More mending

Meanwhile, back on the equipment front ....

The suction machine is still not back mended, and now it's Bank Holiday, so no prospect of getting it back until Tuesday now - it's a good job we didn't throw our the old, obsolete one we had. This is life critical equipment but they'll get around to it when they're ready.

Less life critical, but still extremely important for quality of life, .... his sling (that is used to hoist him in and out of his wheelchair/bed etc.) has developed a small hole. It isn't going to tear apart but it needs rectifying, so we sent it off. But it's just over a year old so out of warranty - so manufacturers won't fix it - and won't send it back as it's officially faulty. So we have only one sling, and if his sheath leaks we do what? Hoist him in a wet sling? Leave him in bed all the time? Fortunately we have a good OT (Occupational Therapist) for this (different from his wheelchair OT) and she's organised a visit from a manufacturers rep on Tuesday. There are some good people out there willing to pull the stops out when needed.

The good experience with the sling doesn't make the suction machine lack of action acceptable.

Protected - from living

I've just posted on the Guardian about the baby P etc. issue. I'm really concerned that all social work these days seems to be about protecting peoples/authorities backs. I know protection is important but feel it's now got to be the only thing social work is about.

There used to be a time when social workers provided a service to people like my son. Now we can only talk to one if there's a crisis, preferably a vulnerability/protection one. It's no longer about doing the right thing to make life better - now it's about not being caught doing the wrong thing. It feels to me that social work has retreated from trying to make life better into only being concerned with not getting blamed for making things worse.

It isn't providing a service anymore, it's preventing people from living .... by risk assessing all the joy out of life, .... by assuming everyone is guilty of the worst possible crimes until they can prove they might be innocent, .... by not looking for the best solution but only for the least risky (to them), .... by withdrawing any services they do provide and contracting them out so there's someone else to blame.

All life is a risk, assessing it, should be about working out what is likely to go wrong and making sure that is allowed for - not just 'don't do it, it might go wrong'.

Care - ful

I worry about my son as you'll have seen from the other posts. But I also worry about my daughter (I know she reads this, so S. stop now if you want.) .... probably more. I still have all the worries the father of a 'normal' child has about his children, but when you have a disabled one, the concern for the 'normal' (in this case fairly extraordinary one, who we are inordinately proud of) is sort of magnified. It isn't that we're less concerned about my disabled son, it's more that we're aware we aren't giving her as much attention because she's more independent and less demanding. She deserves as much but inevitably gets less than half and it isn't fair. Disability affects more than just the disabled, it cheats the siblings and makes parents feel guilty. I don't have any answers to this and I've had over 25 years of looking - I just do what I can. (S. If you did read all this, apologies for embarrassing you.)

Pain speaking

So much for not knowing what to do when he isn't with us. I knew I shouldn't have said that. So just when we thought things were stabilising, he gets an ear infection - but the only way he can tell us he's in pain is to fit - until the infection bursts. We now know what the matter is (I think) so we're treating him with antibiotics and pain killers - seems to be working, in the sense that he's sleeping and not getting too distressed.

This is really what difficult communication is about - it's not difficulty in telling us whether he'd prefer a bath or a shower, or which clothes he wants, or doesn't want to wear - it's about being able to treat him for extreme pain when you don't know he's having it or what's causing it. Being non-verbal isn't a problem, it's a major disability in its own right.

I've had earache from an ear infection and it makes me feel literally sick to know he had that sort of pain before we could do anything about it.

Care - less

Busy time. Son was at home on our part of the shared care arrangement for a couple of days. Had a tired/sleepy time apart from evenings when he chilled out in bath and watched TV etc. He'd just finished one round of antibiotics for a recurrent boil when he developed a urinary tract infection - so back on a different antibiotic and lots of fluids. On top of that, his gastrostomy 'peg' (the tube that goes through his stomache wall) was also due for changing, he copes with just panadol for this - changed OK.

