No room at the inn (or hospital)

I know it's water under the bridge, but I feel I need to spell out an issue we had before my son died - it needs to get better and if I stay silent it won't. This incident was not the hospital admission when he died but the one before that.

His breathing had been laboured for a day or two and he'd spent the Saturday and Sunday on our hospitals 'Assessment Unit', coming home each night. We'd been told to bring him back in if he hadn't improved in the morning. He had actually got worse overnight, so Monday morning we took him back. But this was Monday and there was 'no room at the inn'. Despite still having a hospital 'tag' on, his notes being on the ward, a medication line still into the vein in his arm, and his breathing being very distressed - we were refused admission because they were full.

We had to make a scene, using the magic words 'vulnerable young adult' before they would do anything - the result being that he ended up, very inappropriately at that point, in the resuscitation bay of Accident and Emergency - because that's all they had with the right equipment. The doctors there were hamstrung in treating him as his notes and 'treatment plan' were still on the Assessment Unit.

We were eventually moved to a ward about 4 hours later and did get an apology from the matron (after involving PALS - now known as Customer Services). He did respond to treatment but it was over a week before we were discharged.

I'm fairly certain that had this almighty cock up not happened, we would not have been able so readily to use our own nursing team on the ward or stay with him ourselves all the time. We were very conscious we were being treated with kid gloves after this fiasco, and it did help - it shouldn't have needed to be that way.

There are other stories around this admission I may post later but this is just presented here as yet more evidence that hospital isn't a good place if you're disabled.

Nothing finishes

I'd no idea how much there was to do when you lose someone. We had an 'end of life plan' - which my son totally ignored as usual, and lots of things in place to cope with his disabilities/illnesses, but nothing for afterwards.

So now we're busy. Certificates, arrangements, letting people know, mountains of admin., collecting his clothes, talking to his care team (because they lost him too) etc. etc.. None of these are all that important in the grand scheme of things - except the people - but they give us a focus and little things remind us of incidents with him - and I usually lose the plot about then.

I'm fairly sure I'll carry on being involved with people with disabilities, particularly PMLD (Profound and Multiple Learning Disabilities), just not sure exactly how yet.

There may be an intermission here, but I will be back. I may have to alter my title - I'm not a carer now. And I won't insult those who still have that role by keeping an honourable title I'm not entitled to any more. However much I've done, I don't have to clean the poo or check the medicines any more - and they do. Respect the carers.

An ending

My son died on Friday.

It wasn't anybody's fault. He'd had enough pain and distress and chose his own time to go. We had three days at home before he had to go back into hospital - things were hard for us but this time they got it right for him. We stayed with him and were allowed to do the bulk of his care, his own nurses came in and were a massive help.

I don't know where this leaves me yet, and to be honest, it doesn't worry me. For now, all I'm interested in is getting him settled, sorting out his affairs and remembering him - not in that order. We've had some good times going through his photographs and talking about the things we did. And we've cried a lot.

He was a big part of our lives, still is and always will be.

Back in the real world

Sons health improved enough to get us discharged from hospital. He was more at risk in hospital because of other patient admissions with serious infectious conditions, so we got out rather earlier than I think the doctors would have liked. Still, they weren't doing anything we can't do at home, and at least he's in a more familiar and supportive environment (and my wife gets to sleep in a bed rather than a chair, and has the luxury of a shower) at home.

I often feel guilty about the weight of responsibility and sheer work and stress she gets through when he's ill. I try to do as much as I can, but the reality is she's better at it than me and certainly knows more, (she has a medical background and inevitably did more of his care when I was at work) so I tend to follow her instructions. He was ill enough this time for our daughter to travel back urgently - whatever she thinks, her support was very welcome and helped us a lot.

So, we're back home, though he's not well yet. And the next set of issues kick in - staff shortages (holidays and illness) mean we're missing nursing shifts and also don't know if the nurses will be allowed to work at our house until he's well enough to move - we may be back unsupported until he's well again. The iller he tends to be, the more problems this gives the support services - so the more we have to pick up at the hardest times. We will survive this - we just won't know how until afterwards.

I'm very conscious that there were a raft of what others will see as horror stories during our stay in hospital, and will spell them out once the dust has settled. For the moment, I'm just grateful we got through this admission with a son.

It's hard in hospital

Still in hospital. Original problem resolving - slowly. Secondary problems of disability spin off problems now to be dealt with. The critical ones are the medical ones, mainly drug side effects/undesirable impacts of necessary procedures. But a significant number involve the inability of hospitals to understand the impacts their organisational procedures have on disabled people and their carers - and there are lots, some more serious than others.

They range from the irritating - poorly organized car parks locking in nurses cars because no one is manning the barrier 'intercom' late at night - to the high risk - urgently needed epilepsy medication being delayed for 2 hours because of the administrative procedures required to sign it 'in' and 'out'.

Will probably elaborate further once he's out of hospital. Just now sleeping is my second highest priority.

Hospital can damage your health

Short post as son in hospital - severe chest/breathing problems.

Despite all supposed words that things are getting better, admission was a nightmare - again. We've had apology from matron but that doesn't improve his treatment or obviate the delay or stress caused. Will take it up later - at present main concern is to get him better.

Hospitals are still not geared up for disabled people. They cater for 'normal' people who are ill. However good the people, the system is a mess.

Professionalism - or not

In the mess of my son's care package review, one particularly irritating shambles was a very poorly written assessment by someone who had barely seen him, but as a professional, had the status to make judgements on the basis of little or no first hand information. We complained about the assessment and sent in our own comments, particularly on some critical omissions and one near slanderous statement. (Probably actionable, had we the energy.)

We've just had a rather grudging apology from the boss, but in the same post, a 'signing off' of his 'case' by the original offender which in turn seems more concerned to label us as unhelpful than to consider our sons actual disabilities.

This really irritates me.

We cared for him pretty much alone for the first 18 years and it's taken us the last 10 to get a care package together that might outlast us. I feel this should give us some status as experts in his care. I certainly feel we know him better than someone parachuted in who only met him (and then under pressure - they would have been happy to have done the assessment from paperwork and second hand comments alone if we hadn't insisted on a visit.) for half an hour.

