Bit of a worry

4:45a.m. phone call. Adrenalin wake up. It's OK, but he's started fitting quite a bit and new nurse on first lone night shift, so wife goes over to support. Glad she rang - rather a broken night than a fits out of control or a nurse who isn't happy with his care.

So, wife goes over there and I get to stay here sweating (one parent is support, two is pressure.). I know she has the harder job but it's still hard waiting to hear he's settled - or not. No point sleeping now - not that I'd be able to.

I know he'll be OK, he's done this lots of times. It's just the not knowing doesn't get any easier. I should see this as an opportunity for 'spare time' but too hyped to do anything productive.

Sleep well it could be a good sunrise.

Nursing by numbers - sorry, wrong number

In a rare idle moment, I saw this article on the BBC news website http://www.bbc.co.uk/news/health-11097822 It's all about fears that elderly people getting malnourished in hospital. I'm afraid it got me rather angry. This is simply a different manifestation of what Mencap found in their 'Death by Indiference' report on people with learning disabilities in hospital. What really got my ire up was the perennial assumption, seemingly by all concerned, that this could be solved by monitoring and procedures - introducing red trays etc. for people at risk.

Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.

Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.

I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'

Rant not over - it's not over until the thin lady dies.

Beating people can be good

I don't think I'm a control freak, but I'm probably not the best person to judge that (or if I am, I probably am the best judge!).  But letting other people take responsibility for my son, and not knowing how he is when he's ill is really hard.  As I've said before, we have a really good nursing team, but he needs a lot of chest physio just now to prevent the infection re-consolidating.  They're good nurses but variable at doing physio, so we find ourselves going in, even when he's not officially with us, to do extra physio and PEP.  We try not to offend them but I'm afraid a bit of irritation with mum and dad is a small price to pay for an uninfected chest.

He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired.  The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical.  Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.

PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections.  On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently.  It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs.  It doesn't shift the debris - that needs something physical, like coughing or physio.  I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs.  I know physio is often prescribed, but the amount is usually trivial and not available at weekends.  I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).

The Big Issue

Daren't comment really, but son's chest may just be improving a bit. Antibiotics down to one - I think that's making him more comfortable. Intensive PEP mask (Positive End Pressure) physio and lots of 'rebound' therapy (specialist physio on trampoline) should stop it re-consolidating. He's certainly been less washed out today. Still too tired to do more than a couple of hours of anything but he did get out to see his friends today.

Apologies for not commenting on 'bigger' issues - I'm sure things are happening on the national policy front etc. but when things get like this, I'm afraid there is only one big issue for us - life will still be there when we come back to it, and if it's not we'll deal with it's absence then - or not. (I really didn't expect to get all metaphysical but the residual gray gunk that passes for a brain these days sometimes goes off on one itself.)

Everyone worries about their children

The chest goes on. He's really taking a long time to pick up from this infection. We're still doing whatever he enjoys - he went to a multi sensory environment he loves over the weekend and although the trampolining is really physio, he enjoys it so much we're making sure he gets as much of it as he can. He gets weary though and is too tired to do much. One session every couple of days takes it out of him and he has to sleep a lot to recover, on oxygen much of the time. He is a little better each day, and on the strength of that, the doctor has reduced him to one antibiotic. It does look like he's pulling round but times like this always remind us that it's his chest that is the real high risk factor, with his fits a slow second.

Sleeping and waking times for him are 'interesting'. He sleeps whenever he wants to, regardless of day or nightime. He has been known to sleep solidly for 48 hours and then stay awake for the same amount of time. He'll often be awake during the night and asleep all day, we've tried to get a pattern worked out but it really is random. One particular feature is that he actually has three 'phases' - awake, asleep and 'aggressive' sleeping (when he has muscle tone, but refuses to surface whatever stimulus you put in.) Unfortunately there also seems to be a fourth phase emerging where he goes into such a deep, unrousable sleep that his oxygen saturations drop alarmingly - we're hoping this is just a temporary feature of the chest infection and will clear as his airways 'block off' less with the secretions.