Not sure what else to say - we tend to be a bit shellshocked these days after our couple of days a week with him. I can't really remember what it was like before we had the shared care package with a full nursing team. Until he was 18, we had him pretty much all the time and took turns to collapse - my wife did considerably more than I did as one of us had to work (in our house - me). the only places that would take him for respite were the Childrens Hospices for a few days a year. I do remember sleep being a luxury, and we still seem to eat faster than anyone else, probably out of habit. But things are much better these days and we're beginning to get a life, though it is very strange and we're still the flexibility and backup in the system.

Meanwhile he has a life of his own - trampolining tomorrow, if he's well enough. He's certainly got a better social life than us - but then so he should have at 27.

Raising our Sights

Don't know why I haven't posted on this earlier. The 'Raising our Sights' report is part of Valuing People and is fairly recently published under the sponsorship of Dept. of Health. I went through it over the weekend and kept repeatedly saying - this is us, that's what happened to us - all the way through. I'd just like to say thank you to Prof. Mansell and his collaborators - it is right on the button. I've already recommended it as ammunition in my conversations with -
PCT - on suction and gastrostomy protocols
Wheelchair services - on the need for motorised wheelchairs
Leisure services LD officer - on swimming pool, local college and sports centre, particularly the 'Changing Places campaign for changing tables in disabled toilets.
Link to the report is on the Dept of Health website at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf

Just while I'm on the subject of disabled toilets - had to complain (why does it always have to be a complaint?) yesterday about the supposedly disabled toilets in of all places our local hospital. The access was ridiculous - minimal width down an access passage, no possibility of turning into the doorway and even if we could have got in, we wouldn't have been able to shut the door or get alongside the loo. This is a new hospital and this is the second toilet in it that is like this.

Good news, bad news

The good news is - there are two bits of good news.
The long promised shoes have actually arrived. My son, after 9 months, has a pair of shoes that don't further damage his feet, complete with soles, all the way from Sheffield via Lithuania. I'd like to drink champagne from them but don't dare do anything that might damage them.
Also, we've had a reply from CQC to say they've spoken to the member of staff who agreed his care package originally and although he doesn't fit the tick boxes, we can carry on with the package that works. Didn't need a meeting and they did listen - there are human beings out there.

The bad news is that the suction machine is still broken. Loan Store eventually sent a replacement for the obviously broken bit - at the third attempt, but didn't check the machine actually worked. It doesn't. There's obviously a more deep seated problem so back to the telephone again.

So, life in aggregate, is just a little less complicated than it was this morning.

National Commissioning Conference

I've just come across the upcoming 'National Commissioning Conference 10' from a link on the Guardians website. I don't think I'm invited. Lots of high profile speakers, accountants, Social Service commissioners, providers etc. No client or carer groups at all that I recognise and at a minimum price over £400, so lots of scope for consultation and involvement improvement there then. I think my perspective is likely to be lost on this audience. I wouldn't dare say it's the blind leading the blind, but I might comment along the lines of the vested interests leading the vested interests. Mind you, it could be really good target for a disgruntled carer to put on his list of targets - carers can have targets as well as departments, though ours are more likely to involve eggs than service cuts.

I make no apology for the bitterness in this rant.

If it is broke, do fix it

A small piece of plastic on my sons suction machine (to keep his airway clear) broke last week. It got reported to the Community Loan Store who sent... the wrong bit. So they were rung up again ... and came and looked at the wrong bit, saw that wasn't broken and went away ... leaving it still not working. They've been called again and we've marked up the broken bit with tape - like Harry Potter's broken glasses ... maybe they'll get the message this time. This isn't some luxury gadget - it's a life critical piece of equipment. If this had happened in a hospital there would probably be a full blown inquiry, but out in the community it's seen as just another hassle by the Loan Store, who frequently take the phone off the hook when it gets too busy. Now I have lots of sympathy that they are overworked and under resourced, but these things are important.

