We've had some positive news from the medics and physios over the last couple of days: Viv has recovered well from her latest op and things look bright.
Our physio explained why this might be: Viv has been off her legs since February 2017 but she has been doing regular rehab exercises almost daily. The latest op has, for want of a better way of putting it, fixed a few things in her brain; her brain is once again able to tell her legs what to do, and her legs are able to respond.
The rehab regime Viv has followed has been possible because she has been at home, in my care. If she had been in a care home that wouldn't have been the case; the physio said she would probably have been left, to be bed bound, for the rest of her days.
There is this view that patients leave hospital to go into care - that is actually what was proposed for Viv three weeks ago until I got my Power of Attorney out. Care doesn't cure, though; a home environment, with the right support, is a far better place for someone to get well.
For many patients it may be that the home environment is not suitable for their rehab; but shouldn't efforts be made to change that, and to get people thinking about their likely needs in older age, to keep them out of care?
Also, shouldn't social services be a little less risk averse, and let people live at home if it is at all possible, rather than placing them in care homes where they are just kept in bed all day 'for their own good, for they might fall'?
Friday, 30 March 2018
Tuesday, 27 March 2018
Retirement
There was a program on TV this morning about retirement, and how wonderful it is ... lots of time for hobbies, meeting people, and all of that. One thing that was missing was any sort of discussion over what the purpose of retirement is. Surely it is to prepare for, and provide, care for ourselves and our loved ones as we grow old.
I wondered how many of the wealthy retirees enjoying their pilates sessions had sorted out powers of attorney, or knew whether their pensions would allow them to enjoy their lifestyle for ever? (Also, why were people talking about maintaining their lifestyle from working into retirement - I used to get up at 5.30 and catch the 6.47 to London every day, I don't want to do that now! I also used to spend £1200 a month on the mortgage, and £500 on a season ticket... why would I want to maintain that?)
I was just seventeen months into retirement (and had not actually started to draw my pension) when Viv was taken ill. I wasn't prepared at all for dealing with carers, district nurses, doctors, social workers and the rest. Shouldn't that be what we should be doing in retirement, one way or another, rather than just frittering our time away on our social lives - even if that does keep you healthier?
I wondered how many of the wealthy retirees enjoying their pilates sessions had sorted out powers of attorney, or knew whether their pensions would allow them to enjoy their lifestyle for ever? (Also, why were people talking about maintaining their lifestyle from working into retirement - I used to get up at 5.30 and catch the 6.47 to London every day, I don't want to do that now! I also used to spend £1200 a month on the mortgage, and £500 on a season ticket... why would I want to maintain that?)
I was just seventeen months into retirement (and had not actually started to draw my pension) when Viv was taken ill. I wasn't prepared at all for dealing with carers, district nurses, doctors, social workers and the rest. Shouldn't that be what we should be doing in retirement, one way or another, rather than just frittering our time away on our social lives - even if that does keep you healthier?
Thursday, 22 March 2018
'Death of early retirement'
Today's Daily Mail has the above headline on page 2. Apparently, in seventeen years time no-one will retire before the age of 65.
It's all due to pension changes, and the fact we're living longer.
So, what will happen if someone aged around 60 needs their partner (similar age) to care for them? If all their savings are tied up in pensions they'll need state-funded carers to help, because the partner won't be able to afford to give up work to do the caring.
I've mentioned before that the fundamental problem with pensions is that you need to save into them when you're young - under 25 if you want to draw them at 60-65! What we're seeing with the care / pension funding crisis is, in fact, a consequence of the various policies aimed at keeping younsters off the jobless registers - which also kept them out of work: things like keeping them at school to 18, 50% going to university, no dole for students, etc.
We need more people working, not lounging around supposedly studying for pointless degrees.
It's all due to pension changes, and the fact we're living longer.
So, what will happen if someone aged around 60 needs their partner (similar age) to care for them? If all their savings are tied up in pensions they'll need state-funded carers to help, because the partner won't be able to afford to give up work to do the caring.
