Wednesday, March 30, 2011

Home alone - waiting

I got it wrong again. Our son wasn't over the worst. As has happened previously, one problem has sparked off another and his physio feels his normal sub optimal chest now has a pneumonia - badly enough for the GP to put him on the more 'heavy duty' antibiotics and suggest moving him back home might not be such a good idea.

He's getting good care, particularly from his physio, but we'd been looking forward to his regular days back with us this afternoon - that's not going to happen until he's rather better than he is now. Not that the nurses aren't good and caring, or that the care situation isn't going out of it's way to help, but when he's this ill, we want to be with him - and camping out over there is inevitably intrusive for them and disruptive for us - and we enjoyed having him at home to ourselves some of the time (and more importantly, he enjoyed it as well.)

Anyway, he's the one who's ill, so his health comes substantially higher up the priorities than our convenience, so we're spending lots of time over there with him. My wife's been there most of the day and I've just got back home to pull together a few needed bits, hang out the washing and be less of a clutter while they toilet and bathe him. I'm now 'home alone' again waiting to hear how he is, whether he's well enough for my wife to leave him for the night (or part of it) and generally rattling around the house doing mindless, unnecessary chores to keep myself occupied.

There needs to be a word for this sort of edgy, restless waiting state but I don't know what it is - it used to be the norm when he went into hospital as no matter how ill he was, only one of us was allowed to stay overnight on the ward. I don't envy my wife the stress of being there helping with his care, but although it's easier, I can't say I enjoy being this far away when he's this ill.

The one bit of silver cloud lining in all this is that as we couldn't cook, we treated ourselves to fish and chips for tea. Even enjoying that was a bit of a guilty pleasure.

I have to admit, I'm writing this post mainly for myself - but you're more than welcome to eavesdrop.

Friday, March 25, 2011

Race of life

Sometimes life catches up with you. Sometimes it overtakes you and disappears off into the distance without you. It's a bit like this here at the moment.

Our son has been ill - difficult to tell what with, probably a tummy virus, but as he can't speak or communicate that well we can't really be sure. He's over the worst (I think) but it's left him pretty washed out and he's sleeping much of the time - not always that comfortably. At the same time we've had one care 'incident' we've had to complain about (complaining is hard, especially when it involves people you know well and you know you've got to work with afterwards) and our CQC initiated 'care deficit' has now escalated into a major problem with one care provider unable/unwilling to provide care in certain settings. (As this will limit what he can do we're going to have to set up an alternative - while picking up the extra care load ourselves. This involves waking watch overnights, so last week we did x3 back to back shifts on the run - no paid carer would be allowed to, but we're not paid, so that's OK.) My own parents are in poor health with dad just coming out of hospital and mum going in and on top of all this, I have to organize felling a large tree in their garden that's causing a neighbour dispute.

I've just re-read this - it's too long and whingeing. Actually, it isn't meant to be - it's just how things are for carers. Caring on it's own can be hard and stressful in it's own right, but non carers often forget that it's on top of the issues everyone else has anyway. Life goes on whatever you do, and impacts on you even if you ignore it.

Oh, by the way, his care review still isn't sorted by Social Services/NHS, the cuts are starting to hit and I'm supposed to be fighting them, and I've promised to give a talk next week to a group of about 50 people (on a completely non care, non disability topic I have a research interest in.)

I do have a life outside care and disability but sometimes I wish I didn't.

Friday, March 18, 2011

A big thank you

My thanks have to go to Disability Equality North West and the two legal firms who are helping them. They've taken out a legal action against Lancashire County Council over the so called 'consultation' exercise they carried out around their announcement of £179m cuts - heavily affecting people with disabilities, involving much front line care cutting and intended to take place very quickly. (They've been very quiet about how many jobs will be lost, but some estimates say 6,000, many from front line and care).

LCC took it's decisions about what to cut before it embarked on it's joke of a consultation exercise, and passed the cuts in full council, unchanged, even before the 'consultation' was finished. No impact assessment was carried out and there has been practically no attempt to respond to local peoples fears about how these cuts will affect them, with local Conservative councilors apparently unable to respond to their electorate without passing the queries up to LCC cabinet.

These cuts are deep and being implemented with an unseemly haste. They are heavily front line weighted and include closure of respite units for severely disabled children, taking services away from many people who get them at present, imposing heavy charges for what little services remain and massive reductions to the money given to care providers to look after elderly and disabled people.

When LCC say there is no money I get very angry. They have between £50m and £150m in reserves 'for a rainy day' - it's absolutely pissing down now. They are still intending to build new roads - tarmac is obviously more important than people. They are right now in process of letting a tender worth between £20m and £40m for superfast broadband - I've nothing against the internet, but I think providing care is a higher priority right now than allowing people to access this blog a few milliseconds earlier than at present.

Thank you Disability Rights North West. As carers we're trying to fight these cuts but we wouldn't have known how to object to this or had the time to do it even if we'd known it was possible. There are people out there who can see an injustice and are willing to do something about it - thank you.

Thursday, March 17, 2011

Illness can make you stressed

Not a particularly good week. Our son seems to have picked up a viral stomach bug. Doesn't sound much but with his condition, this sort of thing can be a major problem. (We know it's viral because he's already on a course of antibiotics for his last chest infection). Started one evening with him being 'a bit off' - this involved him having extra fits and quite severe asthmatic symptoms with copious production of fluids (he uses both epilepsy and asthma for communication and they both get worse anyway when he's stressed and/or uncomfortable). Keeping his airways clear therefore became even more of a problem than usual.

