Thursday, October 28, 2010

In the real world

Meanwhile back in the real world. (These days I tend to regard the world of CQC, DLA, Care Commissioners, etc. as a separate Alice Through the Looking Glass world - unfortunately despite it's surreal nature, it has a real impact on our lives)

Our son is quite good at present. The Oxygen saga has reared its head again - error on prescription means the engineer has limited his concentrator to minimal, but we're hoping to sort that out on Monday, meanwhile bottles will have to suffice. His chest seems OK at present, the high winds still precipitate his asthma, but the PEP mask therapy seems to be quite 'productive' in both senses - it seems to be working as a therapy and it appears to be clearing gunk from his peripheral air sacs, particularly the one prone to consolidation. It's also a lot less intrusive than 'beating'.

Fits are about average. He had a urine infection earlier in the week but the antibiotics seem to be clearing it up.

Getting support for the Mobility Allowance issue - daughter being particularly helpful in a very practical way - thank you.

Life this side of the Looking Glass on a relatively even keel - but I don't think the glass is shatterproof.

Tuesday, October 26, 2010

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.

Cutting those who can't fight back

It appears the Mobility Allowance cut applies to all people in 'residential care'. This is a major cut, £20 or £40 odd pounds a week per person. Lots of disabled people will lose their Motability adapted vehicles, some people use this for motorised wheelchairs as they can't self propel. One distressing aspect of this is that it was referred to briefly in George Osbornes statement - a passing comment referring to 'equalisation' which was only elaborated as a cut to Mobility Allowance about page 50 of the Treasury statement.

My request to write to MPs was not on my own son's behalf, though it does affect him. It was to stop this being enacted for all disabled people getting Mobility Allowance in 'residential care' - this is a standard care model for many disabled people living in the community - particularly multiply disabled, people with complex care needs and learning disabilities. These people often get only £20 a week 'spending money' because their care is paid for. Mobility Allowance allows them some independence - until this takes effect.

Friday, October 22, 2010

Stay at home

Just digesting the news that the governments spending review will take away my sons Mobility Allowance. He's officially classed as living in a one person 'nursing home' when not with us, so will lose one of the few benefits he gets. (As a nursing home he doesn't get Income Support etc.) His mobility Allowance bought and runs his wheelchair adapted van. He needs this to get a life, visit relatives, come home each week etc. with all his equipment, so public transport not an option.

Please speak to your MP about this. Even if it's Mr. Osborne!

I don't see any bankers under house arrest - that's what he's condemning disabled people to by taking this away.

Tuesday, October 19, 2010

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.

Sunday, October 17, 2010

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.

Friday, October 8, 2010

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.