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.