Meanwhile back in the real world. (These days I tend to regard the world of CQC, DLA, Care Commissioners, etc. as a separate Alice Through the Looking Glass world - unfortunately despite it's surreal nature, it has a real impact on our lives)
Our son is quite good at present. The Oxygen saga has reared its head again - error on prescription means the engineer has limited his concentrator to minimal, but we're hoping to sort that out on Monday, meanwhile bottles will have to suffice. His chest seems OK at present, the high winds still precipitate his asthma, but the PEP mask therapy seems to be quite 'productive' in both senses - it seems to be working as a therapy and it appears to be clearing gunk from his peripheral air sacs, particularly the one prone to consolidation. It's also a lot less intrusive than 'beating'.
Fits are about average. He had a urine infection earlier in the week but the antibiotics seem to be clearing it up.
Getting support for the Mobility Allowance issue - daughter being particularly helpful in a very practical way - thank you.
Life this side of the Looking Glass on a relatively even keel - but I don't think the glass is shatterproof.
Thursday, October 28, 2010
Tuesday, October 26, 2010
CQC boxticking rules - not OK
We've had our initial meeting with care provider. It got quite emotional. We feel devalued as carers with 28 years experience whilst being left as his only care option while the administrative changes kick in. They were very sympathetic but have no option but to stop sending nurses to help covering the night shift when he's at home without breaking the law. They will also be acting illegally if they send nurses to our home when he is ill, or into hospital if he is admitted (despite having a detailed protocol agreed with the Health Trust), so it's even worse than we thought. Incidentally, if they can't send the nurses where he is (when ill) they will still have them contracted - they will have to pay them to do nothing or lay them off, while we do all his care, 24/7 unpaid.
This is all the result of CQC changing the registration rules. I've written to CQC and am awaiting an answer. We're arranging to meet the service commissioners and may be forced to take Direct Payment (against our will.)
We had a package of care that suited my son, worked well and was officially regarded as 'excellent' and innovative - but for purely administrative reasons this is now to be dismantled. We will rebuild it, but it will take time, stress and heartache, and I resent having to. It's already cost us many nights sleep, will almost certainly cost us more work and covering more shifts unassisted than we do now, and will not improve my sons care one iota. It may even cost the public more to administer. The best we'll get out of this is to insulate him from the changes, though if he gets ill during the changes, even this may not be possible.
This is all the result of CQC changing the registration rules. I've written to CQC and am awaiting an answer. We're arranging to meet the service commissioners and may be forced to take Direct Payment (against our will.)
We had a package of care that suited my son, worked well and was officially regarded as 'excellent' and innovative - but for purely administrative reasons this is now to be dismantled. We will rebuild it, but it will take time, stress and heartache, and I resent having to. It's already cost us many nights sleep, will almost certainly cost us more work and covering more shifts unassisted than we do now, and will not improve my sons care one iota. It may even cost the public more to administer. The best we'll get out of this is to insulate him from the changes, though if he gets ill during the changes, even this may not be possible.
Cutting those who can't fight back
It appears the Mobility Allowance cut applies to all people in 'residential care'. This is a major cut, £20 or £40 odd pounds a week per person. Lots of disabled people will lose their Motability adapted vehicles, some people use this for motorised wheelchairs as they can't self propel. One distressing aspect of this is that it was referred to briefly in George Osbornes statement - a passing comment referring to 'equalisation' which was only elaborated as a cut to Mobility Allowance about page 50 of the Treasury statement.
My request to write to MPs was not on my own son's behalf, though it does affect him. It was to stop this being enacted for all disabled people getting Mobility Allowance in 'residential care' - this is a standard care model for many disabled people living in the community - particularly multiply disabled, people with complex care needs and learning disabilities. These people often get only £20 a week 'spending money' because their care is paid for. Mobility Allowance allows them some independence - until this takes effect.
My request to write to MPs was not on my own son's behalf, though it does affect him. It was to stop this being enacted for all disabled people getting Mobility Allowance in 'residential care' - this is a standard care model for many disabled people living in the community - particularly multiply disabled, people with complex care needs and learning disabilities. These people often get only £20 a week 'spending money' because their care is paid for. Mobility Allowance allows them some independence - until this takes effect.
Friday, October 22, 2010
Stay at home
Just digesting the news that the governments spending review will take away my sons Mobility Allowance. He's officially classed as living in a one person 'nursing home' when not with us, so will lose one of the few benefits he gets. (As a nursing home he doesn't get Income Support etc.) His mobility Allowance bought and runs his wheelchair adapted van. He needs this to get a life, visit relatives, come home each week etc. with all his equipment, so public transport not an option.
Please speak to your MP about this. Even if it's Mr. Osborne!
I don't see any bankers under house arrest - that's what he's condemning disabled people to by taking this away.
Please speak to your MP about this. Even if it's Mr. Osborne!
I don't see any bankers under house arrest - that's what he's condemning disabled people to by taking this away.
Tuesday, October 19, 2010
Who regulates the regulator?
Who do you go to if the CQC rule changes have a detrimental impact on someones care? Presumably CQC itself.