Unsung, unpaid - unstinting

I'm embarrassingly aware that there's someone I occasionally mention here who gets limited recognition for the major part she plays in my sons care. My wife has looked after him as the main carer for 27 years - I really just do the fetching and carrying and some of the unskilled mucky jobs. (When a nurse lost her new gold bracelet, it was my job to go through the clinical waste bag until the glint of precious metal became visible through a discarded protective glove carefully packed away inside a dirty continence pad - who said caring can't be fun.) Before the kids, my wife was a very well qualified senior nurse and now effectively acts as 'clinical lead' in most of our sons care, though many of the professionals with less time alive than she's had in nursing, still find it either difficult to acknowledge her skill or feel threatened by the depth and breadth of her knowledge. She still organises his drugs, does much of his care herself and takes over completely the shifts they can't cover, etc. etc. etc.. I help out as much as I can but she's the real lynch pin of this operation.

We've been told by medics, in the nicest possible way, that it's her fault he's still around. Before we had the care package, she worked 24/7, sleeping only in patches. I did what I could to help and at least I got to 'escape' to work during the day - she never had that luxury.

And for all this, she gets paid nothing. Now we're both retired (officially) even the pittance of her Carers Allowance has been taken away - it wasn't much but it did recognise what she did. Nothing in the care changed on her 60th birthday, but she was no longer officially valued. It doesn't make us that much poorer financially, but I really resent this - she's massively undervalued as it is. Oh, and we still have to fill in all the DWP forms every month (despite not getting the benefit) in case it affects his 'passporting' to other benefits and the empty lever arch files at headquarters start feeling peckish.

Beating his chest

Chest infection continues. Bit of a worry really as he still has some spots etc. that usually clear up with the antibiotics - doctor feels he's quite run down. Presumably infection main is viral and antibiotics are just breaking up any bacterial secondary infections. It's up to his immune system to clear the viral part. Physio helps clear gunk - particularly the stuff he gets on the trampoline a couple of times a week with ordinary and PEP (positive end pressure) mask in between.

The physio he's had has been a literal life saver as the recurrent chest infections would have taken over long ago had it not been for this progressive and intensive physio regime. Unfortunately none of it is provided by the NHS - the charitable service provider that does his day care employs a specialist physiotherapist full time for the people they deal with and it's pretty much down to him - we owe him a lot. When he took a well deserved holiday, all the NHS could provide was two basic sessions a week and they were unaware of PEP and unable to do the trampoline physio. The people were well meaning and good as far as they went but it worries me that the mainstream service is so poorly trained and overstretched these days.

Back to relying on charities - come back the workhouse, nothing is forgiven.

Life goes on

Apologies for absence - life sometimes takes over.

Son's chest infection appeared to be improving but reconsolidated when we changed antibiotics. Not back to square one but definitely didn't pass 'go' or collect £200. Back on the x2 stronger ones and looks like its helping - going by the muck coming up.
Meanwhile, had to take out a couple of days to help with major life changes/stresses for daughter 200 miles away. She's as important as he is and it feels bad giving him all the attention. She is incredibly self sufficient and deserves better.
Meanwhile again, storm in teacup about paperwork/admin. for a minor drug has blown up into a storm in a swimming pool, with much tears and stress it is now down to a storm in a large bucket - hopefully. 27 years of care experience counts for very little if the paperwork doesn't fit these days.

All this goes to prove that life does go on - it just isn't a lot of fun sometimes. (Oh, and on our first evening out for about a month, we won the pub quiz - so there must be a god somewhere, I'm glad he has the same sense of humour as me.)