By following day the actual cause of the problem became apparent - high temperature and even a small vomit (this is extremely unusual as he's had operations to limit his 'food pipe' so that he's less likely to breathe in stomach contents). Even though he can't speak, he obviously felt lousy, so panadol etc. became order of the day. By mid morning he was completely exhausted and went into a deep, unrousable sleep. We've had a day or two of this now and he's gradually picking up but his condition makes him very vulnerable to what for us would just be an odd day off work.

We know these sort of things can be life threatening for him if we and the nurses don't keep on top of things, but we've lived with it so long, you'd think we'd be used to it by now. In a way we are - we've learned to just get on with things around him - but we still get wound up about it. We operate normally at a fairly high level of stress - it's another notch up just now.

Friday, March 11, 2011

Spanners in the works

I saw an article on the TV this morning about the difficulties and delays getting wheelchairs for disabled children - to the extent that they grew out of them before they arrived. And the empathy flowed. Our experience was almost identical when our son was younger - it should have got better by now, but apparently not.

I know we still have major battles with wheelchair services about every couple of years - he uses a supported seating system in a chassis that needs alteration as his back shape alters - otherwise it damages rather than helps. But the problem is wider than just wheelchairs. Readers who have been here for a while will be aware of the issues we've had with with other equipment - feed pumps that break down and never get serviced, hoists and slings that are made incorrectly, gastrostomy (feeding direct into stomach) tubes that don't get replaced after they've come apart in your hands, oxygen equipment incorrectly set up, orthopaedic footwear that takes 2 years to arrive and needs remaking at least 3 times, etc. etc. (see archives of this blog for details). People outside our enclosed little world tend to be horrified by things like this and assume they're one off failings. Unfortunately disability/medical equipment is in my experience, generally poorly designed, made from substandard materiels and inadequately serviced and administered. Like most of health and social services, it's subject to cost cutting and restrictions.

Failures of medical equipment are supposed to be reported via the 'yellow card' system and we use it almost every time. Unfortunately much of this equipment is used in hospital settings and if something fails there, the nurses simply throw it away and replace it - out in the community, we don't have that luxury, or a stock cupboard to call on. The result is that most users (in hospitals) don't report, so nothing gets done. We've more than once been told off by manufacturers for reporting breakdowns - 'no one else seems to complain'.

The current government response to the wheelchair issue seems to be not to insist things get better, but to suggest disabled people buy their own through some sort of 'direct payments' system. This won't work for two reasons - the equipment isn't standard, by the nature of disability it's personalised and often technical (how does someone with a cerebral palsy and a learning disability choose the right wheelchair and feeding system?), and experience of 'personalisation' so far is that it quickly becomes standardized - one size here, literally doesn't fit all.

I could rant all day on this but I guess you've got the gist. We understand more than most about this equipment, having had 28 years experience - god help families with a newly disabled child/adult, because there's no one else to advise you. (Please don't respond that you can ask an Occupational Therapist - their experience is limited, often to standard equipment, and how do you get access to one? - or even know that's who you need in the first place. I don't want to offend OT's, some are brilliant - some aren't and access to them is at best difficult.)

Wednesday, March 9, 2011


Back in the real world, we've been walking on eggshells for the past few months. Our shared care relationship with one of our sons care providers has been less than comfortable. Partly some personality clashes and partly changes in the care framework. CQC somewhat to blame for their 'tick box culture' of what nurses can and can't do under different forms of registration as well as the normal drift towards having to document and protocol everything that moves and araldite everything to the floor that doesn't, just in case it decides to move.

Anyway, I think we're moving back from a suspended hostilities relationship via mutual co-existence with a target of reinstated trust. Half of care is actually about care, the other half is about trust - and if anything damages the trust (internally or externally caused) the care itself is in real danger. We've had a lot of sleepless nights working out how we could avoid this impacting on our sons actual care and it's caused a fairly massive amount of stress - hopefully things are getting better. We're (both sides) starting to trade apologies for the smallest things not perfectly in line and going out of our way to do little things that show willing over the small daily crises that are normal life. I think it's going to work - it has to as there isn't really an alternative.

All this has been going on while we've been distracted by the service cuts and his care review - both still ongoing and likely to get worse. His equipment still breaks down with disturbing regularity - feed pump failed over the weekend and no replacement arrived, tyre came off wheelchair and damaged wheel so new front wheel needed, postural drainage 'chair' has given problems and issue with oxygen prescription being 'cocked up' still isn't finalized.

But all this is about things, and things can be mended - mending relationships is infinitely harder and far more critical.

Tuesday, March 8, 2011

Split personality

I'm not quite sure which way I should face at the moment. Originally, the whole point of this blog was to try to give some sort of human voice to what carers have to do on a daily basis. This isn't really that popular - apart maybe for carers themselves and people involved. But I didn't do this to be popular.

Recently I've had to get involved in politics, because my son's care, and that of his friends is threatened by the scale and depth of the recent cuts. This has proved amazingly (to me) popular. Visitors to the blog have increased astronomically and I'm very grateful for the support and sympathetic comment. However, I don't want this to become a political blog.

My gut reaction is to continue with what political action I feel appropriate in the real world, but to take Ned Ludd, carer back to what he started doing this for - trying to flag up the real life issues and problems we carers and the people we look after have on a day to day basis, just keeping things human. I'm afraid some of the more politically involved people may see less that interests them here in the future. It isn't that I've stopped taking action where I feel it matters, it's just that I'm not sure this is the right place to publicize it. If this means a large number of people drift away, sorry - I thank you for your support but pushing a political view isn't why I'm here. I know I'll probably return to being a blog of minority interest, but I can live with that.

I will probably still comment occasionally about specific political situations - they are impacting on our life and it would be dishonest not to acknowledge that - but it won't be a main plank of this blog.

I will also try to avoid any more of this self indulgent navel gazing in future - after all, it is only a blog and these are only words - the real world is a bit more important and needs me more.