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.
Wednesday, March 30, 2011
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.
Saturday, February 26, 2011
Staying alive
As a parent, did you ever suddenly find out your child wasn't where you expected them to be - and you didn't know what had happened? Panic. Cold feeling in pit of stomach. If that 'child' has learning disabilities (as well as medical problems) this doesn't stop once they're old enough to go to the pub on their own.
Rang up one morning last week to make arrangements for later that week - he hadn't arrived at day care, over an hour late but had left his home. Panic. Cold sweat - he needs a nurse with him - where was he? where were they? Had there been an accident, what had happened, should we run for the car, where the hell was he?
Needless to say, all was in fact well. He had had an accident - involving his urine continence, necessitating a complete change of clothes etc.. Coupled with altered transport due to half term chaos. The nurses had in fact coped and communicated and all was well. If we hadn't rung we'd never have seen a problem.
But you do when it's your son. It's not rational, it's emotional. But it's real when you have an adult with these sort of problems. And it goes on all their life. Children grow up, and I know my 30 year old daughter will always be a little girl needing my protection in my eyes (not that she needs it really, sorry S.) but my son will. He'll never be fully grown up enough to leave on his own in case he chokes or has a bad fit, so I'll always be a worried parent.
Another parent with a far less disabled son than mine was once asked what was the best thing he could do to ensure his son got the best care possible. I thought his answer was incredibly wise - 'Stay alive as long as I can.'
This time things didn't go wrong - next time they might (shit happens - no-one's to blame). I trust his carers and nurses, but he's my son - trust can go a long way, but it will never go as far as I will. I don't apologize for this, or blame anyone - it's just part of being a parent.
Rang up one morning last week to make arrangements for later that week - he hadn't arrived at day care, over an hour late but had left his home. Panic. Cold sweat - he needs a nurse with him - where was he? where were they? Had there been an accident, what had happened, should we run for the car, where the hell was he?
Needless to say, all was in fact well. He had had an accident - involving his urine continence, necessitating a complete change of clothes etc.. Coupled with altered transport due to half term chaos. The nurses had in fact coped and communicated and all was well. If we hadn't rung we'd never have seen a problem.
But you do when it's your son. It's not rational, it's emotional. But it's real when you have an adult with these sort of problems. And it goes on all their life. Children grow up, and I know my 30 year old daughter will always be a little girl needing my protection in my eyes (not that she needs it really, sorry S.) but my son will. He'll never be fully grown up enough to leave on his own in case he chokes or has a bad fit, so I'll always be a worried parent.
Another parent with a far less disabled son than mine was once asked what was the best thing he could do to ensure his son got the best care possible. I thought his answer was incredibly wise - 'Stay alive as long as I can.'
This time things didn't go wrong - next time they might (shit happens - no-one's to blame). I trust his carers and nurses, but he's my son - trust can go a long way, but it will never go as far as I will. I don't apologize for this, or blame anyone - it's just part of being a parent.
Friday, February 18, 2011
A different kind of review
There are reviews - and reviews. The one we had today was the internal one we have regularly with the two charities who share care with us. Needless to say Social Services were invited as usual - but as usual, didn't turn up. This is the review where we talk about the real care issues - how we're going to manage his chest over the next year, what we're going to change with his nursing, how the current continence equipment is or isn't working etc.. If this isn't Social Work I'm not sure what is.
They're happy enough to set up their own review to see if they can cut anything and insist we jump through their hoops and tick their boxes for it, but attending the regular ones that cover the real work doesn't seem important to them. Mind you, our reviews aren't about money (unless it's the iniquity of how much it costs him to go to the pictures because the cinema insists he pays for his nurse and driver - he can hardly leave one in the car for the length of a film.). The only interest Social Services seem to have in his care these days is how much it costs and whether they can reduce it to save a bit more - now that's what they call a review, and we've got one of those going on in parallel.
They don't know him, they don't really care about him, they're not involved - as long as they can tick the boxes and knock a few pounds off - job done. (That's probably a bit unfair to the individual doing it - but it's not unfair to the system she's feeding.)