This week his gastrostomy tube (he's fed directly through his stomache wall) failed - they only last a couple of weeks anyway, so the nurses asked for a slightly early replacement. And they got an earful from the dietician telling them how expensive these things were and how it was going to affect her budget (they cost about £5 each). Without a tube he can't eat, drink or get medication - what are they meant to do? They and we shouldn't have to worry about someones elses budget problems. After all, she is paid a salary to manage the budget, and she isn't going to die if she's £5 overspent.

These are just the current examples - there's always one or two problems like this we have to sort out, on the go at any given time. I dread to think what it would be like if we were on Direct Payments and had to source all his equipment, buy it and maintain it on top of caring.

Public stress and private stress

I have to go and shout at some people tomorrow - and I don't really want to. Shouting is stressful but it's usually the only way to get the NHS, Social Services etc. take you seriously. This particular shout will be about the fact that the plans for future learning disability services here take no account of people with complex care needs, unless it's about targeting cuts for what are perceived by the treasurers as 'expensive' care packages. They're expensive because they are the most needy and they're still a damn site cheaper than they would be without the free work provided by carers.

At a more personal level, the stress factors are different but no less real. We've had 27 years as primary expert carers, but because we have no official qualifications in the eyes of the service providers we get put in impossible positions. (We do both incidentally have relevant experience and qualifications - in nursing and social housing but as carers these don't count.) When my son is severely ill we inevitably become the nearest thing he has to a 'clinical lead' but it's all unofficial and the nurses often feel uncomfortable or even threatened by it. We find ourselves thinking about how people are going to react when what we need to do is concentrate on what needs to be done. And then we get criticised for 'not letting go' and letting the professionals deal with him. After 27 years, it's the equivalent of being made redundant from a job you're 100% emotionally committed to. I'm afraid we're likely to upset some people we need desperately because we are very focused on my sons needs - it isn't that the team aren't dedicated, but he isn't their son and they go home at the end of the shift, have holidays and can resign. We can't - and don't want to.

Filling the nursing gaps and looking back

Had a really good weekend. We have an old workhouse near where we live that I've done some research on, and this was the weekend we'd persuaded the local archaeologists to do a quick 'Time Team' on it. We do actually have a life as well as being carers. We got stuck in with them and had a really interesting Saturday - Sunday was a bit restricted as we had to collect my son as no nurses available to cover the shifts, but he seemed to enjoy bumping around the field and the fresh air. He wasn't too impressed with having to get up for a 9a.m. Sunday start and going back after his bath at 10p.m. but I think he had a good day.

It's a bit strange researching a workhouse when you have a disabled child. Back in the good old days of Mr Dickens and Queen Victoria, when Britain became Great Britain, my son would probably have ended up there, if he'd survived at all. Their official classifications of mental disability and illness were a bit less PC than ours - deaf & dumb, imbecile, idiot and lunatic. One day I'll grit my teeth and look up what they actually meant. Thank God for the NHS - even if it can't get his shoes sorted out. Those were the days when things really could only get better.

All God's children apparently still don't have shoes

So, we went to the hospital (had to put in a formal complaint to get the uppers back from Lithuania!) and the uppers were ready! And we were told its easy now, another week and the soles will be fitted and he'll have a pair of shoes ........ So, it's now over a fortnight later and, not only no shoes, they still don't know when they will be ready - apparently the factory doesn't work on Fridays and someone has been off on holiday. Net result - no shoes. Better re-activate the formal complaint. So being disabled means you have to live in inappropriate footwear and being a carer means you have to shout at people until they threaten to cut you off for discourtesy. I am a reasonable person really - all I want is a pair of shoes for my son. Everybody else can go to a shop and buy them that day. If they aren't going to be ready as promised, at least someone could have told me .... again.