Not very happy campers

It's been a fairly torrid time over the last fortnight. Quite a severe chest infection and he's still on low level oxygen, but seems to be on the mend. We've had to nurse him ourselves at home, largely due to staff sickness meaning we didn't know whether the next shift would be covered or not. In some ways I don't mind us being the fall back - it keeps us close to his care and someone has to provide the continuity, but it would be nice not to have the continual uncertainty about how many shifts we were covering back to back. We get exhausted increasingly quickly these days and are finding we need more days to recover from what we could have done without too much trouble 10 years ago. Some of it's the physical strain of 'moving and handling', some of it's the nursing work needing concentration on medication and treatment but a significant part is simply having him there 24/7 with or without other professionals working in our home. There's no privacy and I begrude that. It isn't any fun camping out in your own home - but it is necessary.

A minor irritation

When we took son to the hospital last week, he had to go for an x-ray. This is always good for a laugh as his spine shape and heart totally obscure his left lung - where the problem always is, and the hospital can't get the plates in between him and his moulded wheelchair - the shape of his spine means lying on the bed is out.

This time was even better. The Medical Assessment Unit was heaving and grossly undermanned. But they had to call a porter (who wasn't familiar with driving his attendant controlled, powered wheelchair) and insisted on sending a nursing assistant escort as well (who hadn't been told why she was needed). So off we trundled in convoy, with me driving the wheelchair, wife managing the suction, porter in front feeling like a spare part and nursing assistant behind wondering why she was there. They were very nice people and it wasn't their fault - but we really did know where x-ray was.

Why they hadn't provided a siren and a couple of motorcycle outriders was not explained.

Going with the (oxygen) flow.

It's been a heavy couple of weeks but it looks like we can see a bit of normality coming back. His chest has been two steps forward, one step back but he went quite a few hours off oxygen this evening without his oxygen saturation falling much and seems really alert just now. The consolidation on his lung seems to have cleared - the steroids have finished without a gastric bleed and his antibiotics finish tomorrow, so we'll be concentrating on physio to keep it that way. (His own physio is on holiday but still texted us from the beach to see how he was - we told him to get a life and a tan. He's a classic example of a brilliant, caring and dedicated professional making up for the deficiencies of a 'one size fits all' system.) Fits don't seem to have kicked in this time, thankfully.

Staffing also looks like it's starting to settle with people gradually coming back to work after various sicknesses. He's still at home with us but we're looking at possibility of going back to his own house in next few days if he stays well - assuming there are enough nurses to cover.

It's still a case of hoping the light we can see is the end of the tunnel - it could still be an oncoming train.

Still falling - it's a long way down

We're at last getting to grips with sons chest infection. IVI (Intra venous infusion - a drip) antibiotics combined with steroids seem to be making some headway but recovery is very slow.

Meanwhile, nurses are dropping like flies. Some seem to have same flu like infection though not as bad obviously. Net result has been no cover so he's at home with us, sometimes with, sometimes without nurses. All very unpredictable and wearing. Needs a lot of care when like this - physio, suction, checking oxygen levels etc. on top of normal stuff. Oxygen saturations have been quite poor so using oxygen concentrator most of time at present. Sleeping a lot just now as seems exhausted with coughing, but at least it isn't a nasty green colour now.

A nurse we thought was still ill has recovered so we're going to get a decent sleep tonight (as long as he doesn't throw another 5a.m. 'wobbler'.) Everything else on hold.

Don't get ill if you're disabled

Chest infection has consolidated on one side - so six hours in Medical Assessment Unit to midnight last night and now on intravenous antibiotics. As usual, he emerged from hospital significantly worse than he went in, as he had been stuck in his chair for six hours and the lack of movement had made his chest worse. Unable to toilet him there - no appropriate slings etc., no bed and IV drip took two and a half hours and had to be held in place by us all the time. Asthma deteriorated significantly with stress/conditions, though not fitting too badly - yet. We go back there twice a day for rest of IV for rest of week - joy!

Hospitals don't work for people with disabilities. They're geared up for 'normal' people who are ill and can't cope with disability.

