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.
Monday, May 30, 2011
Wednesday, May 25, 2011
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.
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.
Tuesday, May 24, 2011
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.
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.
Tuesday, May 17, 2011
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.
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.
Wednesday, May 11, 2011
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.
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.
Tuesday, May 10, 2011
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.
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.
Tuesday, May 3, 2011
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.
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.
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.
Saturday, April 30, 2011
Out of the frying pan - into the warming oven
Last week or two has been a definite improvement on previous few months. Sons chest infection seems to have cleared, and even better, we've had his sister visiting for a week or so over Easter.
We still have problems with his breathing etc. - they're a bit different now we're getting into the hay fever season - but he's not continuously in distress. One we hadn't seen before looked suspiciously like a 'panic attack' - hyperventilating and very high pulse rate. We used all the treatments for asthma, including oxygen, panadol etc., even 'paper bagged' him briefly but what seemed to work was slowly talking him down. Difficult to pin down though - it could have been the treatments kicking in. Not being able to tell you what's going on is a real problem and educated guesswork is all you've got to go on.
He's had his 3 monthly botox to ease his hand and wrist contractions - really works. His nails used to cut into his palms and cleaning them properly was all but impossible. These days they're much more relaxed and we can get rid of the 'cheesy' smell. (This is what comfort and dignity is really about.)
Meanwhile in the background, the cuts rumble on. Three meeting last week and not looking forward to the upcoming one with the PCT over reviewing his care package. We're going to have to take on responsibility for employing nurses etc. for part of his care as no one else will under the new CQC registrations - getting that funded while stopping them reducing his care package should be 'interesting'.
In the end, however well meaning the care provider, it comes down to relatives and carers to fight his corner. I really worry for the ones who don't have family or aren't articulate and stroppy enough to make providers/funders do what's needed. I know some of them. We do what we can to help but we simply don't have the energy to fight everyone's battles. I think he'll be all right if he outlives us - his sister can be just as determined as we are, but I don't want him taking over her life as well. They both have a right to an independent life.
So, maybe this time of panic over his health is easing and it's back to the war of attrition. It's not a war we look like winning - not being forced back too far is as good as the vision gets just now.
We still have problems with his breathing etc. - they're a bit different now we're getting into the hay fever season - but he's not continuously in distress. One we hadn't seen before looked suspiciously like a 'panic attack' - hyperventilating and very high pulse rate. We used all the treatments for asthma, including oxygen, panadol etc., even 'paper bagged' him briefly but what seemed to work was slowly talking him down. Difficult to pin down though - it could have been the treatments kicking in. Not being able to tell you what's going on is a real problem and educated guesswork is all you've got to go on.
He's had his 3 monthly botox to ease his hand and wrist contractions - really works. His nails used to cut into his palms and cleaning them properly was all but impossible. These days they're much more relaxed and we can get rid of the 'cheesy' smell. (This is what comfort and dignity is really about.)
Meanwhile in the background, the cuts rumble on. Three meeting last week and not looking forward to the upcoming one with the PCT over reviewing his care package. We're going to have to take on responsibility for employing nurses etc. for part of his care as no one else will under the new CQC registrations - getting that funded while stopping them reducing his care package should be 'interesting'.
In the end, however well meaning the care provider, it comes down to relatives and carers to fight his corner. I really worry for the ones who don't have family or aren't articulate and stroppy enough to make providers/funders do what's needed. I know some of them. We do what we can to help but we simply don't have the energy to fight everyone's battles. I think he'll be all right if he outlives us - his sister can be just as determined as we are, but I don't want him taking over her life as well. They both have a right to an independent life.
So, maybe this time of panic over his health is easing and it's back to the war of attrition. It's not a war we look like winning - not being forced back too far is as good as the vision gets just now.
Thursday, April 21, 2011
Credit where it's due
I've been pleasantly surprised this week by some unexpected progress on our sons multiple broken chairs.
A man in a van, from wheelchair services arrived unannounced to fix his wheelchair footrest - it's been replaced with a second hand one from a wheelchair no longer needed. It isn't perfect but it's a lot better than it was, and it will get him through to the proper replacement being re-assessed etc.