For details see previous post, but generally, we had a good package of care that gave my son as normal a life as possible. Following the changed CQC registration regulations, our care provider would now be acting illegally if it allowed its nurses to look after him outside the designated nursing home location - so if he comes home, goes into hospital (both of which he does a lot), goes on holiday etc. etc. - he can't have any care. This is a major step backwards from a person centred plan and puts him at risk at home (as we need to sleep from time to time) and in hospital (as there aren't enough nurses on wards to 'special' him).
The only option we seem to have left is for us to take part of his budget ourselves and employ the nurses ourselves (because we aren't regulated! - is this daft or is it just me?). We don't know if the commissioners will wear this, or if the nurses will be willing to work directly for us, but it looks like we're going to have to find out. Meanwhile, no nursing care outside base, lots of risk if he gets ill or they can't cover a shift and mountains of work for us on top of his care when at home.
I know the provider could in theory register as a nursing agency but as a small charity it would go broke in the process of trying to fulfill all the requirements. The provider is on our side but shackled. If we let it go, he will be at risk and the service will collapse next time he's ill. We will be seeing the commissioner soon and I'll be writing to CQC myself when I've calmed down a bit.
This does not improve his care. We're at best not going to let it get any worse. The lack of flexibility and understanding of the real world at CQC is staggering. This was an 'excellent' rated service that will now be damaged by the very people who rated it 'excellent'.
Tick boxes rule, OK!
Not if I have anything to do with it.
Before I was cross, now I'm angry - and even I don't like me when I'm angry.
For details see previous post, but generally, we had a good package of care that gave my son as normal a life as possible. Following the changed CQC registration regulations, our care provider would now be acting illegally if it allowed its nurses to look after him outside the designated nursing home location - so if he comes home, goes into hospital (both of which he does a lot), goes on holiday etc. etc. - he can't have any care. This is a major step backwards from a person centred plan and puts him at risk at home (as we need to sleep from time to time) and in hospital (as there aren't enough nurses on wards to 'special' him).
The only option we seem to have left is for us to take part of his budget ourselves and employ the nurses ourselves (because we aren't regulated! - is this daft or is it just me?). We don't know if the commissioners will wear this, or if the nurses will be willing to work directly for us, but it looks like we're going to have to find out. Meanwhile, no nursing care outside base, lots of risk if he gets ill or they can't cover a shift and mountains of work for us on top of his care when at home.
I know the provider could in theory register as a nursing agency but as a small charity it would go broke in the process of trying to fulfill all the requirements. The provider is on our side but shackled. If we let it go, he will be at risk and the service will collapse next time he's ill. We will be seeing the commissioner soon and I'll be writing to CQC myself when I've calmed down a bit.
This does not improve his care. We're at best not going to let it get any worse. The lack of flexibility and understanding of the real world at CQC is staggering. This was an 'excellent' rated service that will now be damaged by the very people who rated it 'excellent'.
Tick boxes rule, OK!
Not if I have anything to do with it.
Before I was cross, now I'm angry - and even I don't like me when I'm angry.
Sunday, October 17, 2010
Bracing myself
I am really the shy retiring type. But having a disabled son to care for changes you. I haven't done the assertiveness course most of the professionals we deal with have been on, but I have had lots of experience - and tomorrow I'm going to need it, again.
Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week. (Yes I know this is backwards, but this is CQC, NHS, Social Services, provider networks etc. Alice through the Looking Glass land - it's also complicated as we do have some care 'on a different basis'.) Anyway, I have to brace myself and we'll probably end up playing Mrs. Nice and Mr. Nasty again. We do this quite deliberately these days - we need Mr. Nasty to stand up to the authorities and Mrs. Nice to maintain our relationship with these people so the service can continue between crises.
This is a very cynical way of operating and I heartily dislike it - I even disapprove sometimes, but in all this the 'prime directive' (thank you Star Trek) is the best care for our son. And if it helps us hang on to a good care package, I can live with my own disapproval. For CQC the 'prime directive' seems to be seeing that the box has been ticked (though they force someone else to tick it), for the NHS it seems to be spend as little as possible but avoid bad publicity (as the lawyers cost more than the service), Social Services have fewer qualms - they just want to save money at all costs, (to hell with the publicity, the press shout at them anyway).
To them it's all a complicated 9 to 5 game they get paid for playing. To us it's real life. We've won in the past because we tend not to stick to their game rules - it always seems to surprise them for some reason. I think it may come to that again. The fact that they're playing Monopoly and we're live, also helps - it can even be surreally entertaining occasionally. It must be very difficult dealing with people like us. Tough, give us what we need and you won't have to.
Tomorrow is the meeting where we'll be told we definitely can't have the nursing care at home that was effectively withdrawn last week. (Yes I know this is backwards, but this is CQC, NHS, Social Services, provider networks etc. Alice through the Looking Glass land - it's also complicated as we do have some care 'on a different basis'.) Anyway, I have to brace myself and we'll probably end up playing Mrs. Nice and Mr. Nasty again. We do this quite deliberately these days - we need Mr. Nasty to stand up to the authorities and Mrs. Nice to maintain our relationship with these people so the service can continue between crises.