Oh, and after three days without support, still no prospect of a replacement nurse for day care. Don't get ill if you're disabled - and don't get a life either.

Falling over in slow motion

Difficult time to post - will probably do something more when time and problems permit.

Wife largely, though not completely, recovered from hospital.  Son has developed serious chest infection we're only slowly getting on top of (hope not to be a repeat of Jan/Feb/Mar) - one result was a 5a.m. rush over to help staff on duty.  Same infection that gave him chest infection has given care staff 'flu' symptoms so major staffing gaps.  Fall back plan for covering staff sickness has fallen back and fallen over.  Carers not allowed to be ill - we have same infection but don't get time off, so now nursing sick son at home whilst ill ourselves and one of us still recuperating from major hospital episode.

Life's a bitch sometimes.

Normal - ish service will be resumed

Apologies for my absence. My wife had a sudden hospital admission, so along with shopping, meetings and other non essential activities (unlike caring, cooking, visiting hospital and housework), the blog had to stop for a while. Normal service probably never existed, so can't really expect its return any time soon. Anyway, she's now recuperating at home and supervising care services and domestic activities - it's at times like this I start to realise how little I actually contribute.

Meanwhile, our sons services sort of carry on. A nurse with one service calls in sick, so the other service picks up slack because the contingency plans are still not working. He missed a bit of his activity that day but got an unexpected lie in instead, otherwise he seems to have sailed through things reasonably - including a visit to his mum in hospital, which he slept through 80% of. Some care quality issues with an agency nurse (some are great, some not so great.)

This afternoon it looks like he's developing another chest infection, so back on the antibiotics. He's done really well lately, with a four/five week break since he last needed them. It may well explain why he's been having a few more longer fits at night that we were starting to get concerned about. The discomfort would have been enough to trigger them.

Anyway, back on the treadmill - need to find out why newly appointed nurses still not coming on stream - probably CRB checks.

A bit edgy

Had a short, sharp reminder of how quickly things can change over the weekend.

Our son had had a pretty good day, a bit sleepy, but it was weekend and he is 27, so a bit of a lie in shouldn't be too worrying. Took him to a local event and had a pleasant chill out in the garden afterwards, and then some TV in the evening. Then late that evening, he had a major fit, not unusual, he went quite blue with it, again he does this sometimes, but we think he must have aspirated (breathed in some of his secretions) as his oxygen levels dropped through the floor. We spent the rest of the evening trying to get them back up and stabilised - we have an oxygen concentrator etc. We think he'd aspirated and the secretions were 'blocking off' a portion of his lung. He did settle to a reasonable level eventually, but it took some time as he didn't seem to want to cough properly. Kept him on oxygen overnight and he's been fine since.

Had to fend off all phone calls etc. so some people probably think we're a bit rude. It's times like this that remind us how fragile things can be.

The devil in the detail

Ordinary problems can so easily become major issues if you've got 'complex care needs'.

We've lived in dread of the hay fever season for many years. If our son was 'ordinary' it would be a significant inconvenience but as he over secretes with the pollen, he can't just swallow it or blow his nose like you or I. There's a 50/50 chance the fluid will go down his airway - and that's a real problem. He starts to choke (that's one reason why we need to suction him, and contributes substantially to his recurrent chest infections.) and that distresses him, so he has a fit (and we need to deal with that if he has too many or they last too long.) so simple hay fever gets to be major intervention.

He's developed a blocked sweat gland under his armpit. A bit painful if not controlled but no big deal. Unless of course you can't tell anyone it hurts until it becomes an obvious lump, and you start fitting with the pain. So we treat it with antibiotics and panadol. Now if it gets established and too recurrent, an ordinary person would just have surgery to remove the pocket, but because of his fits and his damaged lungs, he's a poor anaesthetic risk. Any surgery then becomes a major life risk. So that's not an option we want to think about. One day we may have to, but for now the antibiotics and pain killers work.

