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.