P.S. NHS did attend for once. They sent one of the few people who's actually fought our corner in the past. She'll do it again for us this time - unfortunately the cuts mean she's having to take early retirement next month.
They're happy enough to set up their own review to see if they can cut anything and insist we jump through their hoops and tick their boxes for it, but attending the regular ones that cover the real work doesn't seem important to them. Mind you, our reviews aren't about money (unless it's the iniquity of how much it costs him to go to the pictures because the cinema insists he pays for his nurse and driver - he can hardly leave one in the car for the length of a film.). The only interest Social Services seem to have in his care these days is how much it costs and whether they can reduce it to save a bit more - now that's what they call a review, and we've got one of those going on in parallel.
They don't know him, they don't really care about him, they're not involved - as long as they can tick the boxes and knock a few pounds off - job done. (That's probably a bit unfair to the individual doing it - but it's not unfair to the system she's feeding.)
P.S. NHS did attend for once. They sent one of the few people who's actually fought our corner in the past. She'll do it again for us this time - unfortunately the cuts mean she's having to take early retirement next month.
Thursday, February 17, 2011
Street theatre, from the gallery
Adrenalin starting to subside - it's been a long day. We went as a disabled family to let the County Council know exactly who they were cutting. But they cut anyway. They made £179m worth of 'savings' over the next three years. Mainly at our expense.
One saving will close disabled childrens' respite centres, another will take money away from charities who provide care to disabled adults, yet more will be saved by taking support away from people with 'moderate' disabilities. People with a learning disability are particularly being hit with their current support service being 'remodeled' (read cut). There are many more. They actually made more 'savings' than the headline figure because they're bringing in cash by increasing charges - less services for vulnerable people who have to pay for the little that's left.
No namby pamby library closures or reductions in cultural services here - go for the jugular - cut basic living services for those they think can't answer back. The elderly, the disabled, carers.
Anyway, we buttonholed a lot of councilors before the meeting - the conservative majority didn't want to talk, unsurprisingly, but at least they now know what a disabled person looks like. Then we trooped up six flights of stairs to the gallery (wheelchairs not admitted of course). There was some shouting from the gallery (one mum took exception to the phrase 'cutting out waste' justifying her sons service cuts - I thought she was quite restrained actually) so the police were called to clear out the public gallery. Shifting disabled families with a real grievance can't be the most fun a policeman gets but it kept the council's 'headmaster' happy.
It made the news so the message got through - it didn't stop the service cuts. So the real work starts here, when each cut gets implemented. It's not even militancy - it's self preservation.
These carers and disabled people didn't fit the quiet, heroic vulnerables, silently suffering nicely out of sight (and mostly out of mind) image the media likes. We can be feisty when we have to - oh, and we have the vote these days as well.
One saving will close disabled childrens' respite centres, another will take money away from charities who provide care to disabled adults, yet more will be saved by taking support away from people with 'moderate' disabilities. People with a learning disability are particularly being hit with their current support service being 'remodeled' (read cut). There are many more. They actually made more 'savings' than the headline figure because they're bringing in cash by increasing charges - less services for vulnerable people who have to pay for the little that's left.
No namby pamby library closures or reductions in cultural services here - go for the jugular - cut basic living services for those they think can't answer back. The elderly, the disabled, carers.
Anyway, we buttonholed a lot of councilors before the meeting - the conservative majority didn't want to talk, unsurprisingly, but at least they now know what a disabled person looks like. Then we trooped up six flights of stairs to the gallery (wheelchairs not admitted of course). There was some shouting from the gallery (one mum took exception to the phrase 'cutting out waste' justifying her sons service cuts - I thought she was quite restrained actually) so the police were called to clear out the public gallery. Shifting disabled families with a real grievance can't be the most fun a policeman gets but it kept the council's 'headmaster' happy.
It made the news so the message got through - it didn't stop the service cuts. So the real work starts here, when each cut gets implemented. It's not even militancy - it's self preservation.