Thank you.
Another man in a different van, also rang us up to see if we were around so that he could alter his postural support/drainage chair - for this we dropped everything and made ourselves available. He did the alterations his previous boss had assured us were impossible in about an hour. There may now be another problem with the chair due to the alteration, but it works and he's comfortable in it.
Thank you.
His toilet chair simply needs a replacement part for the broken bit.
It is still broken.
Two out of three isn't too bad.
A man in a van, from wheelchair services arrived unannounced to fix his wheelchair footrest - it's been replaced with a second hand one from a wheelchair no longer needed. It isn't perfect but it's a lot better than it was, and it will get him through to the proper replacement being re-assessed etc.
Thank you.
Another man in a different van, also rang us up to see if we were around so that he could alter his postural support/drainage chair - for this we dropped everything and made ourselves available. He did the alterations his previous boss had assured us were impossible in about an hour. There may now be another problem with the chair due to the alteration, but it works and he's comfortable in it.
Thank you.
His toilet chair simply needs a replacement part for the broken bit.
It is still broken.
Two out of three isn't too bad.
Friday, April 15, 2011
The problem with chairs
I'd never have thought sitting down could be such a problem. But it is. Our son has a number of chairs - a wheelchair for sitting in and moving around in, a postural seat that doubles as a 'comfy' chair and a 'standing frame' for chest drainage and a toilet seat - you can work that one out yourself. And all three are either problematic or broken at the moment.
His wheelchair footrest (non standard chair) has obviously been driven into something hard and got badly twisted. We've had maintenance out twice, who hit it with various sizes of hammer but it's still too bent to support his feet properly. So we now have to get the manufacturers out to 'assess it' - but not until after the next wheelchair clinic (not sure when that is yet), after which there will be a delay while someone finds a budget to get it mended out of, and eventually it will get fixed. It's been damaged for about a month so far and looks like another month or two before it gets mended. This is normal.
His postural chair has never been quite right as it's too tall for his chest drainage position. It's taken about a year and various 'bodges' and 'adjustments but the manufacturer has just agreed it can be altered without invalidating it's 'integrity'. The engineer has therefore cut 4 inches off the frame and it now works. I wanted to do exactly this myself, at no cost to anyone a year ago, but that isn't allowed. This also is normal.
His toilet chair was a more entertaining problem. The bracket holding the 'pot' had broken. It still worked if you put the pot on the floor, carefully positioned for a 'long drop'. The menders turned up last week and fitted a velcro strap to footrest - no idea why, bracket is still broken. Bemused and cross phone call later and they should be coming back to do the right mend some time soon - we hope. Normal service has been resumed.
All I want is for my son to be able to sit down normally in something that isn't broken.
One day I'll tell you the saga of the gastrostomy feed system.
His wheelchair footrest (non standard chair) has obviously been driven into something hard and got badly twisted. We've had maintenance out twice, who hit it with various sizes of hammer but it's still too bent to support his feet properly. So we now have to get the manufacturers out to 'assess it' - but not until after the next wheelchair clinic (not sure when that is yet), after which there will be a delay while someone finds a budget to get it mended out of, and eventually it will get fixed. It's been damaged for about a month so far and looks like another month or two before it gets mended. This is normal.
His postural chair has never been quite right as it's too tall for his chest drainage position. It's taken about a year and various 'bodges' and 'adjustments but the manufacturer has just agreed it can be altered without invalidating it's 'integrity'. The engineer has therefore cut 4 inches off the frame and it now works. I wanted to do exactly this myself, at no cost to anyone a year ago, but that isn't allowed. This also is normal.
His toilet chair was a more entertaining problem. The bracket holding the 'pot' had broken. It still worked if you put the pot on the floor, carefully positioned for a 'long drop'. The menders turned up last week and fitted a velcro strap to footrest - no idea why, bracket is still broken. Bemused and cross phone call later and they should be coming back to do the right mend some time soon - we hope. Normal service has been resumed.
All I want is for my son to be able to sit down normally in something that isn't broken.
One day I'll tell you the saga of the gastrostomy feed system.