But this person is a 'professional' and has official status. As carers we don't.

It's bad being ignored. It's worse being actively discounted. It's abysmal when the paperwork is more important than the care.

Disabled and tarnished

So the Low Review into the effects of stopping Mobility Allowance for people in residential care is out. It's a good clear report, setting out the evidence and making the case well for not taking this critical benefit away. (The 'easy read' version - designed to help people with a learning disability is particularly worth commending.) Thanks must go to Lord Low for carrying it out independently and to Mencap and Leonard Cheshire for setting it up.

We now wait to see whether Maria Miller and the government will take any notice of it. They have set up their own very low profile internal government review so they're obviously not just intending to take the Low Review on board as stands.

The thing that really worries me here and might swing the governments response into making this invidious cut, is the general background media articles and TV programmes that publicize benefit cheats as the predominant face of disability. These media forays put disability and benefit scroungers together, making the two closely associated in the public mind. This sort of presentation doesn't actually accuse disabled people of being benefit cheats, but it does bracket them together - and that's wrong. And it can cause substantial damage.

We need to make sure people understand that real people have real disabilities and desperately need things like Mobility Allowance. If we let this association of disability and benefit cheats take hold, the government could play on this as public opinion being for the cut. These views are out there - see the talk forums, even on the Low Review site itself. However much we know they're wrong, we have to acknowledge the views exist so that we can mobilize opinion against them.

We don't want the image of disabled people tarnishing.

Press gang personalization

Reflecting on what I've done recently to get my son's care package back to where it was, I feel a little like I've betrayed myself. If you've read my earlier posts, you'll be aware that I'm not exactly a fan of 'Personalization' - especially when it's presented with a capital P as the panacea in a world of service cuts. And yet here I am, fighting for a personalized budget (albeit a small proportion of his care package).

I'm not doing this because of any sudden change of heart. I still feel it's a rather tawdry trick to present the new order of social care as empowering and embracing, when in fact services are being hacked and the things that you can actually have under 'personalization' are in practice very limited and hidebound.

I'm doing it because there isn't any other option. Personalization is now the only game in town so it's a game I have to play to ensure my son gets the care he needs - and in the end, that's all that matters. 'If you sup with the devil, be sure to use a long spoon.' - well I'm currently crafting the end of a very long barge pole into a small scooped out eating implement. I still don't like 'personalization' as I feel it's a clever con trick to make the public feel social services are 'doing the right thing' and giving disabled people and their carers the means to do things better themselves; when in fact they're simply cutting the money available, excluding more people from services altogether and 'allowing' those left to 'spend' their often reduced personalized budgets on very limited things, under very heavy constraints.

If 'supping with the devil' is the only way my son is going to get his care, I'll do just that. I don't look forward to the meal and I strongly suspect it won't be very palatable. When you're hungry, you tend not to be too fussy about the menu.

DIY social services

So in the end, we called the meeting ourselves. It took some cajoling and pressure to get health and social services to attend - and not all the right people came - but we did get some progress, I think (hope). We got them to agree that what we needed wouldn't cost any more than it did now, but would improve our son's care back to where it used to be. They seemed to accept that a care review shouldn't drag on for over a year and involve x3 new social workers. They agreed in principle to these things - I'm just sceptical they'll stick to their principles. I've circulated some notes and set a deadline. What I suspect they don't realize, is that I intend to enforce the deadline. I really do have political and administrative and complaints actions lined up if they backtrack or drag their feet any more and will be bringing them into play at the first whiff of a service cut suggestion.

It's very odd being the one who's driving this process as a carer. It's empowering but at the same time disturbing. It feels wrong being the one who needs the service (on behalf of my son), being the one who organizes it's provision. The whole thing should be being organized by the commissioning authorities - it was they who started the review off and caused all the problems. The fact that they are now so understaffed they can't finish what they start, and don't even seem able to talk across the office to one another doesn't fill me with any confidence.

They did try to set this meeting up, but couldn't sort out a date, forgot to book a venue and then tried to cancel altogether because they couldn't work out who to send. In the end I had to take over and book a meeting room, establish who needed to be there, invite them and talk to them to stress the importance of their attending and even then, one key participant had only come on board hours before without reading any of the papers. Part of me feels it's a cynical ploy to distract my energies so that they can continue prevaricating and letting the care package deteriorate, (and I'm planning on the basis of not allowing that to happen) but I think really it's sheer chaos, lack of communication and incompetence within the authority offices.

The thing that really gets me down is that they feel it's fine to do all this from the paperwork alone. I'm not sure how well having our son in the meeting went down (he slept right through the proceedings) but he is what it's all about. If all it's done is drive home the point that there is a real persons life at stake here, it will have been useful.

Keeping up the pressure

I think we're starting to get somewhere - maybe.

After pestering, cajoling, organizing for them and applying various forms of internal and external pressure, Social Services started by trying to bulldoze our sons review into a cuts exercise. They are now starting to agree that what is needed is not any less, or even any more money, just reallocate it a bit to get the care needed to happen. Some of them now seem to think that this was their idea, and it's in his best interests. I'm perfectly happy to let them take the credit - as long as my son gets the care he needs.

Health are a different matter. Far more intransigent, ruthless and uncaring. Much more interested in getting the boxes ticked, cutting the costs and protecting their own personal backs than having any real interest in our sons care. And far more willing to use their power regardless of the impact it has - even when it is detrimental to the care. Much more hard nosed and uncaring. A different set of strategies needed here - facing them down rather than reasoning is all that gets results. May need to call in the reinforcements here - but they are primed and ready. Public embarrassment and the threat of legal action are a last resort, but ones I'll use if I have to.

It feels like a power game, and I'm sure it is for them. The difference is that I'm willing to lose the game as long as I win the battle for his care. It always surprises me how far from the real care these people are. Winning for them is keeping their egos intact and shutting up a troublesome advocate. Winning for me is getting the care right. If we both win - fine. If they think they've beaten me - fine. The secret is to keep in the front of your mind what you want - don't get sucked into their power game. You can win by ignoring their rules. It's the care that matters, not who thinks they've won.