These are just details in his condition, but the devil really is in the detail here. And there's some little devil going to get a pitchfork right where it hurts if I finish up in the furnace.

We are not alone

The lady who went on hunger strike (Mrs Cavill-Burch) over lack of care and support has my sympathy. I can hear the public now - 'this can't be happening in our society in this day and age' - but it can, and it does. It did to us for 19 years. We have a service now, but like her spent many years suffering acute sleep deprivation. At one point a District Nurse confiscated our car keys as she felt we were too tired to drive safely - but it didn't get us a service. We didn't try hunger strikes - just didn't think of it - maybe we should have. We got our service after much shouting, embarrassing the local Authority and NHS in public and setting it up ourselves with the help of two local charitable providers. I suspect there's little help we can offer Mrs Cavill-Burch other than to say the publicity, though painful, may be enough to start the services off, but it won't just happen. If we can help, get in touch. For news report see BBC at http://news.bbc.co.uk/1/hi/england/cambridgeshire/10547319.stm

This subject is being raised in Parliament on 13th July at the All Party Group on Learning Disability meeting. The Raising Our Sights report is being presented there and for once spells out how big and bad this issue is. There's a copy on the department of Healths own website at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_114347.pdf

We are not alone, we're isolated. There are a lot of us out there but we're trapped in our homes doing the care, and are invisible. And the services (NHS and Social Services) find us too difficult to deal with because it is hard. So they ignore us, in the hope we'll keep quiet. And on top of this - the cuts are coming.

Not Valuing People

Just a heads up on a more than strong rumour.

If you have any involvement in the world of learning disabilities, you'll know that the Valuing People organisation was set up to oversee and ensure people with learning disabilities got good quality services and to promote best practice. It was the one 'official' champion that carers and people with learning disabilities could quote in the face of poor or reducing services. Their website has carried the 'this is under review' government cuts health warning for a while, but I understand that yesterday, staff at all levels, received redundancy notices.

The greedy bankers got us into this mess, it's going to be the suffering of people with disabilities that are forced to dig us out.

Seeing the light

It's a strange thing letting go. We've been building up my sons care package gradually for about 8 years. Prior to that we did almost all his care 24/7 ourselves (not necessarily out of choice but because he was felt to be too difficult to cope with by the places we got referred to.) Before that all we really got was a few days a year respite from the local childrens hospice. So we went into partnership with a couple of charitable provider organisations and started the 'shared care' with one or two days a week. They were good and we gradually built it up until this year he's only with us one or two days a week. It's been long, hard and involved a fair bit of friction at times (especially with the PCT and Social Services) now we trust them and I think they trust us.

The real payoff here is that we can risk dying now. Getting ill hadn't really been an option before. And I don't want my daughter to feel she has to take over if anything happens to us - the damage it's done already is more than enough. (S - if you read this, we know you could do it, we just don't want you to have to. Your life is just as important as his.)

We've recently made the transition to not doing the nights shifts - even when he's at home, one of the nursing team now take on his night care and we camp out in the spare bedroom. This has actually made much more of a difference than we expected and changed things in what for us was a fairly surprising way.

Up to recently we had him at home with us for a continuous row of shifts for about two days and nights at a time (plus of course any 'contingency'). What this meant was that, even alternating the waking watch night, we were so tired that we didn't have the energy to do much with him during the day apart from his care, and we spent all the time in between just catching up on sleep until his next visit.

Now, we're awake and alert when he's with us and spending the time in between not just recovering - and everybody's quality of life is better. We have the energy to organise and do things with him we never considered before, so his time at home is much more interesting. We've found ourselves taking him out with the nurses in between times as well to do fun things - and it's good.

We're even managing to take a few days out to visit my daughter. I'm finding it difficult to remember what it felt like even a few years ago when we were locked into full time continuous care and staying awake was an effort. The light at the end of the tunnel looks good - I just hope the spending cuts don't turn it into another oncoming train.