I've mentioned before that the fundamental problem with pensions is that you need to save into them when you're young - under 25 if you want to draw them at 60-65! What we're seeing with the care / pension funding crisis is, in fact, a consequence of the various policies aimed at keeping younsters off the jobless registers - which also kept them out of work: things like keeping them at school to 18, 50% going to university, no dole for students, etc.
We need more people working, not lounging around supposedly studying for pointless degrees.
Tuesday, 20 March 2018
Appointments not available
Viv left hospital last night, and we have to make an appointment with the GP who has been involved in her case to update him and to discuss ongoing aspects of her treatment.
I phoned the surgery now; they said there are no appointments available for that particular doctor. We'd have to queue outside the door at 8am on one of the days he's in.
I enquired further; apparently they are not taking any appointments for April yet. That's just two weeks away! We aren't going to join the Soviet-style morning queue so I'll phone back next week and see if they have any appointments available for the right doctor then.
No wonder A&E is deluged if it's this difficult to get a GP appointment! In my working days I often used to set up meetings a month or so in advance; we've also got dental appointments in April. If the dentists can manage this, why can't the doctors?
I phoned the surgery now; they said there are no appointments available for that particular doctor. We'd have to queue outside the door at 8am on one of the days he's in.
I enquired further; apparently they are not taking any appointments for April yet. That's just two weeks away! We aren't going to join the Soviet-style morning queue so I'll phone back next week and see if they have any appointments available for the right doctor then.
No wonder A&E is deluged if it's this difficult to get a GP appointment! In my working days I often used to set up meetings a month or so in advance; we've also got dental appointments in April. If the dentists can manage this, why can't the doctors?
Monday, 19 March 2018
Lesson from History
Saturday's Daily Telegraph contained a story that the government are proposing to increase the tax burden on the elderly to fund the NHS.
The TV was on when I read it; a program on Yesterday, titled 'The Nazis - a warning from history.'
The elderly, or baby boomers, seem to be being blamed for an awful lot nowadays - lack of funds for social care, the queues in the NHS, the housing crisis, etc. I'm not sure that's all terribly fair (youngsters have been discouraged from working in their teens for the last couple of decades, to keep the jopbless figures down.... so there's less tax income, for instance, perhaps?)
The worrying thing is that 'the old' are being blamed for things by those who should know better. One parliamentarian has even suggested their votes should be ignored! How far is that from the way the Nazis started out with the Jews?
There's a desire among 'the elite' to appeal to youngsters nowadays; does that really have to mean disenfranchising those over fifty?
Where it all seems to go askew is that many baby boomers are funding their own social care (as Viv is), aren't staying in a job that a younger person could do, and aren't living in a huge house blocking youngsters from getting on the housing ladder (our 900 sq ft property is just right for the two of us). The problems being blamed on baby boomers caused by much more complex issues, that perhaps the politicians don't want to admit to.
The TV was on when I read it; a program on Yesterday, titled 'The Nazis - a warning from history.'
The elderly, or baby boomers, seem to be being blamed for an awful lot nowadays - lack of funds for social care, the queues in the NHS, the housing crisis, etc. I'm not sure that's all terribly fair (youngsters have been discouraged from working in their teens for the last couple of decades, to keep the jopbless figures down.... so there's less tax income, for instance, perhaps?)
The worrying thing is that 'the old' are being blamed for things by those who should know better. One parliamentarian has even suggested their votes should be ignored! How far is that from the way the Nazis started out with the Jews?
There's a desire among 'the elite' to appeal to youngsters nowadays; does that really have to mean disenfranchising those over fifty?
Where it all seems to go askew is that many baby boomers are funding their own social care (as Viv is), aren't staying in a job that a younger person could do, and aren't living in a huge house blocking youngsters from getting on the housing ladder (our 900 sq ft property is just right for the two of us). The problems being blamed on baby boomers caused by much more complex issues, that perhaps the politicians don't want to admit to.
Saturday, 17 March 2018
Pensions and care funding
There's an article in The Guardian today (https://www.theguardian.com/commentisfree/2018/mar/16/death-retirement-striking-lecturers-pensions) that has a very one-sided, 'elite' view of the pension reforms that have taken place since the 1980s. It complains about the death of defined benefit pensions and how defined contribution pensions aren't as good.