Wednesday, April 13, 2011
Saving energy
Chest infections clearing - hopefully, after some problems. Residual bits causing discomfort but not too much distress. Priorities now are to make sure his chest stays clear, he's kept as comfortable as we can and he gradually gets back to 'normal' (whatever that is.) doing things.
Last few weeks have been a fairly continuous round of physio, antibiotics and worry. Some of the time he's been with us - so we got to worry at first hand, but doing his care at least kept us occupied and feeling we were doing something positive. The hardest parts were when he weasn't here with us. Someone else was doing the care. We stayed with him as much as possible but had to come home at some points to eat and sleep. Being on the end of a telephone isn't the same and we ended up calling and texting for updates at what must have seemed to his nurses, unnecessarily frequent intervals. It isn't that we don't trust them, it's just that he's our son, and when you can't sleep at three in the morning, a bit of reassurance is more effective than any amount of temazipam.
Back in the looking glass world of service cuts, our council has just withdrawn funding from all the local CVS projects to save money, so all the carers initiatives (support for young carers, elderly carers, carers networks, learning disability advocacy, communication help for non verbal people, volunteers etc.) will stop in June as CVS is forced to close down. I thought carers and things like CVS were The Big Society -apparently not. The effects havn't hit us yet - we'll cope with the fall out when it does.
Right now I'm just tired but hopeful that his health picks up. Campigning will have to wait until normal (or abnormally high) energy levels are restored.
Last few weeks have been a fairly continuous round of physio, antibiotics and worry. Some of the time he's been with us - so we got to worry at first hand, but doing his care at least kept us occupied and feeling we were doing something positive. The hardest parts were when he weasn't here with us. Someone else was doing the care. We stayed with him as much as possible but had to come home at some points to eat and sleep. Being on the end of a telephone isn't the same and we ended up calling and texting for updates at what must have seemed to his nurses, unnecessarily frequent intervals. It isn't that we don't trust them, it's just that he's our son, and when you can't sleep at three in the morning, a bit of reassurance is more effective than any amount of temazipam.
Back in the looking glass world of service cuts, our council has just withdrawn funding from all the local CVS projects to save money, so all the carers initiatives (support for young carers, elderly carers, carers networks, learning disability advocacy, communication help for non verbal people, volunteers etc.) will stop in June as CVS is forced to close down. I thought carers and things like CVS were The Big Society -apparently not. The effects havn't hit us yet - we'll cope with the fall out when it does.
Right now I'm just tired but hopeful that his health picks up. Campigning will have to wait until normal (or abnormally high) energy levels are restored.
Tuesday, April 5, 2011
Care - both sides of the looking glass
Things are a bit better. Heavier antibiotics gradually clearing chest, beginnings of side effects. Thrush (manillia - fungal infection) is fairly inevitable in a number of locations on this level of treatment, treating topically at present but will move to systemic treatment once antibiotic course over. Bowels disrupted - started loose, how getting constipated (again this is usual - but needs dealing with as discomfort can cause more fits). Antibiotics interacting with anti epileptics anticipated any day now - more fits. This is the usual aftermath of a severe chest infection. Bigger issue just now is his exhaustion and deep (almost comatose) sleeping which brings very shallow breathing, sleep apnoeia and sudden drops in O2 saturations as movement of infection/secretions gets moved about. Life gets complicated sometimes.
Re-reading this, it doesn't sound very good, but it's what you come to live with. Hopefully he'll be better in a week or two and back to what passes for normal in our world.
Meanwhile, I tore myself away for a few hours to attend a carers meeting. Where we were told -
At least helping with his care is doing something positive.
Re-reading this, it doesn't sound very good, but it's what you come to live with. Hopefully he'll be better in a week or two and back to what passes for normal in our world.
Meanwhile, I tore myself away for a few hours to attend a carers meeting. Where we were told -
- the service cuts are inevitable as the council has no money - by our cabinet councillor
- the health service is in disarray locally and no one is sure who's responsible for what - by the PCT
- all's well with care regulation, except they aren't concerned their changes have lost us a service, they don't regulate day care at all and they'd like to inspect all care providers but they don't have the staff - by CQC (Care Quality Commission)
At least helping with his care is doing something positive.