This is a very cynical way of operating and I heartily dislike it - I even disapprove sometimes, but in all this the 'prime directive' (thank you Star Trek) is the best care for our son. And if it helps us hang on to a good care package, I can live with my own disapproval. For CQC the 'prime directive' seems to be seeing that the box has been ticked (though they force someone else to tick it), for the NHS it seems to be spend as little as possible but avoid bad publicity (as the lawyers cost more than the service), Social Services have fewer qualms - they just want to save money at all costs, (to hell with the publicity, the press shout at them anyway).
To them it's all a complicated 9 to 5 game they get paid for playing. To us it's real life. We've won in the past because we tend not to stick to their game rules - it always seems to surprise them for some reason. I think it may come to that again. The fact that they're playing Monopoly and we're live, also helps - it can even be surreally entertaining occasionally. It must be very difficult dealing with people like us. Tough, give us what we need and you won't have to.
Friday, October 8, 2010
Making it personal
Sorry for absence of late - the real world took precedence (see below) -
The most personal thing in the public arena for me this week has been Virginia Ironside's comments on BBC (that thank goodness I didn't see, but have read) on how she seems to think it's fine for mothers to smother their disabled children if they're in too much distress. Basically I thought this road had had a firm 'No Entry' sign erected 60 years ago in Nuremberg, but it seems the Daily Mail columnist has forgotten about the Jews, gypsies, homosexuals and disabled people who used to live in Germany. I was getting quite worked up about the care we give our own son and how we try to give him as good a life as we can, and how her comments devalue him, us and society in general, but I think my daughter put it into perspective. Her comments were more along the lines of - 'she's wrong, I can see where she's coming from as someone with no experience of disability having read the transcript in context, but she still definitely deserves a good slap' for being offensively wrong, massively insensitive and having her foot so far down her mouth she's in danger of tripping over when she eats. I'm taking my daughters advice and not going to dignify her comments with any further discussion.
Meanwhile in the real world, our own personal personalisation saga limps on. We have an excellent care package (CQC says so) but CQC can't cope with it's non standard form (it didn't have a problem as CSCI until it changed its own rules), so our care provider has now been told that, good though it is, it will be acting illegally if it continues sending nurses into our home. The care provider can't afford the beaurocratic requirements of registering as a nursing agency for just a few shifts a month, so we could lose an important part of his care package. We're still doing a 'workaround' but a major battle looks like looming which will drag in the Service Commissioners, Health Authority, probably our M.P. etc. etc. - all because the rule maker and enforcer has changed its own rules. The need for care hasn't changed and everyone agrees the current care service is excellent - but it's now going to have to change for purely admin. reasons. One suggestion made was that the problem would go away if he didn't come home - the fact that this would limit what he and we could do didn't seem to have registered. It now looks like we may not be able to have him home for Christmas and have no contingency in place for some nursing sickness. This makes a mockery of Person Centred Planning as well as the theory of the Personalisation. We will of course not be accepting this.
On another front, I've been involved with an early casualty of the current Governments June budget changes. In another capacity as a charity trustee, I was helping another person with disabilities move from the increasingly inappropriate flat she currently occupies to buy her own home with an interest only mortgage. There were lots of problems and complications but we had got there - deposit, specialist mortgage, legal and administrative hurdles vaulted (not effortlessly) when dear Mr. Osbourne changed the way the Revenue calculate mortgage interest for benefit purposes. The change means that she can't now afford it - by an extra £47 a week.
Not personal to me, but very personal to the person involved. A learning disabled person unexpectedly discharged from our local hospital to his carer (a friend of mine) still catheterised. He'd been pushed home from the nearby hospital in pouring rain in a wheelchair, dressed only in a hospital gown. No explanation of the catheterisation or discharge information for after care. When carer rang ward they seemed to have no record of the catheterisation either and no process for removal - it took a number of days to get someone qualified to remove it. I understand a formal complaint is being made. The words dignity, care and absence of, spring to mind.
The most personal thing in the public arena for me this week has been Virginia Ironside's comments on BBC (that thank goodness I didn't see, but have read) on how she seems to think it's fine for mothers to smother their disabled children if they're in too much distress. Basically I thought this road had had a firm 'No Entry' sign erected 60 years ago in Nuremberg, but it seems the Daily Mail columnist has forgotten about the Jews, gypsies, homosexuals and disabled people who used to live in Germany. I was getting quite worked up about the care we give our own son and how we try to give him as good a life as we can, and how her comments devalue him, us and society in general, but I think my daughter put it into perspective. Her comments were more along the lines of - 'she's wrong, I can see where she's coming from as someone with no experience of disability having read the transcript in context, but she still definitely deserves a good slap' for being offensively wrong, massively insensitive and having her foot so far down her mouth she's in danger of tripping over when she eats. I'm taking my daughters advice and not going to dignify her comments with any further discussion.
Meanwhile in the real world, our own personal personalisation saga limps on. We have an excellent care package (CQC says so) but CQC can't cope with it's non standard form (it didn't have a problem as CSCI until it changed its own rules), so our care provider has now been told that, good though it is, it will be acting illegally if it continues sending nurses into our home. The care provider can't afford the beaurocratic requirements of registering as a nursing agency for just a few shifts a month, so we could lose an important part of his care package. We're still doing a 'workaround' but a major battle looks like looming which will drag in the Service Commissioners, Health Authority, probably our M.P. etc. etc. - all because the rule maker and enforcer has changed its own rules. The need for care hasn't changed and everyone agrees the current care service is excellent - but it's now going to have to change for purely admin. reasons. One suggestion made was that the problem would go away if he didn't come home - the fact that this would limit what he and we could do didn't seem to have registered. It now looks like we may not be able to have him home for Christmas and have no contingency in place for some nursing sickness. This makes a mockery of Person Centred Planning as well as the theory of the Personalisation. We will of course not be accepting this.
