Wednesday, July 27, 2011

Nil illegitimo carborundum

I actually learnt Latin as a schoolboy - and that isn't Latin - but it does translate well. (For the non classical among you 'Don't let the bastards grind you down.')

Have just endured another 3&half hour meeting to assess nursing needs of our son as part of their review of his care package. Nice enough lady but she hadn't been given any of the documentation we'd specifically asked her to read before coming - result, had to go through everything that is 'wrong' with him yet again. It's depressing having to repeatedly spell out his 'problems' to every new face we come into contact with. As he was ill he couldn't get to the meeting - chest infection - so she hasn't even seen him yet. The saga continues - extremely slowly.

Meanwhile in the real world, his chest infection produces some really quite scary lumps from the consolidation on his lungs. The antibiotics are breaking it up, so it's a good thing really - better in the suction jar than on his chest, but I can't help thinking how uncomfortable it must be. And he can't tell us. We're now bracing for the 'scattergun' infections that tend to result from this break up of the consolidated infection. Last time he developed eye, urine and gastrostomy site infections. They cleared up after a week or so as the second round of antibiotics hit them but that doesn't make them any less painful/uncomfortable while they last.

Another current campaign of ours with Social Services/NHS is trying to get 'complex care' onto their agenda. If any of you have read the Mansell Report - Raising Our Sights, you'll be aware that 50% of people with complex care needs get no support and 80% of the rest feel the support they do get is 'poor'. We moved out of the first category after his 19th birthday and are now firmly wedged in the second.

On the practical front, more 'yellow cards' to the feed/gastrostomy equipment suppliers providing substandard equipment and abysmal service. Complaints duly entered and a strategy being developed for kicking these smug/complacent contracting monopolies where it hurts - hopefully financially, if not via publicity.

Lots going on - and we've also got a life to get on with - helping one relative deal with a major illness and another celebrate a major career milestone. I prefer life to meetings.

PS just discovered first 'scattergun' complication - on call doctor being consulted.

Sunday, July 24, 2011

Somewhere in a parrallel universe

Attended a 'Visioning event' put on by Social Services supposedly about what sort of service people with a learning disability would have in the future. All very pink and fluffy - until we started talking about what had been left out of the presentations. There had been no mention of the cuts at all, the effect these would have on existing care or the rising numbers of people with complex care needs. The few actual carers at the event (as usual 90% of the invitees were professionals - no detriment intended to the individuals other than the numbers balance) did manage to shoehorn these issues onto the agenda.

This is a Social Services authority that is making massive cuts over the next x3 years, increasing charges for services, reducing who it provides services to and has called all its learning disability care packages in for review to reduce their costs, and is facing a judicial review of the legality of both its cuts and its 'consultation' process.

A depressing session for it's lack of relevance to the real world. The trouble is, I had to attend and lose a precious half day (unlike the professionals, we don't get paid to be there) or there might have been something significant slipped through. As it was, if we hadn't spoken up the thing would have not even considered the 'elephants in the room'.

I left angry and stressed. I really don't need this sort of 'consultation' - if I'm going to be 'consulted', at least let it be about reality.

Thursday, July 21, 2011

Not playing catch up

Sometimes life catches up with you. Sometimes it looks like overtaking you and you race even faster to keep up. Right now I think I can still see 'life' (or a fair proximity of it) disappearing over the horizon, having sneaked past me while I was busy trying to keep up with practical things. If life is a race, I think I lost out in the early qualifiers - not really sure, someone kept changing the rules. I still seem to be in the race (often against my better judgement), I just don't remember signing up.

In real terms, our son has had another chest infection (slowly drifting into asthma but coming under control), my wife is slightly incapacitated due to a slow healing operation (so I've become a family taxi service), my daughter has just made a major change in her life (a good one that I hope I've helped with), mother and father still alternating with fragile health (mum's turn just now) and another relative is needing various assistances through a serious illness.

I think I'm coping but I could just be delusional and shellshocked. These sort of crises are actually easier to deal with than the intensive stress inducing and protracted processes of re-negotiating a care package because of cut backs in NHS and Social Services. This of course trundles on and we at last have been promised a meeting with an NHS representative who is deemed qualified to assess his health care needs. (Though I have some doubts as she's meeting us, but seems not to be that interested in seeing my son - the one who actually needs the care. She will meet him as we refuse to let this become another paperwork over the cracks exercise. We will be bringing him to the meeting however inconvenient - for her.)

I've come to the conclusion that life is only a race if you agree to take part - right now life is over busy, but I'm going to have a tea break. If life doesn't want one - that's life's problem.

Wednesday, July 13, 2011

Press and abuse

There are two items in the current headlines that worry me greatly. One is obviously the additional abuse of people with learning disabilities at a second Castlebeck home near Bristol. This only seems to have come to light because of the gross abuses uncovered by Panorama at the first, now closed home.

I strongly suspect this sort of thing goes on in many locations behind closed doors and have very little confidence in CQC's monitoring regime to pick it up. Their almost complete reliance on checklisting and whistleblowers seems to me a total abdication of responsibility. They seem far more concerned to 'work with the care homes' than to hold them to account.

The other headline that strikes home for me is the invasion of Gordon Browns sons privacy, by the newspapers gathering information on his medical condition and publishing it. We went through a traumatic time ourselves when my son was small and critically ill with the press (mainly national) camped outside our house, pestering us at a time when we were in fear of losing him. This was presented as a sympathetic 'human' story but the way the information was gathered was anything but humane. We had incidents of reporters impersonating doctors in hospital, one case of a photographer putting a ladder up to the intensive care window, and a continual siege where reporters pestered us at the most distressing times, completely uncaring of the impact they were having. Things have got better since then (20/30 years ago) - but it seems more by going underground than actually being more considerate.

It's interesting to look at these two headline stories together. The one that is far and away deemed more important is about mental abuse and privacy rights. The one that disappears among the 'and also ...' stories is about hard physical abuse and personal destruction of dignity. It feels like something may be done about the first, but the response on the second is weak.

They're both wrongdoing, but in my book abuse should be taken more seriously than invasion of privacy.

Wednesday, July 6, 2011

Another yellow card

Just sent in our second 'yellow card' in a week for substandard/failing medical devices.

Another part of the feeding system - the tubes that connect gastrostomy to feed tubing. We've had x5 fall apart in a fortnight (they're meant to last about x3 months). The ends with the connections seem not to be glued onto the tubing and they simply fall apart in use. Result is feed pumped everywhere - except into his stomache.

There has been a real deterioration in medical equipment in the last few years - presumably due to cost cutting resulting in poorer quality. Meanwhile we are told 'you're the only ones complaining'. Reason for this is simple. Most of this type of equipment is used in hospitals or nursing homes. If an item fails, the staff member doing the job simply discards it and pulls another off the shelf. There is no incentive (it's actually quite hard) to send it back and/or report it. so it looks like it's working. We have seen this happen numerous times on the wards - in the community, we get shouted at by the budget holders for trying to use 'more than his allowance.'

I do object to this equipment failing on value for money grounds. I object much more to it failing as it results in my son being malnourished, dehydrated and soaked in sticky feed that should be going into his body, not all over it.