These carers and disabled people didn't fit the quiet, heroic vulnerables, silently suffering nicely out of sight (and mostly out of mind) image the media likes. We can be feisty when we have to - oh, and we have the vote these days as well.
Wednesday, February 16, 2011
Back on the street again
Tomorrow we, as a family, will take to the streets - wheelchair and all (assuming he's well enough) on my first demonstration since I marched against the Vietnam war 40 odd years ago. I don't have the time or energy for this really - being a carer takes it out of you and doesn't leave you much free time. But this is important.
If we don't stand up now and say clearly that these cuts are hurting real people and we won't stand for it, they will see us as easy targets and cut even more. People like my son are vulnerable - they need to be cared for. Reducing his service will reduce the quality of his life. Of course we'll protect him as much as we can, but we don't have limitless funds - and care costs. We can only stay awake so long - and care takes time. One day we won't be here to protect him - someone will have to do it and it's only fair they should get paid for this.
We won't be the only wheels on the street - whether it will make a difference, we'll wait and see. I don't really want to have to do this but I have to.
If we all really are in this together, some of us have barely got wet feet and some of us are in it up to our necks - and it's the weakest who are in the deepest. This is wrong.
- Our council is reducing the money it pays charities to help care for my son.
- It's taking care away from people with only (sic) moderate learning disabilities.
- It's closing respite centres for learning disabled children.
- It's reducing support for people with personalised budgets and domiciliary care by 20%.
- And the elderly and disabled here are being hit with more than their fair share of these cuts.
If we don't stand up now and say clearly that these cuts are hurting real people and we won't stand for it, they will see us as easy targets and cut even more. People like my son are vulnerable - they need to be cared for. Reducing his service will reduce the quality of his life. Of course we'll protect him as much as we can, but we don't have limitless funds - and care costs. We can only stay awake so long - and care takes time. One day we won't be here to protect him - someone will have to do it and it's only fair they should get paid for this.
We won't be the only wheels on the street - whether it will make a difference, we'll wait and see. I don't really want to have to do this but I have to.
If we all really are in this together, some of us have barely got wet feet and some of us are in it up to our necks - and it's the weakest who are in the deepest. This is wrong.
Tuesday, February 15, 2011
Pain diagnosed
We'd been getting reports from the nurses that our son had been 'a bit off colour' at times recently. It's taken a while but I think we've worked out why. He has a boil - in an extremely intimate place full of wrinkles. It makes me shiver just thinking about it. Antibiotics changed to deal with it and panadol to dull it but it flags up again how difficult it can be to spot something that causes him real discomfort. He's probably had it unspotted for a day or two - nobody's fault but it still gives me nagging worries.
Rush of adrenalin when first discovered - a lump there could have been the big C. (No matter what your other disabilities, you're not immune from the things everyone else gets.) Fortunately (in relative terms) it wasn't, but scary none the less.
I can't help worrying there may be other things going on he can't tell us about. He's got a whole set of organs inside we can't see - one of which is an appendix. I've no idea how we'd spot that one until it was too late.
Rush of adrenalin when first discovered - a lump there could have been the big C. (No matter what your other disabilities, you're not immune from the things everyone else gets.) Fortunately (in relative terms) it wasn't, but scary none the less.
I can't help worrying there may be other things going on he can't tell us about. He's got a whole set of organs inside we can't see - one of which is an appendix. I've no idea how we'd spot that one until it was too late.
Monday, February 14, 2011
So much for democracy
I used to think that our democratic system was a bit flawed. I'm beginning to think I was wrong - it's very flawed. When you have an issue with what your council is doing, you're recommended to go to your local councilor.
I have an issue - our local council is cutting services to disabled people (including my son) massively. I've written to - my own councilor, my son's councilor, our designated 'Disability Champion' councilor and the cabinet member responsible for social services. None have replied, other than to tell me that they've referred the comment to the cabinet member.