On another front, I've been involved with an early casualty of the current Governments June budget changes. In another capacity as a charity trustee, I was helping another person with disabilities move from the increasingly inappropriate flat she currently occupies to buy her own home with an interest only mortgage. There were lots of problems and complications but we had got there - deposit, specialist mortgage, legal and administrative hurdles vaulted (not effortlessly) when dear Mr. Osbourne changed the way the Revenue calculate mortgage interest for benefit purposes. The change means that she can't now afford it - by an extra £47 a week.
Not personal to me, but very personal to the person involved. A learning disabled person unexpectedly discharged from our local hospital to his carer (a friend of mine) still catheterised. He'd been pushed home from the nearby hospital in pouring rain in a wheelchair, dressed only in a hospital gown. No explanation of the catheterisation or discharge information for after care. When carer rang ward they seemed to have no record of the catheterisation either and no process for removal - it took a number of days to get someone qualified to remove it. I understand a formal complaint is being made. The words dignity, care and absence of, spring to mind.
Wednesday, September 29, 2010
Now it's personal ........ isation
Personalisation of social services is not my favourite thing - as you may have gathered. I don't want it, have seen the damage it's being used to cause by cutting services and see it, like Care in the Community, as an unarguably 'good thing' that is being used to smoke screen cuts in real services for vulnerable people that need them. And now it looks like we're going to have to face them ourselves.
Our own service predates the whole 'personalisation agenda'. It's based on a Person Centred Plan and provided by ourselves and two charitable service providers, funded originally jointly by Health and Social Services. It's complicated but it works and was recently rated excellent by CQC. But now CQC has changed it's regulatory requirements and neither service can afford the complexity of registering under all the headings required for part of the service for just one client. The current proposal is that the part of the service they can't register for be passed to us (because as relatives/carers we do don't need to register) and we employ the same people/service under Direct Payments.
There is no change to the service, no one benefits, it is a wasteful duplication of work and it complicates matters even more. We will have responsibility for employment, money and administration on top of the care we deliver - at no cost of course. This is daft, but to keep legal we may well have to go along with it.
I don't yet know if moving this part of the service to us will reduce the money provided for it but suspect it will. I'm not yet sure what we are going to do about this because leaving all my principles behind, the only thing that really matters is that my son gets the best service he can. I won't jeapordise his care for this but I'm deeply unhappy about it.
A few riders -
I don't blame the service providers, they are doing their best to provide a high quality service but have been put in an impossible position. I do blame CQC and the 'Personalisation Agenda' for it's 'one size fits all, tick box culture'.
The fact that as family/carers we don't have to register is bonkers - it's in the family, not service providers, where most abuse and neglect takes place - this would not protect my son if we had been abusive parents - I thought that's what CQC was there for.
We are relatively articulate advocates for my son. From my involvement with other people with learning disabilities, I know many people who will not be able to argue their corner themselves - and the cost of advocacy and brokerage comes out of the service package cost, reducing actual care even more. If we can't win this battle, what hope for them.
I haven't given up but I am very worried.
Our own service predates the whole 'personalisation agenda'. It's based on a Person Centred Plan and provided by ourselves and two charitable service providers, funded originally jointly by Health and Social Services. It's complicated but it works and was recently rated excellent by CQC. But now CQC has changed it's regulatory requirements and neither service can afford the complexity of registering under all the headings required for part of the service for just one client. The current proposal is that the part of the service they can't register for be passed to us (because as relatives/carers we do don't need to register) and we employ the same people/service under Direct Payments.
There is no change to the service, no one benefits, it is a wasteful duplication of work and it complicates matters even more. We will have responsibility for employment, money and administration on top of the care we deliver - at no cost of course. This is daft, but to keep legal we may well have to go along with it.
I don't yet know if moving this part of the service to us will reduce the money provided for it but suspect it will. I'm not yet sure what we are going to do about this because leaving all my principles behind, the only thing that really matters is that my son gets the best service he can. I won't jeapordise his care for this but I'm deeply unhappy about it.
A few riders -
I don't blame the service providers, they are doing their best to provide a high quality service but have been put in an impossible position. I do blame CQC and the 'Personalisation Agenda' for it's 'one size fits all, tick box culture'.
The fact that as family/carers we don't have to register is bonkers - it's in the family, not service providers, where most abuse and neglect takes place - this would not protect my son if we had been abusive parents - I thought that's what CQC was there for.
We are relatively articulate advocates for my son. From my involvement with other people with learning disabilities, I know many people who will not be able to argue their corner themselves - and the cost of advocacy and brokerage comes out of the service package cost, reducing actual care even more. If we can't win this battle, what hope for them.
I haven't given up but I am very worried.
Tuesday, September 28, 2010
Pump up the volume
My son is fed directly through his stomach wall by a feed pump. (As he can't swallow properly, anything by mouth is as likely to go down onto his lungs as into his digestive tract - this is dangerous.)
