Wednesday, June 29, 2011

Deva vue failure

Having just posted at length on the joys of a failed enteral feeding pump and the poor quality of equipment and service provided via NHS contractor - the pump we used to 'fill the gap' when the first pump failed, has now failed itself. If I hadn't made myself unpopular by insisting on an urgent replacement, he would now have no working feed system.

We now have - one emergency delivered working pump (I hope - untested here), and two failed pumps (one they didn't collect yesterday and one that failed just now.)

Tomorrow is going to be another cross day - their emergency number takes quarter of a an hour to answer and can't even pass a message to the company responsible - I have to do that myself when the office opens in the morning. I will.

Various forms of inaction

Things are hopefully on the move. This is the result of much pushing and shoving. The review of our sons care package - without which we can't plug the gap created last year by CQC changing its rules - has been stalled for over 8 months due to complete inaction by our PCT (Primary Care Trust - local NHS). So we had a meeting with them and insisted they get their finger out - a month ago. The inaction continued - so a week or so ago I planted a small 'embarrassment bomb' with a local watchdog organization and kept ringing them up for 2 days. I now have a named nurse who is due to start his medical assessment late next week. Why do I have to become a troublemaker just to get what is necessary?

On the practical front - our battles with substandard medical equipment continue. The feed pump system he uses (that supplies his nutrition, fluids, medication etc.) has been gradually deteriorating over the last few years. The tubing used to just work, the pumps got serviced every 6 months, the 'peg' (the bit that goes through his stomache wall) and connecting tubes lasted about 3 months and were replaced on a regular cycle.

These days things are a little different. The pumps are no longer serviced - they now wait until they fail and then replace them (the theory is in 24 hours - the reality is they lose your request, and only send a replacement 3 or 4 days later and 4 or 5 increasingly irritated phone calls later). The 'pegs' fail on average after a month or so and the connecting tubes fall apart literally in days sometimes.

These are medical devices. They're supposed to be made to a high standard. They used to be - but not any more. I'm fairly convinced in my mind that the pressure to keep costs down is resulting in the purchase of poorly made equipment and a complete lack of quality control. I don't have the evidence, but the recent Panorama programme on operating theatre equipment would seem to bear this out. If the physical equipment is so substandard, what confidence can I have in the quality of medicines etc.?

We have reported these failures using the NHS's 'yellow card' system (MHRA) but I'm not hopeful. Like CQC these days, it seems more concerned with 'tick box compliance' than actually solving these sort of issues. I can live without an automated acknowledgement that runs to over a page of legalese but says nothing about our actual issue.

Doubtless I'll also be labelled 'difficult' for having the temerity to flag up these failings. Maybe I am - so be it.

Tuesday, June 28, 2011

Things to do

Things to do today.
  • Ring up local PCT (oddly it seems to be still there and sort of doing things even though it formally 'dissolved itself' a few weeks ago) to see if they've acted on carrying out sons health care package review stalled since last autumn. Answer likely to be no action, so I've my own action lined up in response.
  • Attend meeting of carers and people with disabilities concerned about local service cuts. Very difficult to fight these cuts as they are doing them mostly, not by closing things, but by picking off and individually reducing peoples care packages. Finding out exactly what's been cut is hard, especially for people with learning disabilities as they often don't realize it's happened until too late.
  • Find out how we can contribute as a group to an extension to a multi sensory resource centre locally. This sort of thing used to be publicly funded but these days, if it's going to happen at all we have to fund raise and do it ourselves.
  • Collect replacement feed pump due for delivery today - last one 'failed' over weekend and we had to rush ours over as temporary stop gap. Need to decide whether to make an issue of the poor quality of this equipment and the lack of service being provided by the company responsible. Not sure whether I can cope with another battle right now.
  • Hire a van to do house move (not mine) and start packing up things ready for move.
  • Do housework and ferry wife to shops as she's unable to drive etc. following operation. Crutches get in way of steering wheel.
  • Go to pub quiz this evening. This is the one night out we allow ourselves most weeks and helps maintain our sanity. These two pints of beer constitute my weekly units of alcohol - I think I'm under the safe limits.
Quiet day as our son doesn't come home until tomorrow.

Monday, June 27, 2011

Carers have lives too

I'm very conscious that I haven't been posting as much as I'd like recently - sorry, but there are reasons.