The only reaction he's made to any of us representatives of people with learning disabilities (to a communication described as 'powerful' by a senior officer of the said council) was to say he'd had no reaction other than a few 'vexatious messages'.
I used to be a reasonable man, but I'm getting less reasonable by the day. Being ignored by elected representatives isn't nice - being insulted for having the temerity to disagree is unacceptable. I belong to no political party - maybe I'll have to to be heard, but bet your life it won't be the one treating us like this.
I have an issue - our local council is cutting services to disabled people (including my son) massively. I've written to - my own councilor, my son's councilor, our designated 'Disability Champion' councilor and the cabinet member responsible for social services. None have replied, other than to tell me that they've referred the comment to the cabinet member.
The only reaction he's made to any of us representatives of people with learning disabilities (to a communication described as 'powerful' by a senior officer of the said council) was to say he'd had no reaction other than a few 'vexatious messages'.
I used to be a reasonable man, but I'm getting less reasonable by the day. Being ignored by elected representatives isn't nice - being insulted for having the temerity to disagree is unacceptable. I belong to no political party - maybe I'll have to to be heard, but bet your life it won't be the one treating us like this.
Sunday, February 13, 2011
A cold drop
Son's health not best at present. Cold and wind sets off his asthma and affects his chest. He's been fairly 'bubbly' last few days and is on a double length antibiotic course for chest, plus more oxygen than usual and low O2 saturations due to secretions etc. 'blocking off' parts of his lungs. It's not unusual for this time of year, and certainly not as bad as last winter, but a real worry all the same. He's going to need to pick up a bit if he's to come to County Hall with us for the budget cuts. Still he had a couple of good relaxed evenings with us earlier in the week and as long as we keep on top of his asthma things should settle again.
He's an amazingly good weather predictor - he usually spots a front coming over at least a day before the weather and winds really hit. Unfortunately the way he spots it is for his breathing to deteriorate - I'd rather it was just the barometer that dropped.
He's an amazingly good weather predictor - he usually spots a front coming over at least a day before the weather and winds really hit. Unfortunately the way he spots it is for his breathing to deteriorate - I'd rather it was just the barometer that dropped.
Wheelchairs on the streets
Our own son's care 'reassessment' continues. Cuts will be to his transport, day care and nursing cover. Haven't gone through yet and we're still fighting to minimize impact on his quality of life but it's clear this is an attempt to cut costs. The only thing holding it up is the lack of staff at the PCT (Primary Care Trust) to carry out his health assessment - the one qualified person who knew him well enough has been made redundant.
Meanwhile our beloved (not!) County Council continues with its cuts. It's already started closing respite facilities for children with severe learning disabilities and approves it's budget for major cuts to Adult and Children's Social Care on Thursday. Went to a local rally generally against the cuts on Saturday - the learning disability contingent was over 20 strong, learning disabled, children and wheelchairs - it takes quite a lot for these people to brave a cold, northern February day for 2 hours, but these cuts are specific. They are damaging their lives and they know that. The council is already closing learning disabled children's respite facilities and withdrawing funding from day projects - the budget includes 20% cuts to personal budgets and domiciliary care, funding cuts to charities that provide the care on the ground, taking care away from those with 'moderate' disabilities and 'remodeling' (i.e. cutting) learning disability supported living.
Currently I'm helping organize our own demonstration when the council passes it's cuts budget this coming week. Apologies for delays blogging but this is too important and takes up a lot of time.
We may not win, but these cuts can't go unchallenged.
Meanwhile our beloved (not!) County Council continues with its cuts. It's already started closing respite facilities for children with severe learning disabilities and approves it's budget for major cuts to Adult and Children's Social Care on Thursday. Went to a local rally generally against the cuts on Saturday - the learning disability contingent was over 20 strong, learning disabled, children and wheelchairs - it takes quite a lot for these people to brave a cold, northern February day for 2 hours, but these cuts are specific. They are damaging their lives and they know that. The council is already closing learning disabled children's respite facilities and withdrawing funding from day projects - the budget includes 20% cuts to personal budgets and domiciliary care, funding cuts to charities that provide the care on the ground, taking care away from those with 'moderate' disabilities and 'remodeling' (i.e. cutting) learning disability supported living.