So we got a call from one of the nurses to tell us that his pump had developed a fault. (Yes the equipment is crap, but I suppose all equipment breaks down occasionally - though you'd think medical stuff would be a bit more reliable.) So she rings the supplier who says ' just put it back on charge for a bit, it should be OK' - doesn't this remind you of the IT helpdesk 'switch it off and on again routine'. What she's really saying is 'despite using this machine for over 15 years you haven't a clue and probably isn't even broken'. Patronising alienating and wrong - all in one sentence. The fact that it should have been serviced 5 months ago (and wasn't) can't have anything to do with this, can it.
Rang them again - this time, 'oh, as you have more than one pump we won't replace the broken one' (we have more than one because they didn't call to collect the other when it broke down last time) 'and we know the machine is overdue for a service, but we're short of spare pumps and engineers so we aren't doing it yet'.
I think a robust call to the contracting dietician may be in order .... But we can do without this. And when all the personalisation is in place we'll be able to shout at them direct ourselves - so that will make it all better, won't it.
PS - yes I'm well aware of the 'yellow card' system to report poor medical equipment, and we use it regularly. We are therefore marked down as troublemakers. And the NHS still use this stuff because it's cheap - it's cheap because it's rubbish!
So we got a call from one of the nurses to tell us that his pump had developed a fault. (Yes the equipment is crap, but I suppose all equipment breaks down occasionally - though you'd think medical stuff would be a bit more reliable.) So she rings the supplier who says ' just put it back on charge for a bit, it should be OK' - doesn't this remind you of the IT helpdesk 'switch it off and on again routine'. What she's really saying is 'despite using this machine for over 15 years you haven't a clue and probably isn't even broken'. Patronising alienating and wrong - all in one sentence. The fact that it should have been serviced 5 months ago (and wasn't) can't have anything to do with this, can it.
Rang them again - this time, 'oh, as you have more than one pump we won't replace the broken one' (we have more than one because they didn't call to collect the other when it broke down last time) 'and we know the machine is overdue for a service, but we're short of spare pumps and engineers so we aren't doing it yet'.
I think a robust call to the contracting dietician may be in order .... But we can do without this. And when all the personalisation is in place we'll be able to shout at them direct ourselves - so that will make it all better, won't it.
PS - yes I'm well aware of the 'yellow card' system to report poor medical equipment, and we use it regularly. We are therefore marked down as troublemakers. And the NHS still use this stuff because it's cheap - it's cheap because it's rubbish!
Thursday, September 23, 2010
Every single breath you take costs
We've just been informed that my son doesn't use enough oxygen.
Yes he does - he uses what he needs and sometimes we have to help him with more.
But the meter readings on his oxygen concentrator mean the paperwork for the firm that supplies it have persuaded them he doesn't use enough to justify it - so they rang up wanting to take it away. We said no ... and we rang the oxygen clinic who said - 'oh yes he does need it, but not steady, high all the time'.
Because we check his oxygen saturations and only give him oxygen when he needs it, and then give him what he needs rather than lots all the time, the overall amount is low. But this doesn't fit the paperwork. (On this argument, no-one needs a stomach as they don't eat all the time.)
Eventually, after multiple phone calls and metaphorical head banging on virtual brick walls, sanity - or a crude approximation of it - prevailed. We can keep things much as they are and get rid of some stuff they supplied that we don't use. If we hadn't argued, they would have turned up and removed the concentrator - some people aren't as bloody minded as us and might have let them - please let this not have happened.
We don't need this. This is paperwork driving treatment. But we now have to justify the air he breathes.
PS This is what happens when health services get contracted out and it makes me very cross. We could have avoided this 'problem' by simply letting the oxygen run unused - but in our innocence we thought that would be wasteful.
Yes he does - he uses what he needs and sometimes we have to help him with more.
But the meter readings on his oxygen concentrator mean the paperwork for the firm that supplies it have persuaded them he doesn't use enough to justify it - so they rang up wanting to take it away. We said no ... and we rang the oxygen clinic who said - 'oh yes he does need it, but not steady, high all the time'.
Because we check his oxygen saturations and only give him oxygen when he needs it, and then give him what he needs rather than lots all the time, the overall amount is low. But this doesn't fit the paperwork. (On this argument, no-one needs a stomach as they don't eat all the time.)
Eventually, after multiple phone calls and metaphorical head banging on virtual brick walls, sanity - or a crude approximation of it - prevailed. We can keep things much as they are and get rid of some stuff they supplied that we don't use. If we hadn't argued, they would have turned up and removed the concentrator - some people aren't as bloody minded as us and might have let them - please let this not have happened.
We don't need this. This is paperwork driving treatment. But we now have to justify the air he breathes.
PS This is what happens when health services get contracted out and it makes me very cross. We could have avoided this 'problem' by simply letting the oxygen run unused - but in our innocence we thought that would be wasteful.
Wednesday, September 22, 2010
Personalisation - by order
As a carer, I've just received a copy of a presentation given by our local head of commissioning on the way forward for personalisation, locally. Afraid my worst fears were confirmed - not so much by the content, which was the usual '7 easy (!) steps to a personalised service' type, but the order. The most worrying thing was that step 1 was 'how much money you'd get' and step 2 'what services you can get' - so they decide how much you get before they decide what you need - again.