The trials and tribulations go on with our sons care - lack of progress on care package (being shouted about), failure of medical equipment (being addressed by us), concerns about sons continuing quality of life (doing something about this). But at the same time, the ordinary issues of family life that everyone else has, happen as well. We're currently helping our daughter with a major situation change (positive) and my wife has just had an operation (positive in the sense that the offending 'bit' has now been removed), so things are a bit busy just now. Everybody has these sort of commitments arising from time to time, but if you're a carer as well, it all gets a bit more complicated and tiring. Carers are ordinary people with normal lives - or at least trying to have normal lives. It's just that they have this extra caring layer on top. I suppose it's a like having two full time jobs - it makes the life/work balance thing generally trickier.

So if you see a carer looking stressed - don't assume it's a problem with the person they care for. It's just as likely to be the sort of thing that would stress you out - they're just operating that bit closer to the edge than you all the time.

Cosmological P.S. The world really is flat - I've looked over the edge quite a few times and it's an awful long way down.

Monday, June 13, 2011

Not moving or handling

While the cuts continue to bite and Social Services and the NHS avoid talking to us (apart from a letter from our elected cabinet councillor telling us they're now going to charge for the few services they are continuing with), we have rather more practical problems to deal with.

Some weeks ago our sons track hoist broke - not a disaster, he didn't fall or anything - the control wire got trapped and pulled it out of the control unit, and it just stopped. So we rang 'Loan Store' to see about a repair - and that's where the problems started. They rang up the firm who rang us - to tell us we didn't have one of their track hoists. But we do - it has their name on it, serial number etc.. It seems someone has lost our record off the system - haven't worked out if it's Loan Store or the company.

Meanwhile, we have a broken track hoist and (officially) no way to get our son in and out of his wheelchair downstairs. Simple mindedly, you'd think this was an emergency (or at least urgent) - but it's now 3 weeks and no action apparent. urgent is obviously a relative term.

You'll note I said (officially). Because as a carer you get used to this sort of thing and over time, get quite proficient at 'stop gapping'. (Fortunately) we had a spare control (salvaged from an old track hoist) that we used to get it working with a bit of (unofficial) soldering. It's almost certainly against the rules and if it goes wrong we'll almost certainly get shouted at, but when you can't move a disabled person at all and the official idea of urgency runs to months, there really isn't much alternative.

We have now replaced the (unofficial) working unit with the broken one, just in case the menders turn up - but I'm not holding my breath. If I did, I'd be long dead of asphyxiation - and I wouldn't have the breath to shout down the phone for them to get their fingers out.

Thursday, June 9, 2011

Panorama hurts

I've said nothing here about the Panorama programme so far, but it had a real emotional impact on us. Our son is rather more disabled than those who were abused and victimized. He's actually more vulnerable than they were.

I'm fairly certain he isn't taken advantage of, mainly because both service providers welcome us into sharing his care and even when he's with them, we frequently just turn up unannounced to do practical things - new clothes in his wardrobe, pick up a piece of equipment for fixing or just to see him.

This didn't make viewing Panorama any easier. We could have peopled that unit with very similar friends of his who we know well. I don't think they're being abused, but they don't all have families looking out for them - how would I know? CQC was obviously no help.

It was a strange mix of emotions that I'm only now beginning to get sorted out. There was a big element of pain/distress - I didn't cry because there was too much else milling around. There was considerable anger - I could comfortably have taken the law into my own hands if I'd been there. There was real fear mixed in with it - it made me doubt others care quality that I'd assumed was OK. There were mixed emotions about the role of the reporter - he'd made it public but stood by and let it happen.

I can react to this abomination on a practical emotional level - I can hate the people who did this, I can despise the company that let it happen, I can berate CQC for not intervening. But I still don't know how I feel about the whole thing myself - obviously my feelings are very negative, but there's an awful lot of numbness there as well. I'd like to not believe it had happened, but it did. And it could so easily have been my son.

Thank god for the Archbishop

I'm not a religious person, but I have to say thank you to the Archbishop of Canterbury. He hit one nail very firmly on the head. Whatever the cuts - and they are real for us - one of the most damaging things this government has done is to sow fear, distrust and uncertainty in the minds of the vulnerable.