Wednesday, March 30, 2011
Home alone - waiting
I got it wrong again. Our son wasn't over the worst. As has happened previously, one problem has sparked off another and his physio feels his normal sub optimal chest now has a pneumonia - badly enough for the GP to put him on the more 'heavy duty' antibiotics and suggest moving him back home might not be such a good idea.
He's getting good care, particularly from his physio, but we'd been looking forward to his regular days back with us this afternoon - that's not going to happen until he's rather better than he is now. Not that the nurses aren't good and caring, or that the care situation isn't going out of it's way to help, but when he's this ill, we want to be with him - and camping out over there is inevitably intrusive for them and disruptive for us - and we enjoyed having him at home to ourselves some of the time (and more importantly, he enjoyed it as well.)
Anyway, he's the one who's ill, so his health comes substantially higher up the priorities than our convenience, so we're spending lots of time over there with him. My wife's been there most of the day and I've just got back home to pull together a few needed bits, hang out the washing and be less of a clutter while they toilet and bathe him. I'm now 'home alone' again waiting to hear how he is, whether he's well enough for my wife to leave him for the night (or part of it) and generally rattling around the house doing mindless, unnecessary chores to keep myself occupied.
There needs to be a word for this sort of edgy, restless waiting state but I don't know what it is - it used to be the norm when he went into hospital as no matter how ill he was, only one of us was allowed to stay overnight on the ward. I don't envy my wife the stress of being there helping with his care, but although it's easier, I can't say I enjoy being this far away when he's this ill.
The one bit of silver cloud lining in all this is that as we couldn't cook, we treated ourselves to fish and chips for tea. Even enjoying that was a bit of a guilty pleasure.
I have to admit, I'm writing this post mainly for myself - but you're more than welcome to eavesdrop.
He's getting good care, particularly from his physio, but we'd been looking forward to his regular days back with us this afternoon - that's not going to happen until he's rather better than he is now. Not that the nurses aren't good and caring, or that the care situation isn't going out of it's way to help, but when he's this ill, we want to be with him - and camping out over there is inevitably intrusive for them and disruptive for us - and we enjoyed having him at home to ourselves some of the time (and more importantly, he enjoyed it as well.)
Anyway, he's the one who's ill, so his health comes substantially higher up the priorities than our convenience, so we're spending lots of time over there with him. My wife's been there most of the day and I've just got back home to pull together a few needed bits, hang out the washing and be less of a clutter while they toilet and bathe him. I'm now 'home alone' again waiting to hear how he is, whether he's well enough for my wife to leave him for the night (or part of it) and generally rattling around the house doing mindless, unnecessary chores to keep myself occupied.
There needs to be a word for this sort of edgy, restless waiting state but I don't know what it is - it used to be the norm when he went into hospital as no matter how ill he was, only one of us was allowed to stay overnight on the ward. I don't envy my wife the stress of being there helping with his care, but although it's easier, I can't say I enjoy being this far away when he's this ill.
The one bit of silver cloud lining in all this is that as we couldn't cook, we treated ourselves to fish and chips for tea. Even enjoying that was a bit of a guilty pleasure.
I have to admit, I'm writing this post mainly for myself - but you're more than welcome to eavesdrop.
Friday, March 25, 2011
Race of life
Sometimes life catches up with you. Sometimes it overtakes you and disappears off into the distance without you. It's a bit like this here at the moment.
Our son has been ill - difficult to tell what with, probably a tummy virus, but as he can't speak or communicate that well we can't really be sure. He's over the worst (I think) but it's left him pretty washed out and he's sleeping much of the time - not always that comfortably. At the same time we've had one care 'incident' we've had to complain about (complaining is hard, especially when it involves people you know well and you know you've got to work with afterwards) and our CQC initiated 'care deficit' has now escalated into a major problem with one care provider unable/unwilling to provide care in certain settings. (As this will limit what he can do we're going to have to set up an alternative - while picking up the extra care load ourselves. This involves waking watch overnights, so last week we did x3 back to back shifts on the run - no paid carer would be allowed to, but we're not paid, so that's OK.) My own parents are in poor health with dad just coming out of hospital and mum going in and on top of all this, I have to organize felling a large tree in their garden that's causing a neighbour dispute.