A key point that the author misses is that what is 'good' is subjective; he also fails to mention that, with DC schemes, there is much more of a need for the individual to understand how pensions work.
You may pay into a defined benefit pension for 50 years (yes, some of us started work at 15 - not something many of today's snowflake generation would seemingly consider!), pay in a hundred thousand or so in your own contributions, get a supposedly generous pension of £8K or so per annum, and die after two years. You don't get your money back.
What's more, you can't dip into a defined benefit pension to fund short term emergencies - like care. Viv has had carers for a year or so, the costs have varied but have at times been as much as £2500 per month. We've been able to fund that by drawdown from our defined contribution pension pot.
If Viv and I had only defined benefit pensions we'd have been dependent upon council funding for her care. This has two disadvantages: 1) it adds to the council adult social care bill and 2) if your care is funded you have much less flexibility about what you can get your carers to do for you - you have to do what Social Services say. For instance, we've had carers helping with rehab, which would not be funded by social services.
I don't know about everyone, but the last thing we want is some busy body from the council coming in and telling us what we can and can't do. Our pensions are our money, we're spending them sensibly (yes, we have enough to see us beyond 80, and have consulted a Financial Advisor) and we want care that suits us. The pensions reforms of recent years have helped us achieve this.
Surely using personal pension funds to fund care is better than the state having to pick up the tab? Is it not just another case of 'the elite' telling us plebs we can't be trusted and don't understand what we're doing (as with Brexit) when in fact we know perfectly well and have things wholly under control.
My own view as to the problem with pensions is that people aren't paying in enough when they're young - you need 40 years at least to build up a pension, and many today don't seem to realise the importance of that. I learnt it at University - oddly enough, the same university at which the author of the above article is a lecturer. I wonder if they still explain the effects of compound growth to their students?
A key point that the author misses is that what is 'good' is subjective; he also fails to mention that, with DC schemes, there is much more of a need for the individual to understand how pensions work.
You may pay into a defined benefit pension for 50 years (yes, some of us started work at 15 - not something many of today's snowflake generation would seemingly consider!), pay in a hundred thousand or so in your own contributions, get a supposedly generous pension of £8K or so per annum, and die after two years. You don't get your money back.
What's more, you can't dip into a defined benefit pension to fund short term emergencies - like care. Viv has had carers for a year or so, the costs have varied but have at times been as much as £2500 per month. We've been able to fund that by drawdown from our defined contribution pension pot.
If Viv and I had only defined benefit pensions we'd have been dependent upon council funding for her care. This has two disadvantages: 1) it adds to the council adult social care bill and 2) if your care is funded you have much less flexibility about what you can get your carers to do for you - you have to do what Social Services say. For instance, we've had carers helping with rehab, which would not be funded by social services.
I don't know about everyone, but the last thing we want is some busy body from the council coming in and telling us what we can and can't do. Our pensions are our money, we're spending them sensibly (yes, we have enough to see us beyond 80, and have consulted a Financial Advisor) and we want care that suits us. The pensions reforms of recent years have helped us achieve this.
Surely using personal pension funds to fund care is better than the state having to pick up the tab? Is it not just another case of 'the elite' telling us plebs we can't be trusted and don't understand what we're doing (as with Brexit) when in fact we know perfectly well and have things wholly under control.
My own view as to the problem with pensions is that people aren't paying in enough when they're young - you need 40 years at least to build up a pension, and many today don't seem to realise the importance of that. I learnt it at University - oddly enough, the same university at which the author of the above article is a lecturer. I wonder if they still explain the effects of compound growth to their students?
Thursday, 15 March 2018
Would you eat in a restaurant where only half of the staff wash their hands?
A few months ago, in the late autumn, I took Viv to Bedford Hospital for an appointment. There was a big poster near the canteen charting how many staff had had a flu jab: it was about half of the total. Beneath it was a slogan encouraging staff to have a free jab.