They really don't get it - personalisation is meant to be about the right service for you, not how much can they keep the service from costing. I'm sure they'll come back saying 'Oh, it's not meant to be like that' but it's the attitude and the fundamental mindset that always puts the cost before the service. Personalisation is meant to be about services but the evidence seems to be that it's really about 'personalising' service cuts.
They really don't get it - personalisation is meant to be about the right service for you, not how much can they keep the service from costing. I'm sure they'll come back saying 'Oh, it's not meant to be like that' but it's the attitude and the fundamental mindset that always puts the cost before the service. Personalisation is meant to be about services but the evidence seems to be that it's really about 'personalising' service cuts.
Tuesday, September 21, 2010
Disconnected
A set of disconnected questions -
We got a break last week - at our own expense and facilitated by our own efforts. First for a very long time. I seem to remember the LibDems had a policy of one weeks break for all carers - but it's all gone quiet now they're 'in power'. I don't suppose it's something they intend sticking to as it would seem to line up well with their best mates 'Big Society' drive .... or am I just being silly?
Anyone see the article on two disabled people who died after being left in a van for 20 hours because their care home owner forgot about them (in Spain.)? Grauniad article at http://www.guardian.co.uk/world/2010/sep/21/spain-pensioners-death-madrid Of course it couldn't happen here .... and people with a learning disability couldn't die of neglect in hospital (see Mencap report), or be driven to suicide by antisocial neighbours (see any newspaper in last few months) .... or could it?
Am I alone in feeling that we're being set up for a major kicking? The cuts haven't hit yet, but we keep being told they're coming. It feels very like, not only are they going to be bad, and aimed at the most vulnerable (bankers have the resources to fight back) but they want to be able to say 'Well we told you they were coming.' Warning someone you're going to kick them, doesn't justify the kick .... or in this surreal world, maybe it does?
We got a break last week - at our own expense and facilitated by our own efforts. First for a very long time. I seem to remember the LibDems had a policy of one weeks break for all carers - but it's all gone quiet now they're 'in power'. I don't suppose it's something they intend sticking to as it would seem to line up well with their best mates 'Big Society' drive .... or am I just being silly?
Anyone see the article on two disabled people who died after being left in a van for 20 hours because their care home owner forgot about them (in Spain.)? Grauniad article at http://www.guardian.co.uk/world/2010/sep/21/spain-pensioners-death-madrid Of course it couldn't happen here .... and people with a learning disability couldn't die of neglect in hospital (see Mencap report), or be driven to suicide by antisocial neighbours (see any newspaper in last few months) .... or could it?
Am I alone in feeling that we're being set up for a major kicking? The cuts haven't hit yet, but we keep being told they're coming. It feels very like, not only are they going to be bad, and aimed at the most vulnerable (bankers have the resources to fight back) but they want to be able to say 'Well we told you they were coming.' Warning someone you're going to kick them, doesn't justify the kick .... or in this surreal world, maybe it does?
Monday, September 20, 2010
Thanks for the care
We've had a break. This is a big event - a week away in another part of the country without most of the responsibilities or looking after our son. Well almost - we could only get a one week, and we didn't know until a day or so before that we would be able to go, and we did need to ring in to support/advise every day. But we did get away, got some relaxation and rest.
Fortunately, his chest behaved itself and we didn't have to come back early to sort out any critical issues. (we've had to in the past.) Thank you to the nurses and care provider organisations. I know it's their j0b and they get paid but they don't have to do it, the pay isn't that great and they do care about him - it's not just a job, and we're very grateful. They are good people.
I suppose this can be seen as an anti-rant, but there's a real danger the work these people do is taken for granted - it shouldn't be. I know we do his care for nothing, but if he wasn't disabled, would I do a job like this when I could probably get paid more doing something 'valuable' like banking. They do it and ought to be recognised for that. Thank you - you know who you all are - and we do appreciate you.
Fortunately, his chest behaved itself and we didn't have to come back early to sort out any critical issues. (we've had to in the past.) Thank you to the nurses and care provider organisations. I know it's their j0b and they get paid but they don't have to do it, the pay isn't that great and they do care about him - it's not just a job, and we're very grateful. They are good people.
I suppose this can be seen as an anti-rant, but there's a real danger the work these people do is taken for granted - it shouldn't be. I know we do his care for nothing, but if he wasn't disabled, would I do a job like this when I could probably get paid more doing something 'valuable' like banking. They do it and ought to be recognised for that. Thank you - you know who you all are - and we do appreciate you.
Thursday, September 9, 2010
Every breath you take
In case you were wondering - my son is improving - the chest infection looks like its cleared. His chest expands and contracts with air - it's called breathing, and it's great and we don't take it for granted.