Currently I'm helping organize our own demonstration when the council passes it's cuts budget this coming week. Apologies for delays blogging but this is too important and takes up a lot of time.
We may not win, but these cuts can't go unchallenged.
Sunday, February 6, 2011
Cuts hurt people - really
Heavy week. Too many meetings with council about cuts (all day meetings - we don't have that sort of time), also care assessment meeting that didn't finish until 6:30 plus looking after him ourselves without nurse. It's hard work looking after him - meds, lifting, suction etc. but it has its rewards when he sits there on the sofa with you chilled out and just resting. There can't be many 28 year olds who'll tolerate an evening cuddle from parents watching tele.
Meetings about cuts or assessments don't have that upside. The stress and anxiety levels just get driven up and seem to hover at an uncomfortable edgy level for days. Sleeping, even without him here, gets to be something you celebrate and only comes when you're so exhausted you fall off doing something. Have to do something to stop the adrenalized thoughts going round and round in circles. Even resorted to low volume, watching channel Dave until dozed off last night.
I'll almost be happier once these cuts hit properly. At least we'll know exactly how hard things are going to be and can get on with living. Fighting them, when you know you'll almost certainly lose is really wearing. It's not like it'll stop when we're beaten, it just means life will be even harder than it is now. These cuts are real - we now know fairly well what's going to disappear - most of his transport, almost certainly some day care, probably some of his 'ancillary' services, and that's with us battling to keep them. The ones I really feel for are those with moderate learning disabilities. Our sons disability is obvious and we'll find ways to make sure his quality of life doesn't suffer, somehow - at someone's expense, if not our own. They are in line for effectively losing all their support, they won't understand what's happening or why and many of them will be left with no-one to fight their corner.
I'm not going to feel guilty that our sons service is stopping them and others getting a service - we're not responsible for these cuts. The politicians and senior council officials are. I will blame them. They've got this wrong, and asking us to choose who else to cut (which they have) so we can keep our service is wrong.
And yes, I am bitter.
Meetings about cuts or assessments don't have that upside. The stress and anxiety levels just get driven up and seem to hover at an uncomfortable edgy level for days. Sleeping, even without him here, gets to be something you celebrate and only comes when you're so exhausted you fall off doing something. Have to do something to stop the adrenalized thoughts going round and round in circles. Even resorted to low volume, watching channel Dave until dozed off last night.
I'll almost be happier once these cuts hit properly. At least we'll know exactly how hard things are going to be and can get on with living. Fighting them, when you know you'll almost certainly lose is really wearing. It's not like it'll stop when we're beaten, it just means life will be even harder than it is now. These cuts are real - we now know fairly well what's going to disappear - most of his transport, almost certainly some day care, probably some of his 'ancillary' services, and that's with us battling to keep them. The ones I really feel for are those with moderate learning disabilities. Our sons disability is obvious and we'll find ways to make sure his quality of life doesn't suffer, somehow - at someone's expense, if not our own. They are in line for effectively losing all their support, they won't understand what's happening or why and many of them will be left with no-one to fight their corner.
I'm not going to feel guilty that our sons service is stopping them and others getting a service - we're not responsible for these cuts. The politicians and senior council officials are. I will blame them. They've got this wrong, and asking us to choose who else to cut (which they have) so we can keep our service is wrong.
And yes, I am bitter.
Monday, January 31, 2011
Bitchy and scratchy
So much fro getting a life. This week looks pretty heavily booked already. All day Tuesday, all day Wednesday and Friday morning committed to meetings with County Council about cuts. Friday afternoon and this morning going through sons 'social care assessment' that's just arrived. (Still waiting for health care assessment - current timescale is now 3 to 4 months due to unavailability of staff.) So we've got this afternoon and Thursday to do everything else. And somewhere among all this is our sons care - which is not insubstantial and the most important thing of all.