I've just re-read this - it's too long and whingeing. Actually, it isn't meant to be - it's just how things are for carers. Caring on it's own can be hard and stressful in it's own right, but non carers often forget that it's on top of the issues everyone else has anyway. Life goes on whatever you do, and impacts on you even if you ignore it.
Oh, by the way, his care review still isn't sorted by Social Services/NHS, the cuts are starting to hit and I'm supposed to be fighting them, and I've promised to give a talk next week to a group of about 50 people (on a completely non care, non disability topic I have a research interest in.)
I do have a life outside care and disability but sometimes I wish I didn't.
Our son has been ill - difficult to tell what with, probably a tummy virus, but as he can't speak or communicate that well we can't really be sure. He's over the worst (I think) but it's left him pretty washed out and he's sleeping much of the time - not always that comfortably. At the same time we've had one care 'incident' we've had to complain about (complaining is hard, especially when it involves people you know well and you know you've got to work with afterwards) and our CQC initiated 'care deficit' has now escalated into a major problem with one care provider unable/unwilling to provide care in certain settings. (As this will limit what he can do we're going to have to set up an alternative - while picking up the extra care load ourselves. This involves waking watch overnights, so last week we did x3 back to back shifts on the run - no paid carer would be allowed to, but we're not paid, so that's OK.) My own parents are in poor health with dad just coming out of hospital and mum going in and on top of all this, I have to organize felling a large tree in their garden that's causing a neighbour dispute.
I've just re-read this - it's too long and whingeing. Actually, it isn't meant to be - it's just how things are for carers. Caring on it's own can be hard and stressful in it's own right, but non carers often forget that it's on top of the issues everyone else has anyway. Life goes on whatever you do, and impacts on you even if you ignore it.
Oh, by the way, his care review still isn't sorted by Social Services/NHS, the cuts are starting to hit and I'm supposed to be fighting them, and I've promised to give a talk next week to a group of about 50 people (on a completely non care, non disability topic I have a research interest in.)
I do have a life outside care and disability but sometimes I wish I didn't.
Friday, March 18, 2011
A big thank you
My thanks have to go to Disability Equality North West and the two legal firms who are helping them. They've taken out a legal action against Lancashire County Council over the so called 'consultation' exercise they carried out around their announcement of £179m cuts - heavily affecting people with disabilities, involving much front line care cutting and intended to take place very quickly. (They've been very quiet about how many jobs will be lost, but some estimates say 6,000, many from front line and care).
LCC took it's decisions about what to cut before it embarked on it's joke of a consultation exercise, and passed the cuts in full council, unchanged, even before the 'consultation' was finished. No impact assessment was carried out and there has been practically no attempt to respond to local peoples fears about how these cuts will affect them, with local Conservative councilors apparently unable to respond to their electorate without passing the queries up to LCC cabinet.
These cuts are deep and being implemented with an unseemly haste. They are heavily front line weighted and include closure of respite units for severely disabled children, taking services away from many people who get them at present, imposing heavy charges for what little services remain and massive reductions to the money given to care providers to look after elderly and disabled people.
When LCC say there is no money I get very angry. They have between £50m and £150m in reserves 'for a rainy day' - it's absolutely pissing down now. They are still intending to build new roads - tarmac is obviously more important than people. They are right now in process of letting a tender worth between £20m and £40m for superfast broadband - I've nothing against the internet, but I think providing care is a higher priority right now than allowing people to access this blog a few milliseconds earlier than at present.
Thank you Disability Rights North West. As carers we're trying to fight these cuts but we wouldn't have known how to object to this or had the time to do it even if we'd known it was possible. There are people out there who can see an injustice and are willing to do something about it - thank you.
LCC took it's decisions about what to cut before it embarked on it's joke of a consultation exercise, and passed the cuts in full council, unchanged, even before the 'consultation' was finished. No impact assessment was carried out and there has been practically no attempt to respond to local peoples fears about how these cuts will affect them, with local Conservative councilors apparently unable to respond to their electorate without passing the queries up to LCC cabinet.