A week of fireworks

After an initial 'slow burn', the blue touchpaper we lit with Health and Social Services eventually produced a few fiecracker like pops befire turning into a series of roman candles. The recommendation to wear gloves and hold at arms length is something neither Health nor Social Services seem to have heard of, and there are now a number of professionals jumping around shouting with rather singed fingers. We're spending some time trying not to be hit by the random explosions as they wave the fireworks about.

And it's not even November 5th yet.

So far, the demand for a meeting, and subsequent pressure on key officials has produced -

• two assessments - one a year out of date, the other grossly insensitive, misleading and possibly libellous
• a substantial number of officials denying they are in the office whilst setting up decision meetings in secret
• considerable further damage to the little trust we had in either organization
• a number of officials taking unco-ordinated and often ill considered action which could be construed as duplicitous, but I hope is simply limited competence and poor information
• the beginnings of limited remedial action given grudgingly

All this reaction having taken place on the basis of paperwork only (well, less than 30 combined 'contact minutes' with our son himself)

Things have been stirred into action and the care review is at least live enough to get out of the way now. Getting it completed and making sure his care needs get catered for is still a series of battles further down the war. I honestly wish we didn't have to do things this way, but being reasonable, or even forceful, simply hasn't resulted in any action.

I'm afraid there will be some casualties in this - unfortunately these may well include some well intentioned 'footsoldiers' - and I'll be sorry about that. But I won't apologize for taking the action - this isn't about the tidiness of their paperwork - it's about my sons care. The front line Health & Social Services may well finish up with some bruised egos, they deserve better leadership and I'm in no mood to sacrifice the quality of my sons care just so they can have a quieter life. Their managers have rather thicker skins, bigger offices to hide in and surprisingly (even to me) far more ruthless personalities.

There are now a number of balls in their court, the next few weeks should be 'interesting'. (in the sense of the Chinese curse - 'may you live in interesting times'.)

Lighting the blue touchpaper

So, having had little or no progress on the review of our sons care package (which we didn't ask for and don't want - but which is damaging his day to day care) for over a year now, we've decided to take things into our own hands.

We've set up our own meeting, calling in Social Services and the NHS to sort things out with ourselves and the care providers. I'm giving it a few days for the commissioners etc. to get back up off the chairs they've probably fallen off and will then be pursuing each of them individually.

There seems little or no concern for the amount of stress and uncertainty delays like this cause. The reasons are perfectly simple - both health and social services have sacked so many ground level staff that they are simply unable to do the jobs that even they want to do - i.e. cut services to vulnerable people. Both organizations seem to be in a total state of disarray at present, and actually providing services seems to not even be on the agenda. The best they can manage is to hope that the providers they pay will do it for them and not screw up. Both our providers are doing a good job, partly because we are actively involved in his care, but it often seems to be in spite of, rather than because of the statutory authorities who should be responsible.

So far only the health and social services footsoldiers have responded - in both cases saying they are actually doing things in the background (but invisible to us). I have some sympathy for these people but I'm afraid I'm not going to let that stop me pushing for action.

The world has moved on since last year and his care package no longer fits the real world - and we're the only ones in a position/willing to pick up the pieces. It's a real problem for us - it must be even worse for those without active, day to day advocates or concerned relatives. The abuse at Castlebeck was also a result of statutory authorities distancing themselves from actual care - there are going to be a lot more of these sort of things with the health and social services disengaging from actual care and being only concerned with commissioning (and occasionally child abuse.)

We shouldn't have to take things like this into our own hands, we've got enough to do as it is. Unfortunately no one else seems concerned enough to act.

... and pigs might fly

On the up side, a couple of pieces of specialist 'leisure' equipment we've been waiting many long moons for, are likely to be fitted this weekend, so that our son can enjoy things a bit. They've been a long time coming so I'm hoping it all happens - it has been promised before. (We actually paid for one of them three years ago but health and safety and the building industry managed to hold it up.) This is really important, it's about quality of life.

On the down side, it's been another week of meetings, reviews and 'Partnership Boards' are taking up lots of time and making glacial progress with the real practical issues. Meanwhile the cuts and 'efficiency savings' seem to take no time at all to implement. We have got the loss of Mobility Allowance on the agenda - it's booked for discussion in January. Important though this is, it's tedious.

Back on the up side, we now have both suction machines replaced - minor panic when we came to use the second one for the first time as it cut out almost immediately - turned out just to be uncharged so should be OK by morning. This is immediately very important.

On the down side, some of our nursing cover is again looking a bit fragile - no change there then. This is critical if it goes wrong, so it's more a worry than a catastrophe - just now.

One day, everything will be fine, all his services will be in place, fully staffed/equipped, nothing will have broken down, no one will be threatening to cut his services and all the flying pigs will be fully fuelled and coming into land in a neat formation ... one day.

Waiting and shouting

I've been sitting in waiting all morning for someone to come and service our sons track hoist (promised between 9 and 10 am today). No sign yet and no phone call to update us. We have to go out for a hospital appointment soon, so may not happen - again. I accept this isn't life critical, and everyone else has to wait in for deliveries that don't arrive - the difference is we have these things as well. I suppose having little money means we can't buy much that needs delivering, so maybe that balances out, sort of.

More critically, the rechargeable batteries on his suction machines (to keep his airway clear) are getting to the end of their life. This is life critical. We've been asking for them to be replaced for some time now and it's now got to the stage where we haven't time to charge one before the other cuts out. We have got one replaced at last, but only after repeated phone calls, a considerable amount of pressure and substantial stress. We have a promise of replacing the other one later.

This is normal - we have another piece of medical equipment that's been held together with sticky tape (come back Harry Potter's glasses, all is forgiven) for about 2 months. The replacement bit has just come off 'back order' and is soon to be dispatched we're told. It certainly isn't here.