I did get to chop wood yesterday - may fit in a bit of soldering this afternoon (I like soldering).
Son seems in reasonable health just now, slight chest infection coming under antibiotic control and scalp psoriasis settling down with gentle care. This psoriasis gets me down sometimes. It's quite severe and gets a lot worse when he's ill or stressed - and he can't tell us or scratch it himself. We just have to watch it really carefully and treat it quickly but gently. I can't really imagine how distressing it must be to have an itchy head all the time and be unable to do anything about it. I know it's theoretically one of his more minor problems but it must have a fairly major impact on his quality of life - that's why we get so concerned about it.
Anyway, back to the paperwork/meetings - I retired to get away from that - didn't happen.
I did get to chop wood yesterday - may fit in a bit of soldering this afternoon (I like soldering).
Son seems in reasonable health just now, slight chest infection coming under antibiotic control and scalp psoriasis settling down with gentle care. This psoriasis gets me down sometimes. It's quite severe and gets a lot worse when he's ill or stressed - and he can't tell us or scratch it himself. We just have to watch it really carefully and treat it quickly but gently. I can't really imagine how distressing it must be to have an itchy head all the time and be unable to do anything about it. I know it's theoretically one of his more minor problems but it must have a fairly major impact on his quality of life - that's why we get so concerned about it.
Anyway, back to the paperwork/meetings - I retired to get away from that - didn't happen.
Thursday, January 27, 2011
Got to get a life
I've had some salutary advice from someone I trust implicitly today. I need to get a bit of a life outside disability for my own good. They're right. I can't stop the caring, but our son's not too bad just now. Worrying about the cuts, going to meetings about them, campaigning against how they will affect him and his friends, writing to MP, councilors etc. has pretty much taken over of late. On top of that there's the perennial current issue with his care package - CQC v care service provider v nurses etc. - getting dealt with. All in all it is pretty much my life just now - blogging here is relatively light relief.
There's not a lot of joy about just now.
So I'm going to do something about it. I'm going to do a few of those things I used to enjoy a bit - something every day just because I want to - even if it's something small. I'll still have to go to the MPs surgery tomorrow and I'll still have at least x2 full days next week at 'cuts' meetings being held by our local Council, I'll still have to meet up with his care manager to sort out the present issue, ... but I will do something else as well.
If I get behind with the blog, apologies in advance - I may be doing something that's actually more fun - if I can think what that used to be ....
There's not a lot of joy about just now.
So I'm going to do something about it. I'm going to do a few of those things I used to enjoy a bit - something every day just because I want to - even if it's something small. I'll still have to go to the MPs surgery tomorrow and I'll still have at least x2 full days next week at 'cuts' meetings being held by our local Council, I'll still have to meet up with his care manager to sort out the present issue, ... but I will do something else as well.
If I get behind with the blog, apologies in advance - I may be doing something that's actually more fun - if I can think what that used to be ....
Tuesday, January 25, 2011
Health but not wealth
Had a good couple of days with our son over the weekend. Took him out shopping in the morning, country walk in the afternoon and to a local 'family games' evening on Saturday. he stayed awake and alert right through. For him this is a real achievement. He had a good lie in Sunday i.e. didn't surface until late afternoon (including the most chilled out bath you could imagine). Oxygen sats high throughout. Apart from being on antibiotics for a bit of chest infection and the accompanying 'thrush' his health is really not bad just now (grabs frantically to 'touch wood').
Meanwhile, on the cuts front, his review seems to have gone into freefall now that we've asked to see a copy of the assessment being taken to panel. It should have gone today, then seemed to be delayed for 3 weeks and now looks in the medium to long grass. I can only assume they were worried that what they were proposing wouldn't stand up to scrutiny. I have to say that they were quite unhappy we wanted to see the assessment at all and were very reluctant to accept we had any rights - I think 20 years caring full time with no help, 8 years with some support and being his parents and main advocate give us some authority in this.