'I don't understand', I remember saying to Viv, 'why aren't all staff required to have a flu jab? Every year the NHS complains about being busy, partly because of flu; if staff aren't having a jab, they could be passing it on! It's crazy!' We'd already had ours, because of her condition Viv gets a free one, as do I as her carer.
Viv's now in Addenbrooke's, it's March, and there are similar posters up around the wards and corridors, although not quite so visible as the one at Bedford; they became a little more relevant yesterday when her bed bay had to be subject to 'barrier nursing' because one of the patients is suspected to have flu. So, all staff and visitors have to put on aprons, masks and gloves before entering, and take them off when leaving. This slows down the entry and exit of staff from the area and, yes, does impact the quality of care.
I accept that you can't always prevent infection outbreaks in hospitals, but they could take 'reasonable precautions' to prevent them. It's like restaurant staff washing their hands, surely - a precaution that the employer can require staff to take to ensure that all those (employees, customers, patients) for whom he has a duty of care are indeed exposed to as little risk as possible. Indeed, shouldn't the hospital require all on site (visitors as well as staff) to have had a flu jab?
Perhaps someone claims 'human rights' or something as an excuse for no such rules being in place. I don't know about you, if I found out a restaurant owner respected his staff's right to not wash their hands, I'd boycott the place.
Ah, but we don't have the choice with hospitals, do we....?
'I don't understand', I remember saying to Viv, 'why aren't all staff required to have a flu jab? Every year the NHS complains about being busy, partly because of flu; if staff aren't having a jab, they could be passing it on! It's crazy!' We'd already had ours, because of her condition Viv gets a free one, as do I as her carer.
Viv's now in Addenbrooke's, it's March, and there are similar posters up around the wards and corridors, although not quite so visible as the one at Bedford; they became a little more relevant yesterday when her bed bay had to be subject to 'barrier nursing' because one of the patients is suspected to have flu. So, all staff and visitors have to put on aprons, masks and gloves before entering, and take them off when leaving. This slows down the entry and exit of staff from the area and, yes, does impact the quality of care.
I accept that you can't always prevent infection outbreaks in hospitals, but they could take 'reasonable precautions' to prevent them. It's like restaurant staff washing their hands, surely - a precaution that the employer can require staff to take to ensure that all those (employees, customers, patients) for whom he has a duty of care are indeed exposed to as little risk as possible. Indeed, shouldn't the hospital require all on site (visitors as well as staff) to have had a flu jab?
Perhaps someone claims 'human rights' or something as an excuse for no such rules being in place. I don't know about you, if I found out a restaurant owner respected his staff's right to not wash their hands, I'd boycott the place.
Ah, but we don't have the choice with hospitals, do we....?
Tuesday, 13 March 2018
Lasting Power of Attorney pain
Two years ago Viv and I did Lasting Powers of Attorney, both Health and Finance types. When she was hit with a 'mysterious neurological condition' last year I was really glad we'd done it; I can manage her finances without any problems whatsoever. I would recommend everyone set up powers of attorney.
But the Health & Welfare one does not work as well as the Finance LPA. When we had the LPA's approved I sent details to our GP and asked him to ensure that all NHS systems recorded our powers of attorney.
However, NHS IT systems don't talk to each other. Viv's been in four hospitals as an in-patient since, and none of them picked up the PoA that I have for her - which means that, because she's a bit confused, the staff have to get my agreement (on her behalf) to whatever treatment plan they propose.
The effect of this confusion is that patients suffer. Viv and I had been given the impression by some staff that she would be discharged today or tomorrow, but, when I checked with the nurse, I got a story indicating they felt that she needed to be kept at Addenbrookes a few days, and then transferred elsewhere for further rehab. I felt I should have been consulted about this plan, parts of which were really not required, and Viv had her hopes of an early discharge dashed, causing more confusion and certainly not benefiting her health at all.
The staff confirmed they did not know I had Power of Attorney (I am sure I told them when she checked in, although it was at 1.30 in the morning), so had just been discussing Viv's care with her (even though it would have clearly been a pointless exercise).
Why don't NHS systems hook into the Office of the Public Guardian systems to identify who has PoA, or at least pick up details from the GP systems? After all, if you tell your bank something, you expect every branch to have access to that information. Why can't the NHS work in the same way?