This in a context where we have to plead to see a consultant about a gastric bleed in less than 2 months - after much pushing and shoving of GPs, local A&E and consultant we have now got an appointment. A care service review that has taken a year to progress very little only moves when we push it.

On bad days I feel the delay itself on things is a tactic to let him deteriorate so he'll no longer be a problem. This is of course paranoia and there isn't a conspiracy to kill him off - but that will be the outcome if we don't keep fighting these delays. My worry is for those other people with complex care needs, with less articulate carers or no close relatives fighting their corner. They presumably do die, quietly, in the back rooms of nursing homes or on hospital wards. At least my son has a life - but they should have too. (For hard information on the scale and seriousness of this problem, see the Mansell Report done last year by Kent University for the Depart. of Health. - It isn't just me being paranoid.)

Little by little, bit by bit

Yet another bit of the NHS failed us today. As a result of very aggressive antibiotics, our son has gradually been developing a serious side effect over the last few months. (This has happened before and is one we have to cope with from time to time.) Unfortunately it's got significantly worse over the last week. So we thought we'd better see someone about it. Our first approach via GP came up with a consultation in a months time - given the seriousness of this, we felt this was too long to wait. Our second approach - to GP and consultant got this brought forward a little.

But the problem got worse last night. So we asked the GP and consultant again this morning. I think the GP feels it's beyond his competence (and can understand that). The consultant isn't around until next week. So when it got worse, we had to resort to our local A&E. (Not our first mistake - but a significant one.) The nurse who saw us felt it was beyond her and needed a doctor. The doctor felt it needed a consultant but couldn't identify one available before the appointment we have. Net result - we were sent home with no investigations, no guidance, no treatment and having spent 3 hours in a casualty department to no purpose whatsoever. We were discharged just in time not to cause a 'breach' - so they hit their target - but it's hardly a success. He still has the problem and the NHS has passed the buck up and across the tree.

What really worries me is the increasing lack of willingness of people in the NHS to engage with the problem and the apparent absolute terror of taking responsibility for anything. The people were individually nice but seemed mainly concerned to pass the problem on to someone else. The doctors parting words to us were 'come back if it gets worse' - why, when they are not going to do anything? We will deal with this, but we shouldn't have to do so alone.

PS There were other frustrations like the passing on of incorrect phone numbers by receptionists and the half day closure of the surgery but these just made the whole process more irritating and were swallowed up in the larger overall failure.

Living in limbo

I keep wanting to post about progress on Social Services review of our sons care package - but as there isn't much progress, it's a bit difficult. We didn't ask for this review, we don't want it, but it's probably the biggest thing affecting his future care - and it's been dragging on for almost a year. The basic problem is that although both NHS and Social Services want his care package reviewed (we believe so that they can implement cuts) neither actually has the staff to carry it out (because of the cuts).

Part of me wants to just ignore it and let it die of neglect, but in the real world we can't. Things have moved on since the review started and bits of his care package (for unrelated reasons) are becoming problematic. In normal circumstances, we'd simply sort them out with the providers/commissioners - but because it's under review, we can't. Net results - he doesn't get some services and others fall back on us to provide because no one else will/can. They will get sorted once his review is sorted but meanwhile there's a problem, and we carry the extra load 'temporarily'. As no one is now paying for these bits (because we do them) this is effectively a cut - but no one wants to accept it as one.

I'm sure 'cuts by default' aren't anything new, but they are still cuts and they put on extra pressure. What's more of a problem is the uncertainty (added to the uncertainty about next years withdrawal of his Mobility Allowance and presumably a DLA reassessment). After a meeting yesterday, I'm now in a position to set my own timetable for progress on his review - whether the other parties will accept it remains to be seen, but I've got to start holding the commissioners to account, because no one else will.

I can do without this.

Expert carer - a status symbol

I'm a bit unclear whether the NHS are beginning to see things from our point of view a bit or whether it's just another admin. error. I seem to have had an invite onto a training course to help me be an 'expert patient' with a long term condition. As you're probably aware, I don't actually have a long term condition (if you don't count terminal grumpiness and an incurably black sense of humour), though I do care for someone who has, who's unable to speak for themselves or manage his own condition.

I think I'm going to regard this an opportunity and go on the course as an 'expert carer'. If it's a mistake ... tough. I should get something out of it and the NHS should get a perspective they weren't quite expecting. There is a real place for 'expert carers'. My wife used to be a nurse and I worked for a housing association, and we also have almost 30 years each specialist experience with our son. I suspect that's rather more training and qualification than most of the professionals we have to deal with, but it actually counts for just a little more than nothing. Carers, no matter how experienced, have no status when dealing with professionals in the NHS or Social Care system - and we're often treated as an irritation rather than a resource.

We do get the lip service of being 'consulted' about various things - usually at things like 'visioning events' where no real decisions are being made - but when it comes to one to one discussions/negotiations with professionals about actual care, the attitude is sometimes dismissive, rarely cooperative and quite frequently confrontational. I know respect has to be earned, but by my reckoning, it takes us about 2 years to earn that respect from each new member of staff - and with our NHS and Social Services staff rarely dealing with us for more than a year before they move on/get made redundant/are re-organized, we don't usually get there. They do however expect us to respect them from day one.

This is unfair and counterproductive. It could be solved by giving long term carers (anything over a year or two) a recognized status at least on a par with some of the untrained, newly recruited assessors we are regularly faced with. There are good Social Workers and good NHS staff, and they tend to be the ones with experience. Why can't the same respect be shown to carers?

P.S. Taking away Carers Allowance from people when they reach state pension age doesn't show any respect for long term carers.

There are disabled people everywhere

I watch the news about Libya and Egypt and Syria and worry. No you haven't come to the wrong blog. I see the disruption and worry about the people with disabilities living there. What happens to someone with a learning disability caught up in these events? Do people with physical and mental disabilities get through situations like this? What personal stories are unfolding, unnoticed by the news when people get separated from their families?