He's still tiring easily but he's taking an interest and more awake than he has been, more of the time. As you'll have noticed on recent posts, I can now get back to being a pain in the neck of the health and social services apparatus because the issues haven't suddenly gone away - until next time he's ill. (I don't think even they would want my son to be ill just so they could shut me up for a bit - that way lies paranoia... )
He's still tiring easily but he's taking an interest and more awake than he has been, more of the time. As you'll have noticed on recent posts, I can now get back to being a pain in the neck of the health and social services apparatus because the issues haven't suddenly gone away - until next time he's ill. (I don't think even they would want my son to be ill just so they could shut me up for a bit - that way lies paranoia... )
Jewel theft
Anyone who has a child with a learning disability knows he/she gets less good health care than the general population. They don't always understand that pain isn't normal and can often have something done about it - and they often can't communicate it until it gets extreme. Well now research shows, it's official. Prof. Emerson and Dr. Baines at Lancaster University have just produced a report 'Health Inequalities & people with learning disabilities.' that spells out how and who are affected - and how poorly these people are served. They die younger, have more illness and the current health service isn't responding proportionately. It may not be news but it is true.
An personal example -
We've watched (on the ward) people with learning disabilities being admitted to hospital needing a gastrostomy (feeding tube) replaced. It actually takes 15 minutes and doesn't need a doctor or even a qualified nurse - I've done one myself and my wife is regularly fallback and helps train nurses in this procedure. It has to be done promptly - because all the persons feed, liquids and medication go down it, and also because if it isn't, the hole into the stomach closes up and needs an operation to reopen it. We watched one learning disabled lady unecessarily admitted to hospital and not get hers done for four days - no food, no drink, no epilepsy meds, much distress and a number of complications - I don't know if she had to be operated on. There was no one trained for this procedure on duty over the Bank Holiday.
I didn't stand idly by and just watch, but when I did comment it was made very clear to me that it was none of my business and our own position would be affected if I took it any further. We were discharged later that day.
I've mentioned elsewhere on this blog how inadequate hospitals are at dealing with disability and how they put vulnerable people at risk. I don't blame the individual doctors, nurses and nursing assistants - I blame a 'one size fits all' system with a 'tick box' culture. I grew up with the NHS as the crown jewel in a welfare state, with decent health care free to those who needed it - somebody stole the crown jewel and replaced it with a very poor paste fake - and I want it back.
An personal example -
We've watched (on the ward) people with learning disabilities being admitted to hospital needing a gastrostomy (feeding tube) replaced. It actually takes 15 minutes and doesn't need a doctor or even a qualified nurse - I've done one myself and my wife is regularly fallback and helps train nurses in this procedure. It has to be done promptly - because all the persons feed, liquids and medication go down it, and also because if it isn't, the hole into the stomach closes up and needs an operation to reopen it. We watched one learning disabled lady unecessarily admitted to hospital and not get hers done for four days - no food, no drink, no epilepsy meds, much distress and a number of complications - I don't know if she had to be operated on. There was no one trained for this procedure on duty over the Bank Holiday.
I didn't stand idly by and just watch, but when I did comment it was made very clear to me that it was none of my business and our own position would be affected if I took it any further. We were discharged later that day.
I've mentioned elsewhere on this blog how inadequate hospitals are at dealing with disability and how they put vulnerable people at risk. I don't blame the individual doctors, nurses and nursing assistants - I blame a 'one size fits all' system with a 'tick box' culture. I grew up with the NHS as the crown jewel in a welfare state, with decent health care free to those who needed it - somebody stole the crown jewel and replaced it with a very poor paste fake - and I want it back.
Wednesday, September 8, 2010
Plea for support
I'd just like to ask anyone reading this to consider supporting the Mencap 'Changing Places' campaign. Not about cross dressing or Andy pretending to be disabled on TV - simply trying to get places where people who can't use a normal toilet can get changed without having to go home early. The website is at http://www.mencap.org.uk/case.asp?id=448 if you want to know more.
I know there are cuts coming but I refuse to stop pushing for a better life for disabled people because the politicians have decided we're all going to suffer. Whatever the economy does, it isn't right that we have to change our son on the toilet floor. It's not dignified, it's not hygenic and it's not right.
If you know a councillor, tell them - if you are a councillor, provide one. Please.
I know there are cuts coming but I refuse to stop pushing for a better life for disabled people because the politicians have decided we're all going to suffer. Whatever the economy does, it isn't right that we have to change our son on the toilet floor. It's not dignified, it's not hygenic and it's not right.
If you know a councillor, tell them - if you are a councillor, provide one. Please.
Tuesday, September 7, 2010
Megaphone diplomacy
I have to say something about the 'coming cuts'. They worry the hell out of me. And the only thing I can do about them is refuse to accept that they are inevitable.
People with disabilities and their carers certainly aren't to blame - they haven't enough money to indulge in risky investments, property speculation or spend beyond their means (they were too poor to be lent money anyway.) Yet somehow the likes of Mr Diamond at Barclays, gets a new job with £11m.
OK, so life's not fair.
But spending money on care and people with disabilities should help us out of the recession. Carers, paid or unpaid, have such low incomes that any money they do gets spent directly on necessities - and so provides employment for others making, distributing and selling basic goods. It doesn't get frittered away into sub prime loans, hedge funds and dubious stock futures. And it's not like we're asking for more, just don't take away the little we have. (And we should get much of the money back when the government sells the banks off again.)
OK, so life's not rational.
But if something is unfair and daft - somebody, somewhere has to say so.
These cuts are unfair and daft.
Anybody got a megaphone?