Expecting the unexpected

Son's health not going badly at present. We had a pretty torrid January and Feb with asthma, chest infections spreading to generalised septacemia and epilepsy taking turns to put him in a pretty uncomfortable state. (It was the aftermath of this that prompted me to start the blog.) Managed to keep him out of hospital with the help of his nursing team - he always deteriorates in hospital and he's had a reasonable month or so since things settled down. Six weeks off antibiotics is pretty good for him at any time, so from a caring perspective things are about as good as they get.
We still have the staff recruitment problem - it's difficult to be seen when your team is so small but the viral advertising campaign is now underway so hopefully we'll get some interest.
Daren't book a holiday this year, in case we don't get the staff but at present we're managing to cover the bulk of shift by filling in the gaps ourselves.
The long awaited shoes are still awaited but are promised this week.
CQC has responded to our entreaties not negatively.
The weather is picking up (though hay fever triggering asthma isn't good) and generally things don't feel too bad just now.
I just can't help wondering what's round the corner!

Musings on hospitals and packages

Just been on a viral leafletting expedition leaving job adverts for nurses in places they might actually see them - I have to be circumspect about this - see previous posts. It felt quite strange going into hospitals on my own knowing I wasn't visiting my son, there for an appointment with him, collecting his equipment/drugs etc. I could do things at my own speed and not have to sit around in waiting rooms for hours. Odd how a familiar place takes on a different perspective when you're there for an unusual purpose.

Meanwhile, back at the care package negotiating table, we've decided to try and get CQC to meet us and thrash out the problem of re-registration forcing a deterioration of our care package. It's quite worrying how in awe of CQC people seem to be - to the extent that you can see the tone of fearful deference entering the conversation when people talk about them. I know they often hold the biggest stick possible to beat recalitrent providers over the head with, but in the end they are are just another public servant manned by human beings, so have a responsibility to be approachable. I suspect they are, so I've asked for a meeting - maybe they're reasonable as well as human(?) I'm very conscious that I'm in a priveliged position as a carer in things like this. I'm allowed to be stroppy where a service provider isn't - it's an odd role reversal for once.

If it's not broke, don't mend it

I'm just bracing myself for an initial meeting, doubtless to be followed by many others, where we'll try not to redesign my sons very good Person Centred Care package (that's taken many years to get in place). The new CQC has decided - without understanding the package - that it needs to review what CSCI very recently rated an Excellent package, and thinks that, because it doesn't fit their one size fits all tickboxes, it may be illegal. They don't seem to think there's anything wrong with the service, and nothing has actually changed (apart from their own administration) but we now have a problem.

His care is complicated, and difficult, and it isn't made any easier by being threatened that parts of it may have to be withdrawn for administrative reasons. There's quite a lot of stress involved in caring for someone with a life threatening condition and the sheer physical strain of what we have to do is itself extremely tiring. We could really do without these 'manufactured' problems. I'm sure the administrators involved feel they are acting from the best safeguarding motives, but from where we're standing (sometimes falling down due to exhaustion) it feels like the attitude is sometimes 'never mind the service, see how safe it is'. Real safeguarding would ensure my sons health and welfare was safeguarded, but it feels like the main thing being actually safeguarded is the legal back of the administration.

I know it's heresy to say anything against safeguarding after Soham and Baby P, but someone has to stand up and say safeguarding isn't everything. If the sins of the few are going to mean anyone with a severe disability doesn't get the service they need, something has gone too far. Neither my son nor I have murdered any children lately, but we're paying the price by having his health put at risk so that organisations that should be providing care, can never be blamed for anything. Bad things have happened - more bad things are happening to us as a result.

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!

All God's children need shoes

At long last it looks like my son may be getting his shoes - soon but not quite yet. The tops are back from Lithuania where the NHS get them made, and they now fit - at third made to measure attempt. They just need soles - apparently Sheffield, and then he can have them. We only got to this point by putting in a formal complaint - it worked but should it have to be like this? He's been without shoes that fit for two years while this hasn't been sorted out. We thanked the lady 'for kicking some arses' but got a fairly blank reaction - she just seemed relieved we weren't taking the complaint further - why would we, all we wanted was the shoes all along, blaming someone wasn't an objective.