I assume it's informal family carers who carry the burden where there is a limited welfare state - maybe I'm wrong. The horrors of Rumanian disabled children under an earlier regime are well documented. Is it like that and ignored because it 'is old news' or are they isolated individuals, in separate families, left to cope as best they can, invisible among the political upheavals. 'Simple' things like power cuts, water supply problems etc. can be life threatening for people already on the edge - put violence and disruption on top and people who can't, or don't understand how to, run away, are likely to be some of the early casualties.

I know it's war and bad things happen but that doesn't make it any better. I don't have answers and I feel I should put something positive in rather than just bemoan the situation. I can only hope people like Medcin sans Frontiers and similar organizations are picking up some of the pieces and give them money to help - I don't even know if they're in war zones.

When you next see the news, think also of the disabled and the people that care for them, caught up in it. And if you can see a way to help, do so (and spread the word).

Life can be good

In the midst of all the care package wrangles - life goes on. And yesterday it went on fairly well. Because we can't take him on holiday (part of one of the wrangles.) we resolved to make sure he had a good number of special days out when he was well, and yesterday was one of those.

An important part was that he was awake for most of it. (Sleep pattern is in 'extended' mode at present - 48 hours awake, 48 hours asleep -ish.) Went to a good, hands on zoo that turned out to be very wheelchair friendly. He got to feel a python, was harrassed by lemurs, had a very close encounter with a cassawary and was licked by a giraffe. Avoided being peed on by a lion, didn't get bitten by anything and took in his surroundings most of the time - even on the journey.

A good day was had by all, with very few fits. Even the gastric bleed seems to be settling a bit. Only one minor problem with his feed pump and we enjoyed the day too. The whole thing made possible by a nurse voluntarily working a double shift - she know who she is - thank you.

These days are like islands in a sea of meetings, procedures, complaints letters and general harrassments and to be treasured greatly. Not sure what we'll do next year when he loses his mobility allowance, as it funds his adapted vehicle - but that's just another wave we'll have to surf when the time comes.

Mind the gap

Bit of a worry about nursing staff availability just now. One member of team ill, another having to take time off for personal reasons and others with holidays booked. Had our first bit of 'emergency cover' (i.e. we take over at no notice) for a while - not a problem yesterday and massively helped by another team member working 'above and beyond'. Can't help worrying about what's going to happen. Don't like relying on this sort of good will but thankful it's there.

There's the high probability that we'll have to pick up random shifts at no notice (probably consecutive ones), but as big a concern is the effect on his care quality. In these situations we have to use bank and agency nurses, and (with a few notable exceptions) some of them aren't as good or caring as his main team. The commitment of his main team is enormous and probably spoils us for the 'ordinary' care levels, but I still want the best for him.

Any plans we have now go on hold indefinitely. I dread to think what it would be like if we had to organize this, sort out payments, sick pay etc. as we would if we used Direct Payments. The thought of 'Personal Budgets' makes me very frightened. We'd have all the admin. and paperwork as well, just at the time we were under most pressure. This is why we don't want 'personalization' - it might work for some but not for us. It's a great theory but in a real world of limited resources (not just money - the difficulties of recruiting good staff) it isn't a 'cure all'. The fear of who would deal with all this if (when) we're not here is truly scary.

At least his health is still improving. Had a good first day out for some time yesterday, though the stomach bleed (caused by heavy duty antibiotics) isn't properly healed yet.

Out of the loop

Just swapped e-mails with another carer/friend. She's apologizing for having to drop out of the campaigning loop as her disabled son's condition has taken a turn for the worse. I understand her completely. I have to do it myself on a regular basis. As carers, we all understand and make allowances. It does mean we lose some battles because we simply can't be where we want to be to be heard because the care we do is more important than any meeting.

The people we find understand least are the paid professionals. This isn't meant as a dig at Social Workers etc. - it's simply a statement of fact. As a carer your first priority and prime motivation is the care - everything else comes second. There are very few paid professionals, no matter how committed, who would continue coming to work if the pay cheques stopped - and I wouldn't blame them.

It is however quite difficult when you raise an issue and are told, 'we decided on that at our last meeting - if you'd come you could have had your say.' I'm not saying that's wrong or that I have a solution, just that some understanding of the position we're in would be welcomed. I recently managed to instigate a working group to get a local issue on the agenda but then had to miss the first meeting for 'care reasons'. The result was that I didn't get told about follow on meetings and notes I'd sent in didn't get discussed. The working group has now gone off on a tangent and I'm going to have a battle to get the original issues back under consideration.

I offer this as a description of an unlevel playing field. I don't have a solution but it's certainly a problem. The extreme version of this is the carer who works alone and in isolation and never gets any consideration of their needs/views - and therefore no service. I know there are lots of them - I used to be one. I still meet them in hospital waiting rooms etc.. The more disabled the person you care for is, the worse this is likely to be - the most isolated and excluded tend to be those in greatest need (for the little evidence around, see the Mansell Report).

Carers and the severely disabled do need special consideration and more understanding than normal. It isn't easy putting yourself in their position but please try. Thanks.

Bitterness comes in many forms

Lots of things going on - most important, sons current health. We're now into the post chest infection, drug induced side effect rectification phase. Happens whenever he has a bad chest chest infection and has to use one of the more aggressive antibiotics. Grateful though I am to Dr. Alexander Fleming et al for antibiotics in general (he'd certainly not be here without them) - they are not an unmitigated blessing. The current one is quite corrosive and has resulted in a gastric bleed, (This has happened before, usually as a result of steroids.) so we're desperately altering his feed regime and stomache medication to stabilize things. Hopefully he'll get over this in a week or two and we'll have a period of reasonable health.

Life is complicated and painful for him and sometimes it gets me down not being able to take the pain away.

Meanwhile, we've put in a couple of formal 'yellow card' complaints about his feed system. One of which has resulted in a very apologetic 'complaints manager' speaking to us promising things will improve. I wait to be convinced. Talk on this is almost as cheap as the quality of their equipment. After some digging, I've managed (with a little insider help) to track down the NHS committee responsible for their contract and have had an approach made on the topic. It's time consuming and a hassle but money is what really impacts on them, so I'm 'following the cash'.