People with disabilities and their carers certainly aren't to blame - they haven't enough money to indulge in risky investments, property speculation or spend beyond their means (they were too poor to be lent money anyway.) Yet somehow the likes of Mr Diamond at Barclays, gets a new job with £11m.
OK, so life's not fair.
But spending money on care and people with disabilities should help us out of the recession. Carers, paid or unpaid, have such low incomes that any money they do gets spent directly on necessities - and so provides employment for others making, distributing and selling basic goods. It doesn't get frittered away into sub prime loans, hedge funds and dubious stock futures. And it's not like we're asking for more, just don't take away the little we have. (And we should get much of the money back when the government sells the banks off again.)
OK, so life's not rational.
But if something is unfair and daft - somebody, somewhere has to say so.
These cuts are unfair and daft.
Anybody got a megaphone?
Thursday, September 2, 2010
Bit of a worry
4:45a.m. phone call. Adrenalin wake up. It's OK, but he's started fitting quite a bit and new nurse on first lone night shift, so wife goes over to support. Glad she rang - rather a broken night than a fits out of control or a nurse who isn't happy with his care.
So, wife goes over there and I get to stay here sweating (one parent is support, two is pressure.). I know she has the harder job but it's still hard waiting to hear he's settled - or not. No point sleeping now - not that I'd be able to.
I know he'll be OK, he's done this lots of times. It's just the not knowing doesn't get any easier. I should see this as an opportunity for 'spare time' but too hyped to do anything productive.
Sleep well it could be a good sunrise.
So, wife goes over there and I get to stay here sweating (one parent is support, two is pressure.). I know she has the harder job but it's still hard waiting to hear he's settled - or not. No point sleeping now - not that I'd be able to.
I know he'll be OK, he's done this lots of times. It's just the not knowing doesn't get any easier. I should see this as an opportunity for 'spare time' but too hyped to do anything productive.
Sleep well it could be a good sunrise.
Monday, August 30, 2010
Nursing by numbers - sorry, wrong number
In a rare idle moment, I saw this article on the BBC news website http://www.bbc.co.uk/news/health-11097822 It's all about fears that elderly people getting malnourished in hospital. I'm afraid it got me rather angry. This is simply a different manifestation of what Mencap found in their 'Death by Indiference' report on people with learning disabilities in hospital. What really got my ire up was the perennial assumption, seemingly by all concerned, that this could be solved by monitoring and procedures - introducing red trays etc. for people at risk.
Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.
Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.
I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'
Rant not over - it's not over until the thin lady dies.
Monitoring and procedures are not a substitute for care. People's conditions change, procedures don't always get implemented accurately, individuals fall through the gaps - and die. You'll be aware of my abhorrence of nursing by numbers and how hospitals are bad for people with disabilities. I don't blame the individual nurses - bless them, there are precious few around these days. The people visitors and patients take for nurses are actually nursing assistants in the main (or care staff in the community) who, because they have limited training, need the procedures to do their job. We've actually had one agency nurse say to us that she 'didn't do care - she had the nursing assistants for that' - she was only used to manning the nurses station, dispensing medication and ward/nursing home management. Our own package uses nurses precisely so that they have the skill and judgement to use their discretion, but they are now working under so many protocols, procedures and guidelines that we have to intervene when the rules work against his best interests.
Example - protocols state that if he has a fit lasting over 5 mins. give chloral hydrate. He almost always has a fit on waking. At present he has a chest infection. Result of chloral being given is that he was knocked out for over 12 hours - no coughing. Physio and PEP attempted by nurses but as it caused his O2 to fall initially, not proceeded with. He would have re-consolidated and ... draw your own conclusions. Upshot is that we had to go round and do physio and PEP ourselves, result lots of gunk removed from chest - all's well, (not quite all) with the world. Everyone knows the protocols don't work but they have to follow them or their nursing PIN number is at risk.
I know it's about resources - but that doesn't make it acceptable. There was another situation last century where the defence 'I was only following orders' was deemed unacceptable - it seems now to be the normal and only basis for action in this context. Mencap and others have raised this issue already. It isn't more rules that are needed - it's more people giving care. I wait in apprehension for the headline 'Old lady dies because she was given wrong colour tray.'
Rant not over - it's not over until the thin lady dies.
Saturday, August 28, 2010
Beating people can be good
I don't think I'm a control freak, but I'm probably not the best person to judge that (or if I am, I probably am the best judge!). But letting other people take responsibility for my son, and not knowing how he is when he's ill is really hard. As I've said before, we have a really good nursing team, but he needs a lot of chest physio just now to prevent the infection re-consolidating. They're good nurses but variable at doing physio, so we find ourselves going in, even when he's not officially with us, to do extra physio and PEP. We try not to offend them but I'm afraid a bit of irritation with mum and dad is a small price to pay for an uninfected chest.
He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired. The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical. Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.
PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections. On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently. It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs. It doesn't shift the debris - that needs something physical, like coughing or physio. I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs. I know physio is often prescribed, but the amount is usually trivial and not available at weekends. I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).
He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired. The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical. Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.
PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections. On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently. It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs. It doesn't shift the debris - that needs something physical, like coughing or physio. I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs. I know physio is often prescribed, but the amount is usually trivial and not available at weekends. I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).
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