I also note that word is also coming out that on top of the front line service cuts being implemented, the back office savings are also emerging. If we delay long enough, I don't think there'll be anyone left in Social Services to do our assessment. I don't feel any happiness that many of the social workers and commissioners look like being out of work. We may not have liked some of what they had to do, but I do feel their hearts were in the right place - they were just never given the resources to do their job properly and had to spend most of their time fighting a rearguard action that endeared them to no-one. With service cuts and job cuts we're going to be on the same side of the barricades soon.
Meanwhile, on the cuts front, his review seems to have gone into freefall now that we've asked to see a copy of the assessment being taken to panel. It should have gone today, then seemed to be delayed for 3 weeks and now looks in the medium to long grass. I can only assume they were worried that what they were proposing wouldn't stand up to scrutiny. I have to say that they were quite unhappy we wanted to see the assessment at all and were very reluctant to accept we had any rights - I think 20 years caring full time with no help, 8 years with some support and being his parents and main advocate give us some authority in this.
I also note that word is also coming out that on top of the front line service cuts being implemented, the back office savings are also emerging. If we delay long enough, I don't think there'll be anyone left in Social Services to do our assessment. I don't feel any happiness that many of the social workers and commissioners look like being out of work. We may not have liked some of what they had to do, but I do feel their hearts were in the right place - they were just never given the resources to do their job properly and had to spend most of their time fighting a rearguard action that endeared them to no-one. With service cuts and job cuts we're going to be on the same side of the barricades soon.
Thursday, January 20, 2011
Mumsnet lady
The number of people reading this blog has suddenly shot up - no doubt due to the publicity around Riven Vincent whose disabled child is being denied help by her local council because the government has cut the councils budget, so I feel obliged to comment.
I don't know all the details but I recognize the situation. We had similar battles with our local authority and it wasn't until our son was 18/20 years old that we got anything like an adequate service - and that after years of fighting and distress. Not everyone has the support we did and I feel for the family. I often feel guilty that we got a service when I knew others weren't - that's partly why I do this blog. We have to make it better for everyone. Riven should not be put in this position, now she's in it she must be helped out with a better service, and the government and councils must be made to provide these services for all who need them. We need all of you to help - there are lots of Rivens out there who haven't been pushed quite as far, and a significant number who've been pushed further. Mr. Cameron talking directly to her isn't a service, it's a PR job - she deserves a service. The cuts are making this worse and he's presiding over them.
On a side issue, we also had to deal with the press when our son was little - not on quite this scale. It wasn't a fun experience, we didn't want it, it got in the way, they told lies (not nasty ones, they just made things up), it didn't get us a better service and I see the press now as very much a last resort. Publicity like this may help this 'cause' in the long run but I hope it doesn't hurt the family as much as it did us - it isn't an option I'd choose and I suspect it isn't one they chose.
I don't know all the details but I recognize the situation. We had similar battles with our local authority and it wasn't until our son was 18/20 years old that we got anything like an adequate service - and that after years of fighting and distress. Not everyone has the support we did and I feel for the family. I often feel guilty that we got a service when I knew others weren't - that's partly why I do this blog. We have to make it better for everyone. Riven should not be put in this position, now she's in it she must be helped out with a better service, and the government and councils must be made to provide these services for all who need them. We need all of you to help - there are lots of Rivens out there who haven't been pushed quite as far, and a significant number who've been pushed further. Mr. Cameron talking directly to her isn't a service, it's a PR job - she deserves a service. The cuts are making this worse and he's presiding over them.
On a side issue, we also had to deal with the press when our son was little - not on quite this scale. It wasn't a fun experience, we didn't want it, it got in the way, they told lies (not nasty ones, they just made things up), it didn't get us a better service and I see the press now as very much a last resort. Publicity like this may help this 'cause' in the long run but I hope it doesn't hurt the family as much as it did us - it isn't an option I'd choose and I suspect it isn't one they chose.
Subscribe to:
Posts (Atom)