In the mean time you have to tell a hospital when you are admitted, and they seem to expect to see a hardcopy (despite the official process being that they should check with the OPG if they want to confirm it is correct).
But the Health & Welfare one does not work as well as the Finance LPA. When we had the LPA's approved I sent details to our GP and asked him to ensure that all NHS systems recorded our powers of attorney.
However, NHS IT systems don't talk to each other. Viv's been in four hospitals as an in-patient since, and none of them picked up the PoA that I have for her - which means that, because she's a bit confused, the staff have to get my agreement (on her behalf) to whatever treatment plan they propose.
The effect of this confusion is that patients suffer. Viv and I had been given the impression by some staff that she would be discharged today or tomorrow, but, when I checked with the nurse, I got a story indicating they felt that she needed to be kept at Addenbrookes a few days, and then transferred elsewhere for further rehab. I felt I should have been consulted about this plan, parts of which were really not required, and Viv had her hopes of an early discharge dashed, causing more confusion and certainly not benefiting her health at all.
The staff confirmed they did not know I had Power of Attorney (I am sure I told them when she checked in, although it was at 1.30 in the morning), so had just been discussing Viv's care with her (even though it would have clearly been a pointless exercise).
Why don't NHS systems hook into the Office of the Public Guardian systems to identify who has PoA, or at least pick up details from the GP systems? After all, if you tell your bank something, you expect every branch to have access to that information. Why can't the NHS work in the same way?
In the mean time you have to tell a hospital when you are admitted, and they seem to expect to see a hardcopy (despite the official process being that they should check with the OPG if they want to confirm it is correct).
Instead of getting the care sector to help, can't we help people help themselves?
With Viv soon to leave hospital my thoughts have returned to some of the challenges we faced a few weeks ago.
We live in a five year old house on a modern estate. So modern it's still being built, in fact. The ground floor of the house is wheelchair friendly - low threshold on the front door, wide interior doors, downstairs loo with washbasin that can be accessed from a wheelchair.
But ... step (or wheel) outside the front door and the development is a shambles! There is a mini Sainsburys 200 yards away, along a road that has (muddy, rutted) grass verges rather than hard pavements, and cobbles are as difficult to cross on a wheelchair as a cattle grid. Other routes to the supermarket are just as difficult - pavements with no ramps where you need to cross or obstructed by parked cars, or muddy verges to cross where a little thought on the part of the developers / council would have resulted in a hard surface. (You don't want to take a wheelchair across mud, because it all goes indoors with the chair ...).
Elsewhere on the estate are steps where a ramp could be provided, eight inch high kerbs on one side of a road opposite a ramp at a road junction, and muddy water draining off a grassed area over a path, the grassed area badly laid with poor drainage.
I am really surprised at the lack of thought put into the design by the council and developers. After all, nearly all of us will live to grow old, and many will need wheelchairs, strollers or zimmer frames. Are all the designers young? Aren't they taught about The Disablity Discrimination legislation (which requires 'reasonable modifications' to suit disabled people)? Don't the council have a step in their planning process to confirm that plans meet DDA guidelines (which nearly all commercial IT system development processes have)?
If we make it easier for people to get around in a wheelchair or using a stroller they will be less likely to need care services or the NHS, surely? Not just because they can stay in their own (wheelchair-friendly downstairs) home for longer, but also because they are less likely to fall when out and about if the roads and footpaths are properly set out.
I have sent an email to the council asking for them to improve the disabled access around the estate where we live. I sent it on 30 January. I have only a an initial 'we have forwarded your query to the appropriate person' reply so far. Oh, yes, this council is one of thpse claiming it is running short of money to fund care services too... shouldn't they be considering the needs of the disabled (or frail, or elderly) within all of their delivery processes, so the individuals concerned can live independently as much as possible, rather than just shouting 'we need more money'?
We live in a five year old house on a modern estate. So modern it's still being built, in fact. The ground floor of the house is wheelchair friendly - low threshold on the front door, wide interior doors, downstairs loo with washbasin that can be accessed from a wheelchair.
