fourth priority. Our own priorities went something like - first, making sure he could breath, second, keeping his fits to a minimum, third, making sure he was as comfortable as possible, fourth, trying to get him as good a life as possible. We needed money to do some of these things but the money itself isn't that important.

These sort of comments make it acceptable to discount people with disabilities, make it acceptable to slag them off and ultimately make it easier for politicians to make cuts to services for disabled people.

I know the councillor in question has since apologized - and no doubt my own relative would say of course he didn't mean us - but the damage is done.

Tax credits for carers info

If you're a family carer who works limited hours and gets tax credits, you may have had a letter from HMRC/tax office saying you're going to lose some tax credits. Be aware this may be incorrect. I don't understand the full details (as we were on state pension we didn't get carers allowance or tax credits) but Martin Lewis of BBC's Money Box programme has the details. The relevant bit is about half way down in the 'Do you qualify section?' and involves carers exceptions. There seems to be a 6th April deadline, so you need to contact HMRC quickly if this affects you - it could be £'000s a year.

Hope this helps.