His official review stumbles on (one professional, in a public meeting, recently described the length of delay as 'obscene'). It doesn't seem to have made a difference though as both the key people from NHS and Social Services have declined to attend his annual operational care review as they're on holiday (where I used to work, if you couldn't attend at least you sent a substitute) - this obviously isn't high on their priorities.

It soon will be - I intend chasing this fairly vigorously in a week or so. I just hope they're rested from their holidays as they're going to be busy when they get back. (Holidays are not a luxury we, along with most carers and many disabled people, get.)

No apologies for sounding bitter - the care 'industry' has made me that way.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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'.

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.

Wildlife and the NHS

A weekend of trips out. We and/or his nurses have taken our son to one industrial visitor attraction, one sealife centre and a local carnival event and we're off today to a large bird sanctuary. The 'holiday' seems to be materializing. He's had mixed reactions, but not slept right through any of them. Seems to have got something out of things and health (apart from hay fever/asthma) is reasonable.

There is something the matter, as he's spiking the odd, slight temperature about once a day and the occasional extra bowel movement, but nothing specific we can put our fingers on. Checked out all the obvious things, chest, urine, boils etc. and his general demeanor is reasonable, just with these odd 'blips'. Just have to keep looking and get on with things. Even his sleep pattern isn't too bad just now - but something is niggling him and he can't tell us what.

Meanwhile, we're bracing ourselves for a major meeting with NHS over his care package this week where we should get an idea how they're intending to face us with his service review. No actual agenda - they just want to 'get their heads round his current care package' - that they've been part funding and part responsible for over the past 10 years. They attended his Social Services review, but as NHS have carefully not been paying their fair share, they seem to have managed to have very little record of his care and condition pulled together - despite his having x7 different consultants, many specialist health professionals involved etc. etc.. Part of me doesn't want to have this meeting and just let things drag on slowly, but without some resolution, we won't be able to get his nurses to help out 'off base' and a real holiday for him is out, his home nursing support is fragile and if (when) he's seriously ill again we'll be on our own again.

On the practical care front, we're still having problems with his gastrostomy (direct feeding via stomach wall) equipment. I'm fairly convinced the quality of the plastic has been reduced, resulting in repeated failures - with subsequent inflammation etc. but the dieticians insist it must be 'technique'. Given we and the nurses have been doing this for 10 years and the problem has only recently got worse, I find this hard to believe. Currently there's an uneasy standoff as dieticians have been moved/reorganized and our e-mails to them are 'bouncing'. NHS generally feels like it's in free fall from our perspective.

Anyway, off to see the wildlife. Put the issues to one side for a few hours.

Aggressive sleeping

Aggressive sleeping is a term coined by my daughter to describe what my son does on a regular basis. He came home to us this afternoon for a few days and has been doing it all evening. Basically it involves not waking up whatever the stimulus - he's sat through a couple of TV programmes, we've sat with him on the sofa, he's been toileted (and performed adequately), and had a bath. He has slept through it all and is now in bed still asleep.

This is partly linked to his non standard sleep/wake pattern - he can often sleep for 48 hours continuously or be awake for a similar period, but the basic pattern is idiosyncratic - i.e. no real pattern at all. It doesn't seem to do him any real harm (certainly compared to the other problems he has) and is more of an inconvenience for us and the nurses than for him. We plan special events for him, take him to exciting places arrange to visit relatives and friends - and sometimes he just sleeps through them. He has slept through concerts, swimming sessions and even horse riding in the past.

He does also do the reverse - staying awake all night etc. though this tends to be less of a problem - it does mean we get through a lot of story tapes and late night TV etc. but as long as there's something to keep his interest, he's usually fairly happy about being in bed.

Meanwhile the rest of the world trundles on its 24 hour a day clock watching. Sometimes I think he's got the right attitude - it's just not a very socially convenient one for everyone else.

Birmingham England (not Alabama)

I'm so glad I don't live in Birmingham. I've nothing against the place and the people I've met from there seem fine. But I'd find it very hard to live somewhere where the council was intent on not providing any services to disabled people that they didn't absolutely have to by law - and even then only provide the absolute minimum to maybe keep people alive.

Social Service Departments classify disabled people's needs into 4 categories - low, moderate, substantial and critical. Most SS Depts provide services for people with moderate needs, many are withdrawing services and only providing services for people with substantial or critical needs. A few, like Birmingham, want to restrict services only to people with critical needs. My own son is classed as critical, so he'd get some sort of service - but I'd find it difficult to live with myself where people with substantial, let alone moderate needs were left uncared for by the Local Authority. This is how the cuts are being implemented locally.

There's been a legal challenge to Birmingham, and they've been told this weekend, by the courts, in no uncertain terms that they are acting unlawfully. They've been told they didn't consult properly, that they are breaking the terms of the Disability Discrimination Act if they go ahead, that they haven't assessed the impact these cuts will have on disabled people and that they have a legal obligation to provide services - even if this means cutting costs somewhere else. This is good news of a sort - but I don't really want to live in a society where it's acceptable for the local politicians to feel that just keeping disabled people this side of the grave is good enough.

I really feel for the people of Birmingham - even if these cuts get rolled back a bit. There but for the grace of god .... Our own Local Authority would dearly like to send us down the same road - we're just luckier that we're starting off a bit further away. Thank you the real people of Birmingham for getting the courts to put a spanner in the works of these heartless politicians, lets hope this spanner can be mass produced to stop other areas doing the same thing.

Civil Rights turned a painful corner for black peoples rights in Birmingham, Alabama - lets hope disabled peoples rights can also see a turning point in Birmingham, England.

Don't get too organized

Did a quick mental stocktake yesterday of where things are at generally with my life/activities. prompted by having some non carer/disability things happening just now - support for daughter 200 miles away, mothers illness 30 miles away and visiting brother/sister in law 250 miles away. Everybody gets things like this cropping up, problem is for carers, they're on top of a full time (pre)occupation - can't call it a job, that would involve payment.