These cuts are deep and being implemented with an unseemly haste. They are heavily front line weighted and include closure of respite units for severely disabled children, taking services away from many people who get them at present, imposing heavy charges for what little services remain and massive reductions to the money given to care providers to look after elderly and disabled people.
When LCC say there is no money I get very angry. They have between £50m and £150m in reserves 'for a rainy day' - it's absolutely pissing down now. They are still intending to build new roads - tarmac is obviously more important than people. They are right now in process of letting a tender worth between £20m and £40m for superfast broadband - I've nothing against the internet, but I think providing care is a higher priority right now than allowing people to access this blog a few milliseconds earlier than at present.
Thank you Disability Rights North West. As carers we're trying to fight these cuts but we wouldn't have known how to object to this or had the time to do it even if we'd known it was possible. There are people out there who can see an injustice and are willing to do something about it - thank you.
Thursday, March 17, 2011
Illness can make you stressed
Not a particularly good week. Our son seems to have picked up a viral stomach bug. Doesn't sound much but with his condition, this sort of thing can be a major problem. (We know it's viral because he's already on a course of antibiotics for his last chest infection). Started one evening with him being 'a bit off' - this involved him having extra fits and quite severe asthmatic symptoms with copious production of fluids (he uses both epilepsy and asthma for communication and they both get worse anyway when he's stressed and/or uncomfortable). Keeping his airways clear therefore became even more of a problem than usual.
By following day the actual cause of the problem became apparent - high temperature and even a small vomit (this is extremely unusual as he's had operations to limit his 'food pipe' so that he's less likely to breathe in stomach contents). Even though he can't speak, he obviously felt lousy, so panadol etc. became order of the day. By mid morning he was completely exhausted and went into a deep, unrousable sleep. We've had a day or two of this now and he's gradually picking up but his condition makes him very vulnerable to what for us would just be an odd day off work.
We know these sort of things can be life threatening for him if we and the nurses don't keep on top of things, but we've lived with it so long, you'd think we'd be used to it by now. In a way we are - we've learned to just get on with things around him - but we still get wound up about it. We operate normally at a fairly high level of stress - it's another notch up just now.
By following day the actual cause of the problem became apparent - high temperature and even a small vomit (this is extremely unusual as he's had operations to limit his 'food pipe' so that he's less likely to breathe in stomach contents). Even though he can't speak, he obviously felt lousy, so panadol etc. became order of the day. By mid morning he was completely exhausted and went into a deep, unrousable sleep. We've had a day or two of this now and he's gradually picking up but his condition makes him very vulnerable to what for us would just be an odd day off work.
We know these sort of things can be life threatening for him if we and the nurses don't keep on top of things, but we've lived with it so long, you'd think we'd be used to it by now. In a way we are - we've learned to just get on with things around him - but we still get wound up about it. We operate normally at a fairly high level of stress - it's another notch up just now.
Friday, March 11, 2011
Spanners in the works
I saw an article on the TV this morning about the difficulties and delays getting wheelchairs for disabled children - to the extent that they grew out of them before they arrived. And the empathy flowed. Our experience was almost identical when our son was younger - it should have got better by now, but apparently not.
I know we still have major battles with wheelchair services about every couple of years - he uses a supported seating system in a chassis that needs alteration as his back shape alters - otherwise it damages rather than helps. But the problem is wider than just wheelchairs. Readers who have been here for a while will be aware of the issues we've had with with other equipment - feed pumps that break down and never get serviced, hoists and slings that are made incorrectly, gastrostomy (feeding direct into stomach) tubes that don't get replaced after they've come apart in your hands, oxygen equipment incorrectly set up, orthopaedic footwear that takes 2 years to arrive and needs remaking at least 3 times, etc. etc. (see archives of this blog for details). People outside our enclosed little world tend to be horrified by things like this and assume they're one off failings. Unfortunately disability/medical equipment is in my experience, generally poorly designed, made from substandard materiels and inadequately serviced and administered. Like most of health and social services, it's subject to cost cutting and restrictions.
