Staying alive

As a parent, did you ever suddenly find out your child wasn't where you expected them to be - and you didn't know what had happened? Panic. Cold feeling in pit of stomach. If that 'child' has learning disabilities (as well as medical problems) this doesn't stop once they're old enough to go to the pub on their own.

Rang up one morning last week to make arrangements for later that week - he hadn't arrived at day care, over an hour late but had left his home. Panic. Cold sweat - he needs a nurse with him - where was he? where were they? Had there been an accident, what had happened, should we run for the car, where the hell was he?

Needless to say, all was in fact well. He had had an accident - involving his urine continence, necessitating a complete change of clothes etc.. Coupled with altered transport due to half term chaos. The nurses had in fact coped and communicated and all was well. If we hadn't rung we'd never have seen a problem.

But you do when it's your son. It's not rational, it's emotional. But it's real when you have an adult with these sort of problems. And it goes on all their life. Children grow up, and I know my 30 year old daughter will always be a little girl needing my protection in my eyes (not that she needs it really, sorry S.) but my son will. He'll never be fully grown up enough to leave on his own in case he chokes or has a bad fit, so I'll always be a worried parent.

Another parent with a far less disabled son than mine was once asked what was the best thing he could do to ensure his son got the best care possible. I thought his answer was incredibly wise - 'Stay alive as long as I can.'

This time things didn't go wrong - next time they might (shit happens - no-one's to blame). I trust his carers and nurses, but he's my son - trust can go a long way, but it will never go as far as I will. I don't apologize for this, or blame anyone - it's just part of being a parent.

A different kind of review

There are reviews - and reviews. The one we had today was the internal one we have regularly with the two charities who share care with us. Needless to say Social Services were invited as usual - but as usual, didn't turn up. This is the review where we talk about the real care issues - how we're going to manage his chest over the next year, what we're going to change with his nursing, how the current continence equipment is or isn't working etc.. If this isn't Social Work I'm not sure what is.

They're happy enough to set up their own review to see if they can cut anything and insist we jump through their hoops and tick their boxes for it, but attending the regular ones that cover the real work doesn't seem important to them. Mind you, our reviews aren't about money (unless it's the iniquity of how much it costs him to go to the pictures because the cinema insists he pays for his nurse and driver - he can hardly leave one in the car for the length of a film.). The only interest Social Services seem to have in his care these days is how much it costs and whether they can reduce it to save a bit more - now that's what they call a review, and we've got one of those going on in parallel.

They don't know him, they don't really care about him, they're not involved - as long as they can tick the boxes and knock a few pounds off - job done. (That's probably a bit unfair to the individual doing it - but it's not unfair to the system she's feeding.)

P.S. NHS did attend for once. They sent one of the few people who's actually fought our corner in the past. She'll do it again for us this time - unfortunately the cuts mean she's having to take early retirement next month.

Street theatre, from the gallery

Adrenalin starting to subside - it's been a long day. We went as a disabled family to let the County Council know exactly who they were cutting. But they cut anyway. They made £179m worth of 'savings' over the next three years. Mainly at our expense.

One saving will close disabled childrens' respite centres, another will take money away from charities who provide care to disabled adults, yet more will be saved by taking support away from people with 'moderate' disabilities. People with a learning disability are particularly being hit with their current support service being 'remodeled' (read cut). There are many more. They actually made more 'savings' than the headline figure because they're bringing in cash by increasing charges - less services for vulnerable people who have to pay for the little that's left.

No namby pamby library closures or reductions in cultural services here - go for the jugular - cut basic living services for those they think can't answer back. The elderly, the disabled, carers.

Anyway, we buttonholed a lot of councilors before the meeting - the conservative majority didn't want to talk, unsurprisingly, but at least they now know what a disabled person looks like. Then we trooped up six flights of stairs to the gallery (wheelchairs not admitted of course). There was some shouting from the gallery (one mum took exception to the phrase 'cutting out waste' justifying her sons service cuts - I thought she was quite restrained actually) so the police were called to clear out the public gallery. Shifting disabled families with a real grievance can't be the most fun a policeman gets but it kept the council's 'headmaster' happy.

It made the news so the message got through - it didn't stop the service cuts. So the real work starts here, when each cut gets implemented. It's not even militancy - it's self preservation.

These carers and disabled people didn't fit the quiet, heroic vulnerables, silently suffering nicely out of sight (and mostly out of mind) image the media likes. We can be feisty when we have to - oh, and we have the vote these days as well.

Back on the street again

Tomorrow we, as a family, will take to the streets - wheelchair and all (assuming he's well enough) on my first demonstration since I marched against the Vietnam war 40 odd years ago. I don't have the time or energy for this really - being a carer takes it out of you and doesn't leave you much free time. But this is important.

• Our council is reducing the money it pays charities to help care for my son.
• It's taking care away from people with only (sic) moderate learning disabilities.
• It's closing respite centres for learning disabled children.
• It's reducing support for people with personalised budgets and domiciliary care by 20%.
• And the elderly and disabled here are being hit with more than their fair share of these cuts.

If we don't stand up now and say clearly that these cuts are hurting real people and we won't stand for it, they will see us as easy targets and cut even more. People like my son are vulnerable - they need to be cared for. Reducing his service will reduce the quality of his life. Of course we'll protect him as much as we can, but we don't have limitless funds - and care costs. We can only stay awake so long - and care takes time. One day we won't be here to protect him - someone will have to do it and it's only fair they should get paid for this.

We won't be the only wheels on the street - whether it will make a difference, we'll wait and see. I don't really want to have to do this but I have to.