So on the 'normal' disability agenda this week, my wife spent most of yesterday assisting with sons health/transport - I got to do some non disability things as above. Today we have a meeting, along with other parents, with barristers about fighting the service cuts for our children. Tomorrow we have a regular meeting where Social Services tell us what they're doing - and complex care is on the agenda (and we tell them what is actually happening) - and I need to visit my mum. Thursday we're supposed to go to visit in laws - I'll worry about that later.

It's not the amount of things to do that's the problem - though there is a lot - it's the unpredictability of things. We don't know what the outcomes of these meetings will force onto us, and all the time there's our sons health and care - he's currently back on antibiotics and his gastrostomy is giving problems (poor quality equipment causing inflamation etc. as far as we can ascertain).

I think I'm going to stop stocktaking and go back to crisis management, it's not good for my mental health.

PS Writing this brings into focus for me how much we have to do because of the cuts - it's not just the cuts in service, its the concern around them and the spin off work we have to do as a result that isn't actually care. This I really do resent.

Hardest Hit protest

Just wanted to add my support to the Hardest Hit protest being held today in London. My son isn't well enough to travel that far and I need to stay here to help with care. I'd be there if I could but like many disabled people and carers it just isn't possible. Thank you to the disabled people who are protesting against the cuts for us. There is a virtual protest on Facebook if you want to support that way - on.fb.me/lcs3jh

The reports seem to show a good humoured march with a few high profile people, people 'chanting' in sign language etc. Wish I could have been there. Having said that, there's so far little report of it in the mainstream news - I suppose that comes of not breaking windows. I believe this is the beginning of a movement where disabled people and carers start standing up for themselves - even if they need a frame or a chair to do it. The cuts for us are real and hitting already with local authority service reductions, closure of facilities already happening, care packages being called in for 'review'.

If you're disabled, stand with us, if you're not, stand alongside us.

By appointment

Half hour trek each way to wheelchair clinic for ten minute consultation on damaged footrest to our sons wheelchair today. (Normal wear and tear on chair.) It's being mended - the meeting was to agree it, not to actually mend it. It'll be a month before we get a replacement. (Normal wear and tear on time.) Meanwhile we had to be in two places at once as usual, so I did the wheelchair, while my wife did the NHS meeting.

These consultations are important and we wouldn't want to miss them, and for people with a disability and their carers it's normal life. My own assessment is that we do about three appointments (each about half a day each) every week. They're all important but they do take up a large part of our and our sons life. (not to mention his petrol - todays wheelchair trip was a 50 mile round trip, no expenses claimable.)

In an ideal world, we'd have one professional who we could contact with all our problems and they could get things agreed/authorized as necessary - but the world isn't like that. So we'll just have to continue shoehorning our life around the professionals. Getting a life is hard when most of your time is taken up in waiting rooms, meetings and consultations.

We did have one minor success - our very helpful occupational therapist agreed to attend the wheelchair clinic as well, and while there, agreed also to sort out some problems we have with a damaged hoist sling and supplies of some medical equipment we'd been sent the wrong thing for.

In the main, the people are helpful (in the main!) - it's the systems and beurocracy that make it hard work.

P.S. Why is the medical profession the only one that gets away with being always massively late for 'appointments'? If your solicitor, bank manager or other professional made you sit in a grubby waiting room for three hours every time you went there, you'd be upset - the medical profession seem to be alone in their total disregard for the value of other people's time.

Not on holiday after all

So, all togged up and ready for first major expedition of his 'holiday' week (or so). But he decides otherwise - two major fits (even for him) and some low oxygen saturations put paid to that. So we'll go another day. He's slept most of the day anyway, so wouldn't have got much out of it.

It took quite a lot of organizing - we had to take our own hoist etc. and two vehicles, one for him in wheelchair and the other for his equipment. As it turned out, all we did was pack it, take it over to him and come back to unpack it. At least we didn't spend the (very expensive) fee for the specialist activity help but I had to explain at length why we had to cancel at short notice. They were very understanding and we will be going back.

You become quite a gourmet for humble pie being a carer - I don't particularly enjoy it but it's often the main course.

A sort of holiday

This is the week we've designated for our son's 'holiday' to start.

The CQC registration rule changes mean he can't go on holiday as his nurses aren't allowed to work 'off base' (we're working on this one) so we've decided to have a couple of weeks where we concentrate on taking him out for extra special exciting events. We've got one today, one tomorrow and one Friday planned - all short notice cancellable due to health - and wakefulness - and his coping with the extra activity.

It makes life a bit complicated, having to fit things around hospital etc. appointments but the biggest problem is the danger of him not getting a 'break' because he has so many other commitments (mainly sitting around in hospital waiting rooms or attending meetings about his care).

He's gone a week or two now without antibiotics and, touch wood, his chest still seems OK. The hay fever is sparking his asthma off but he's generally in better condition than he was.

It's going to be a bit hectic with all this activity and organizing, plus his normal appointments and helping our daughter out (who more than deserves our time as well), so apologies if I don't post as often as I'd like. At least his review seems to have stayed quiet - I'll have to kick it into life again once the rush eases.

It wasn't until we had our son, that I realized how quickly life can accelerate on you - it's a bit like being on a treadmill, but with gears.

Out of the frying pan - into the warming oven

Last week or two has been a definite improvement on previous few months. Sons chest infection seems to have cleared, and even better, we've had his sister visiting for a week or so over Easter.

We still have problems with his breathing etc. - they're a bit different now we're getting into the hay fever season - but he's not continuously in distress. One we hadn't seen before looked suspiciously like a 'panic attack' - hyperventilating and very high pulse rate. We used all the treatments for asthma, including oxygen, panadol etc., even 'paper bagged' him briefly but what seemed to work was slowly talking him down. Difficult to pin down though - it could have been the treatments kicking in. Not being able to tell you what's going on is a real problem and educated guesswork is all you've got to go on.

He's had his 3 monthly botox to ease his hand and wrist contractions - really works. His nails used to cut into his palms and cleaning them properly was all but impossible. These days they're much more relaxed and we can get rid of the 'cheesy' smell. (This is what comfort and dignity is really about.)

