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.