If we all really are in this together, some of us have barely got wet feet and some of us are in it up to our necks - and it's the weakest who are in the deepest. This is wrong.

Pain diagnosed

We'd been getting reports from the nurses that our son had been 'a bit off colour' at times recently. It's taken a while but I think we've worked out why. He has a boil - in an extremely intimate place full of wrinkles. It makes me shiver just thinking about it. Antibiotics changed to deal with it and panadol to dull it but it flags up again how difficult it can be to spot something that causes him real discomfort. He's probably had it unspotted for a day or two - nobody's fault but it still gives me nagging worries.

Rush of adrenalin when first discovered - a lump there could have been the big C. (No matter what your other disabilities, you're not immune from the things everyone else gets.) Fortunately (in relative terms) it wasn't, but scary none the less.

I can't help worrying there may be other things going on he can't tell us about. He's got a whole set of organs inside we can't see - one of which is an appendix. I've no idea how we'd spot that one until it was too late.

So much for democracy

I used to think that our democratic system was a bit flawed. I'm beginning to think I was wrong - it's very flawed. When you have an issue with what your council is doing, you're recommended to go to your local councilor.

I have an issue - our local council is cutting services to disabled people (including my son) massively. I've written to - my own councilor, my son's councilor, our designated 'Disability Champion' councilor and the cabinet member responsible for social services. None have replied, other than to tell me that they've referred the comment to the cabinet member.

The only reaction he's made to any of us representatives of people with learning disabilities (to a communication described as 'powerful' by a senior officer of the said council) was to say he'd had no reaction other than a few 'vexatious messages'.

I used to be a reasonable man, but I'm getting less reasonable by the day. Being ignored by elected representatives isn't nice - being insulted for having the temerity to disagree is unacceptable. I belong to no political party - maybe I'll have to to be heard, but bet your life it won't be the one treating us like this.

A cold drop

Son's health not best at present. Cold and wind sets off his asthma and affects his chest. He's been fairly 'bubbly' last few days and is on a double length antibiotic course for chest, plus more oxygen than usual and low O2 saturations due to secretions etc. 'blocking off' parts of his lungs. It's not unusual for this time of year, and certainly not as bad as last winter, but a real worry all the same. He's going to need to pick up a bit if he's to come to County Hall with us for the budget cuts. Still he had a couple of good relaxed evenings with us earlier in the week and as long as we keep on top of his asthma things should settle again.

He's an amazingly good weather predictor - he usually spots a front coming over at least a day before the weather and winds really hit. Unfortunately the way he spots it is for his breathing to deteriorate - I'd rather it was just the barometer that dropped.

Wheelchairs on the streets

Our own son's care 'reassessment' continues. Cuts will be to his transport, day care and nursing cover. Haven't gone through yet and we're still fighting to minimize impact on his quality of life but it's clear this is an attempt to cut costs. The only thing holding it up is the lack of staff at the PCT (Primary Care Trust) to carry out his health assessment - the one qualified person who knew him well enough has been made redundant.

Meanwhile our beloved (not!) County Council continues with its cuts. It's already started closing respite facilities for children with severe learning disabilities and approves it's budget for major cuts to Adult and Children's Social Care on Thursday. Went to a local rally generally against the cuts on Saturday - the learning disability contingent was over 20 strong, learning disabled, children and wheelchairs - it takes quite a lot for these people to brave a cold, northern February day for 2 hours, but these cuts are specific. They are damaging their lives and they know that. The council is already closing learning disabled children's respite facilities and withdrawing funding from day projects - the budget includes 20% cuts to personal budgets and domiciliary care, funding cuts to charities that provide the care on the ground, taking care away from those with 'moderate' disabilities and 'remodeling' (i.e. cutting) learning disability supported living.

Currently I'm helping organize our own demonstration when the council passes it's cuts budget this coming week. Apologies for delays blogging but this is too important and takes up a lot of time.

We may not win, but these cuts can't go unchallenged.

Cuts hurt people - really

Heavy week. Too many meetings with council about cuts (all day meetings - we don't have that sort of time), also care assessment meeting that didn't finish until 6:30 plus looking after him ourselves without nurse. It's hard work looking after him - meds, lifting, suction etc. but it has its rewards when he sits there on the sofa with you chilled out and just resting. There can't be many 28 year olds who'll tolerate an evening cuddle from parents watching tele.

Meetings about cuts or assessments don't have that upside. The stress and anxiety levels just get driven up and seem to hover at an uncomfortable edgy level for days. Sleeping, even without him here, gets to be something you celebrate and only comes when you're so exhausted you fall off doing something. Have to do something to stop the adrenalized thoughts going round and round in circles. Even resorted to low volume, watching channel Dave until dozed off last night.

I'll almost be happier once these cuts hit properly. At least we'll know exactly how hard things are going to be and can get on with living. Fighting them, when you know you'll almost certainly lose is really wearing. It's not like it'll stop when we're beaten, it just means life will be even harder than it is now. These cuts are real - we now know fairly well what's going to disappear - most of his transport, almost certainly some day care, probably some of his 'ancillary' services, and that's with us battling to keep them. The ones I really feel for are those with moderate learning disabilities. Our sons disability is obvious and we'll find ways to make sure his quality of life doesn't suffer, somehow - at someone's expense, if not our own. They are in line for effectively losing all their support, they won't understand what's happening or why and many of them will be left with no-one to fight their corner.

I'm not going to feel guilty that our sons service is stopping them and others getting a service - we're not responsible for these cuts. The politicians and senior council officials are. I will blame them. They've got this wrong, and asking us to choose who else to cut (which they have) so we can keep our service is wrong.

And yes, I am bitter.