Meanwhile in the background, the cuts rumble on. Three meeting last week and not looking forward to the upcoming one with the PCT over reviewing his care package. We're going to have to take on responsibility for employing nurses etc. for part of his care as no one else will under the new CQC registrations - getting that funded while stopping them reducing his care package should be 'interesting'.

In the end, however well meaning the care provider, it comes down to relatives and carers to fight his corner. I really worry for the ones who don't have family or aren't articulate and stroppy enough to make providers/funders do what's needed. I know some of them. We do what we can to help but we simply don't have the energy to fight everyone's battles. I think he'll be all right if he outlives us - his sister can be just as determined as we are, but I don't want him taking over her life as well. They both have a right to an independent life.

So, maybe this time of panic over his health is easing and it's back to the war of attrition. It's not a war we look like winning - not being forced back too far is as good as the vision gets just now.

Credit where it's due

I've been pleasantly surprised this week by some unexpected progress on our sons multiple broken chairs.

A man in a van, from wheelchair services arrived unannounced to fix his wheelchair footrest - it's been replaced with a second hand one from a wheelchair no longer needed. It isn't perfect but it's a lot better than it was, and it will get him through to the proper replacement being re-assessed etc.
Thank you.

Another man in a different van, also rang us up to see if we were around so that he could alter his postural support/drainage chair - for this we dropped everything and made ourselves available. He did the alterations his previous boss had assured us were impossible in about an hour. There may now be another problem with the chair due to the alteration, but it works and he's comfortable in it.
Thank you.

His toilet chair simply needs a replacement part for the broken bit.
It is still broken.

Two out of three isn't too bad.

The problem with chairs

I'd never have thought sitting down could be such a problem. But it is. Our son has a number of chairs - a wheelchair for sitting in and moving around in, a postural seat that doubles as a 'comfy' chair and a 'standing frame' for chest drainage and a toilet seat - you can work that one out yourself. And all three are either problematic or broken at the moment.

His wheelchair footrest (non standard chair) has obviously been driven into something hard and got badly twisted. We've had maintenance out twice, who hit it with various sizes of hammer but it's still too bent to support his feet properly. So we now have to get the manufacturers out to 'assess it' - but not until after the next wheelchair clinic (not sure when that is yet), after which there will be a delay while someone finds a budget to get it mended out of, and eventually it will get fixed. It's been damaged for about a month so far and looks like another month or two before it gets mended. This is normal.

His postural chair has never been quite right as it's too tall for his chest drainage position. It's taken about a year and various 'bodges' and 'adjustments but the manufacturer has just agreed it can be altered without invalidating it's 'integrity'. The engineer has therefore cut 4 inches off the frame and it now works. I wanted to do exactly this myself, at no cost to anyone a year ago, but that isn't allowed. This also is normal.

His toilet chair was a more entertaining problem. The bracket holding the 'pot' had broken. It still worked if you put the pot on the floor, carefully positioned for a 'long drop'. The menders turned up last week and fitted a velcro strap to footrest - no idea why, bracket is still broken. Bemused and cross phone call later and they should be coming back to do the right mend some time soon - we hope. Normal service has been resumed.

All I want is for my son to be able to sit down normally in something that isn't broken.

One day I'll tell you the saga of the gastrostomy feed system.

Saving energy

Chest infections clearing - hopefully, after some problems. Residual bits causing discomfort but not too much distress. Priorities now are to make sure his chest stays clear, he's kept as comfortable as we can and he gradually gets back to 'normal' (whatever that is.) doing things.

Last few weeks have been a fairly continuous round of physio, antibiotics and worry. Some of the time he's been with us - so we got to worry at first hand, but doing his care at least kept us occupied and feeling we were doing something positive. The hardest parts were when he weasn't here with us. Someone else was doing the care. We stayed with him as much as possible but had to come home at some points to eat and sleep. Being on the end of a telephone isn't the same and we ended up calling and texting for updates at what must have seemed to his nurses, unnecessarily frequent intervals. It isn't that we don't trust them, it's just that he's our son, and when you can't sleep at three in the morning, a bit of reassurance is more effective than any amount of temazipam.

Back in the looking glass world of service cuts, our council has just withdrawn funding from all the local CVS projects to save money, so all the carers initiatives (support for young carers, elderly carers, carers networks, learning disability advocacy, communication help for non verbal people, volunteers etc.) will stop in June as CVS is forced to close down. I thought carers and things like CVS were The Big Society -apparently not. The effects havn't hit us yet - we'll cope with the fall out when it does.

Right now I'm just tired but hopeful that his health picks up. Campigning will have to wait until normal (or abnormally high) energy levels are restored.

Care - both sides of the looking glass

Things are a bit better. Heavier antibiotics gradually clearing chest, beginnings of side effects. Thrush (manillia - fungal infection) is fairly inevitable in a number of locations on this level of treatment, treating topically at present but will move to systemic treatment once antibiotic course over. Bowels disrupted - started loose, how getting constipated (again this is usual - but needs dealing with as discomfort can cause more fits). Antibiotics interacting with anti epileptics anticipated any day now - more fits. This is the usual aftermath of a severe chest infection. Bigger issue just now is his exhaustion and deep (almost comatose) sleeping which brings very shallow breathing, sleep apnoeia and sudden drops in O2 saturations as movement of infection/secretions gets moved about. Life gets complicated sometimes.

Re-reading this, it doesn't sound very good, but it's what you come to live with. Hopefully he'll be better in a week or two and back to what passes for normal in our world.

Meanwhile, I tore myself away for a few hours to attend a carers meeting. Where we were told -

• the service cuts are inevitable as the council has no money - by our cabinet councillor
• the health service is in disarray locally and no one is sure who's responsible for what - by the PCT
• all's well with care regulation, except they aren't concerned their changes have lost us a service, they don't regulate day care at all and they'd like to inspect all care providers but they don't have the staff - by CQC (Care Quality Commission)

I went out tired and came back depressed (not clinically - can't afford that.)

At least helping with his care is doing something positive.

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.

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.

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.

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.

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.)