But ... step (or wheel) outside the front door and the development is a shambles! There is a mini Sainsburys 200 yards away, along a road that has (muddy, rutted) grass verges rather than hard pavements, and cobbles are as difficult to cross on a wheelchair as a cattle grid. Other routes to the supermarket are just as difficult - pavements with no ramps where you need to cross or obstructed by parked cars, or muddy verges to cross where a little thought on the part of the developers / council would have resulted in a hard surface. (You don't want to take a wheelchair across mud, because it all goes indoors with the chair ...).
Elsewhere on the estate are steps where a ramp could be provided, eight inch high kerbs on one side of a road opposite a ramp at a road junction, and muddy water draining off a grassed area over a path, the grassed area badly laid with poor drainage.
I am really surprised at the lack of thought put into the design by the council and developers. After all, nearly all of us will live to grow old, and many will need wheelchairs, strollers or zimmer frames. Are all the designers young? Aren't they taught about The Disablity Discrimination legislation (which requires 'reasonable modifications' to suit disabled people)? Don't the council have a step in their planning process to confirm that plans meet DDA guidelines (which nearly all commercial IT system development processes have)?
If we make it easier for people to get around in a wheelchair or using a stroller they will be less likely to need care services or the NHS, surely? Not just because they can stay in their own (wheelchair-friendly downstairs) home for longer, but also because they are less likely to fall when out and about if the roads and footpaths are properly set out.
I have sent an email to the council asking for them to improve the disabled access around the estate where we live. I sent it on 30 January. I have only a an initial 'we have forwarded your query to the appropriate person' reply so far. Oh, yes, this council is one of thpse claiming it is running short of money to fund care services too... shouldn't they be considering the needs of the disabled (or frail, or elderly) within all of their delivery processes, so the individuals concerned can live independently as much as possible, rather than just shouting 'we need more money'?
Monday, 12 March 2018
Does anyone take any notice of visiting rules?
It's Viv's 14th day in hospital; the good news is she had her operation yesterday and is now recovering on the ward.
I would like that recovery to be as swift and comfortable as possible so come the 16th or so she's out; no doubt everyone feels that way when a loved one is an in patient.
So, when visiting hospitals, why do some families take risks with patient's health (that of both the person they are visiting and other patients)?
At the moment Addenbrooke's have big signs up: no more than two visitors per patient. (In smaller print it clarifies that this means just that; if the two leave the ward, no other should arrive). The reason for this is to cut down on the risks posed by flu and norovirus, both of which are present in their wards at the moment. The more people that visit, the greater the risk of more germs being brought in, and of people taking the germs away into the wider community.
On three occasions in the last week these rules have been broken by families visiting patients in Viv's bay; twice there were three visitors, and once four, for different patients. This puts the ward staff in a difficult position - they can't really order people out; it's surely down to the families to respect the request not to bring large groups of visitors into the hospital.
If one of these large groups does cop a dose of norovirus, where will they be heading? Yes, off to the NHS (GP maybe). It's a free service and we should respect that resources are constrained; when asked to do something we, the visitors, should b well do it.
Viv's only had the one visitor - me. The ward isn't a social club, she doesn't need more.
Friday, 9 March 2018
The envy of the world !
Politicians of all parties know that an awful lot of people work in the health service. Those people vote. So the politicians tell them how wonderful they are... the phrase that comes to mind is 'The NHS is the envy of the world'. (The 2012 olympics opening ceremony comes to mind too, what the heck has the NHS got to do with the olympics, apart from providing Bradley Wiggins medication perhaps...?)
**
The fact is that the NHS isn't that good. Viv's been in hospital since 27th Feb, everyone has known what's needed since I pushed her into A&E that day. The A&E nurse summed it up; 'she needs a shunt, doesn't she?'.
**
It took the Lister six days to get her MRI scanned. The day after Addenbrooke's agreed she should be there; she did her moonlight flit on Tuesday 6th. Since then she had been 'NBM' (nil by mouth) because they were all expecting her to have an general anaesthetic for surgery pdq. She was on the list for an op yesterday; that didn't happen. She was the top of the list this morning; that didn't happen. She was then down for 6pm today. Guess what? That's right, that didn't happen. In all that time she hadn't eaten a thing (and her fluids had only been maintained by drips).