Failures of medical equipment are supposed to be reported via the 'yellow card' system and we use it almost every time. Unfortunately much of this equipment is used in hospital settings and if something fails there, the nurses simply throw it away and replace it - out in the community, we don't have that luxury, or a stock cupboard to call on. The result is that most users (in hospitals) don't report, so nothing gets done. We've more than once been told off by manufacturers for reporting breakdowns - 'no one else seems to complain'.
The current government response to the wheelchair issue seems to be not to insist things get better, but to suggest disabled people buy their own through some sort of 'direct payments' system. This won't work for two reasons - the equipment isn't standard, by the nature of disability it's personalised and often technical (how does someone with a cerebral palsy and a learning disability choose the right wheelchair and feeding system?), and experience of 'personalisation' so far is that it quickly becomes standardized - one size here, literally doesn't fit all.
I could rant all day on this but I guess you've got the gist. We understand more than most about this equipment, having had 28 years experience - god help families with a newly disabled child/adult, because there's no one else to advise you. (Please don't respond that you can ask an Occupational Therapist - their experience is limited, often to standard equipment, and how do you get access to one? - or even know that's who you need in the first place. I don't want to offend OT's, some are brilliant - some aren't and access to them is at best difficult.)
I know we still have major battles with wheelchair services about every couple of years - he uses a supported seating system in a chassis that needs alteration as his back shape alters - otherwise it damages rather than helps. But the problem is wider than just wheelchairs. Readers who have been here for a while will be aware of the issues we've had with with other equipment - feed pumps that break down and never get serviced, hoists and slings that are made incorrectly, gastrostomy (feeding direct into stomach) tubes that don't get replaced after they've come apart in your hands, oxygen equipment incorrectly set up, orthopaedic footwear that takes 2 years to arrive and needs remaking at least 3 times, etc. etc. (see archives of this blog for details). People outside our enclosed little world tend to be horrified by things like this and assume they're one off failings. Unfortunately disability/medical equipment is in my experience, generally poorly designed, made from substandard materiels and inadequately serviced and administered. Like most of health and social services, it's subject to cost cutting and restrictions.
Failures of medical equipment are supposed to be reported via the 'yellow card' system and we use it almost every time. Unfortunately much of this equipment is used in hospital settings and if something fails there, the nurses simply throw it away and replace it - out in the community, we don't have that luxury, or a stock cupboard to call on. The result is that most users (in hospitals) don't report, so nothing gets done. We've more than once been told off by manufacturers for reporting breakdowns - 'no one else seems to complain'.
The current government response to the wheelchair issue seems to be not to insist things get better, but to suggest disabled people buy their own through some sort of 'direct payments' system. This won't work for two reasons - the equipment isn't standard, by the nature of disability it's personalised and often technical (how does someone with a cerebral palsy and a learning disability choose the right wheelchair and feeding system?), and experience of 'personalisation' so far is that it quickly becomes standardized - one size here, literally doesn't fit all.
I could rant all day on this but I guess you've got the gist. We understand more than most about this equipment, having had 28 years experience - god help families with a newly disabled child/adult, because there's no one else to advise you. (Please don't respond that you can ask an Occupational Therapist - their experience is limited, often to standard equipment, and how do you get access to one? - or even know that's who you need in the first place. I don't want to offend OT's, some are brilliant - some aren't and access to them is at best difficult.)
Wednesday, March 9, 2011
Relationships
Back in the real world, we've been walking on eggshells for the past few months. Our shared care relationship with one of our sons care providers has been less than comfortable. Partly some personality clashes and partly changes in the care framework. CQC somewhat to blame for their 'tick box culture' of what nurses can and can't do under different forms of registration as well as the normal drift towards having to document and protocol everything that moves and araldite everything to the floor that doesn't, just in case it decides to move.
Anyway, I think we're moving back from a suspended hostilities relationship via mutual co-existence with a target of reinstated trust. Half of care is actually about care, the other half is about trust - and if anything damages the trust (internally or externally caused) the care itself is in real danger. We've had a lot of sleepless nights working out how we could avoid this impacting on our sons actual care and it's caused a fairly massive amount of stress - hopefully things are getting better. We're (both sides) starting to trade apologies for the smallest things not perfectly in line and going out of our way to do little things that show willing over the small daily crises that are normal life. I think it's going to work - it has to as there isn't really an alternative.
