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.
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