They are cutting Adult Services and we'll have to deal with that - but they've also forced the sacking of many of the 'officials' we dealt with. Some were helpful, other 'gatekeepered' access to critical services. Now we have no one to go to and are not only losing services, but have no one to go to when we need to sort out the services left that we are still entitled to. So we're left in limbo without a service.

They are 'reorganizing' the NHS, and we've already lost many of the specialist nurses/professionals who were important to my sons care. But what makes it worse is that the NHS is now in complete disarray with it's staff unsure who they work for, what they are supposed to be doing and whether they have a job at all. Result is our sons care needs get ignored/lost in the chaos.

We're going to lose my son's Mobility Allowance and still have to work out how we'll finance his wheelchair adapted van. It won't happen until next year (or maybe later). He's also going to have his benefits (minimal though they are, because he's classed as in a nursing home) re-assessed - and no one's talking about putting them up. But we're left anticipating the effect this will have on his quality of life.

It isn't just the cuts - it's the mess that leaves us unsupported. It's hard enough being a carer. It's even harder being disabled. But why do they have to make life so uncertain and put us in such fear that we're going to lose even more.

We used to have a care package that worked. There are already holes in it, but the fear of the holes to come (some known, some threatened) is dispiriting and frightening.

Thank you Dr. Rowan Williams - I'm sure your boss will be pleased with your actions - didn't he say 'Whatever you do the least of my children, you do to me.' - afraid I don't have the Biblical reference, one of the gospels. (Maybe someone could send it to Mr. Cameron/Clegg.)

Minor idiocy

It's no big thing really - but it still makes me cross.

We have a number of pieces of medical equipment that my son uses. Some of these are on long term loan from the local NHS 'Loan Store' (I think called Resources Centre in it's current incarnation - but as the PCT 'dissolved itself' here last week, it may be something else by now.) Regular readers will be aware that these pieces of critical medical equipment break down from time to time. So we ask for a repair/replacement. After many handset wearing down, telephone calls, someone agrees to replace the broken thing. Some weeks later someone turns up (unannounced - so good job we're in) with the replacement.

We try to give them the broken equipment it replaces. 'Sorry mate, I'm just doing deliveries. You'll have to arrange for a collection visit'. It's the same man, in the same van who does deliveries and collections - but each has to be ordered separately and done on a separate visit. We say we think it's daft - he agrees, it is daft. No one seems to know why it's like this, and only we seem to care.

It's a waste of everyone's time, money, petrol and patience. Rant 'on hold'.

Thursday, June 2, 2011

Bemused by Health

We had our long awaited meeting with the local PCT (Primary Care Trust) today. We'd been bracing ourselves for some time - this is what has been delaying our sons care package review and I was expecting at the very least some negativity about how much his care package cost and at worst an insistence that they couldn't afford it and would be cutting his care. It didn't quite go like that.

After establishing that neither of the PCT people had read (or even seen?) the mountain of paperwork we've had to do for Social Services (we'd specifically asked SS to send the stuff and the PCT to read it before the meeting), they proceeded to tell us that the PCT had ceased to formally exist the day before and didn't know who would be in charge following the current re-organization. His 'case' was very firmly in the 'pending' file and without us insisting on this meeting would definitely still be there - and it still might stay there.

We didn't ask for this review and don't particularly want it, but while it's in limbo, we have a serious hole in his care package created by the new registration rules of CQC (Care Quality Commission). So we have to get the review sorted out to put replacement care arrangements in place. We managed to get this meeting only by dint of publicly embarrassing the PCT - and now I'm not sure what is going on.

We got our message across and it was accepted. Though, sympathetic though they were, I got the distinct impression that they didn't see any of it as their fault. They seem to be relying on batting it further on to 'continuing care', which is a different bunch of managers, so it won't be coming out of their budget or workload. It all felt very like banging our heads against a very soft, delicately fragranced, wall - lined 3 feet thick with foam rubber. I'm not sure we made any real impression, (other than possibly having our cards marked as difficult). I do know that I'm only going to wait a short time for a response, and then I'll be back irritating the hell out of them until we actually get some real action.

This meeting added to my impression of an NHS in organizational meltdown - no-one seems to know who's responsible for what, everyone is clinging onto their job for dear life and the last thing on anyone's mind is getting anything actually done.

I'm sure they are nice people - I just wish they weren't NOT running our health service.