All this has been going on while we've been distracted by the service cuts and his care review - both still ongoing and likely to get worse. His equipment still breaks down with disturbing regularity - feed pump failed over the weekend and no replacement arrived, tyre came off wheelchair and damaged wheel so new front wheel needed, postural drainage 'chair' has given problems and issue with oxygen prescription being 'cocked up' still isn't finalized.
But all this is about things, and things can be mended - mending relationships is infinitely harder and far more critical.
Anyway, I think we're moving back from a suspended hostilities relationship via mutual co-existence with a target of reinstated trust. Half of care is actually about care, the other half is about trust - and if anything damages the trust (internally or externally caused) the care itself is in real danger. We've had a lot of sleepless nights working out how we could avoid this impacting on our sons actual care and it's caused a fairly massive amount of stress - hopefully things are getting better. We're (both sides) starting to trade apologies for the smallest things not perfectly in line and going out of our way to do little things that show willing over the small daily crises that are normal life. I think it's going to work - it has to as there isn't really an alternative.
All this has been going on while we've been distracted by the service cuts and his care review - both still ongoing and likely to get worse. His equipment still breaks down with disturbing regularity - feed pump failed over the weekend and no replacement arrived, tyre came off wheelchair and damaged wheel so new front wheel needed, postural drainage 'chair' has given problems and issue with oxygen prescription being 'cocked up' still isn't finalized.
But all this is about things, and things can be mended - mending relationships is infinitely harder and far more critical.
Tuesday, March 8, 2011
Split personality
I'm not quite sure which way I should face at the moment. Originally, the whole point of this blog was to try to give some sort of human voice to what carers have to do on a daily basis. This isn't really that popular - apart maybe for carers themselves and people involved. But I didn't do this to be popular.
Recently I've had to get involved in politics, because my son's care, and that of his friends is threatened by the scale and depth of the recent cuts. This has proved amazingly (to me) popular. Visitors to the blog have increased astronomically and I'm very grateful for the support and sympathetic comment. However, I don't want this to become a political blog.
My gut reaction is to continue with what political action I feel appropriate in the real world, but to take Ned Ludd, carer back to what he started doing this for - trying to flag up the real life issues and problems we carers and the people we look after have on a day to day basis, just keeping things human. I'm afraid some of the more politically involved people may see less that interests them here in the future. It isn't that I've stopped taking action where I feel it matters, it's just that I'm not sure this is the right place to publicize it. If this means a large number of people drift away, sorry - I thank you for your support but pushing a political view isn't why I'm here. I know I'll probably return to being a blog of minority interest, but I can live with that.
I will probably still comment occasionally about specific political situations - they are impacting on our life and it would be dishonest not to acknowledge that - but it won't be a main plank of this blog.
I will also try to avoid any more of this self indulgent navel gazing in future - after all, it is only a blog and these are only words - the real world is a bit more important and needs me more.
Recently I've had to get involved in politics, because my son's care, and that of his friends is threatened by the scale and depth of the recent cuts. This has proved amazingly (to me) popular. Visitors to the blog have increased astronomically and I'm very grateful for the support and sympathetic comment. However, I don't want this to become a political blog.
My gut reaction is to continue with what political action I feel appropriate in the real world, but to take Ned Ludd, carer back to what he started doing this for - trying to flag up the real life issues and problems we carers and the people we look after have on a day to day basis, just keeping things human. I'm afraid some of the more politically involved people may see less that interests them here in the future. It isn't that I've stopped taking action where I feel it matters, it's just that I'm not sure this is the right place to publicize it. If this means a large number of people drift away, sorry - I thank you for your support but pushing a political view isn't why I'm here. I know I'll probably return to being a blog of minority interest, but I can live with that.
I will probably still comment occasionally about specific political situations - they are impacting on our life and it would be dishonest not to acknowledge that - but it won't be a main plank of this blog.
I will also try to avoid any more of this self indulgent navel gazing in future - after all, it is only a blog and these are only words - the real world is a bit more important and needs me more.
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