**
Yes, emergencies happen. But (ex-project manager speaking) slippage like the above seems to indicate someone really doesn't have a plan.
**
What's worse, she's been off her legs virtually all this time (I did help her with a little physio at the Lister). Muscles atrophy during periods of bed rest to the point that tehy'll take four times as long to build up again as the length of the bed rest. We're now looking at six weeks physio just to get Viv back to where she was physically the Tuesday before last. If she's not going to have surgery, can't they do something to keep her muscles active?
**
This apparent lack of planning, lack of consideration for the whole person and their family, and lengthy, unpredictable periods without meals wouldn't happen, dare I say, if I was currently working in one of the roles I once had for US companies and happened to be based in the US. Yes, I'd get health insurance; that would pay for private healthcare, which, right now, would be much better than what Viv is suffering. So, envy of the world? You've got to be joking. I reckon most of the politicians (whatever their party) who say it is have BUPA cover anyway.
**
A junior doctor 'was asked' to apologise to us about these delays. She couldn't say when Viv would get surgery; so, meanwhile, Viv's in an NHS bed that, we're told, there aren't enough of. I'm really hoping it's done tomorrow, I've had enough.
**
The fact is that the NHS isn't that good. Viv's been in hospital since 27th Feb, everyone has known what's needed since I pushed her into A&E that day. The A&E nurse summed it up; 'she needs a shunt, doesn't she?'.
**
It took the Lister six days to get her MRI scanned. The day after Addenbrooke's agreed she should be there; she did her moonlight flit on Tuesday 6th. Since then she had been 'NBM' (nil by mouth) because they were all expecting her to have an general anaesthetic for surgery pdq. She was on the list for an op yesterday; that didn't happen. She was the top of the list this morning; that didn't happen. She was then down for 6pm today. Guess what? That's right, that didn't happen. In all that time she hadn't eaten a thing (and her fluids had only been maintained by drips).
**
Yes, emergencies happen. But (ex-project manager speaking) slippage like the above seems to indicate someone really doesn't have a plan.
**
What's worse, she's been off her legs virtually all this time (I did help her with a little physio at the Lister). Muscles atrophy during periods of bed rest to the point that tehy'll take four times as long to build up again as the length of the bed rest. We're now looking at six weeks physio just to get Viv back to where she was physically the Tuesday before last. If she's not going to have surgery, can't they do something to keep her muscles active?
**
This apparent lack of planning, lack of consideration for the whole person and their family, and lengthy, unpredictable periods without meals wouldn't happen, dare I say, if I was currently working in one of the roles I once had for US companies and happened to be based in the US. Yes, I'd get health insurance; that would pay for private healthcare, which, right now, would be much better than what Viv is suffering. So, envy of the world? You've got to be joking. I reckon most of the politicians (whatever their party) who say it is have BUPA cover anyway.
**
A junior doctor 'was asked' to apologise to us about these delays. She couldn't say when Viv would get surgery; so, meanwhile, Viv's in an NHS bed that, we're told, there aren't enough of. I'm really hoping it's done tomorrow, I've had enough.
Wednesday, 7 March 2018
Patient Transport - Moonlight Flit to Addenbrooke's
I fear all is still not well with a business in East Anglia that is, it would seem, no more complex than a taxi service. NHS Patients are suffering as a result.
Viv was still in The Lister Hospital, Stevenage yesterday, with a view to being transferred to Addenbrooke's for neurosurgical treatment.
At 4.50 Addenbrooke's phoned The Lister saying a bed was available for her. The Lister ward staff asked me to help get Viv ready for transport which could arrive at any time. We got her dressed and into her wheelchair, everything was packed up and ready to go by 5.30.
The transport didn't arrive until 11.30. It was 1.30 by the time Viv was settled in her bed at Addenbrooke's. Staff at the Lister had been phoning the transport control in Norwich or Chelmsford (not exactly local to Hertfordshire!) every hour, each time being told that transport would be with them soon - half an hour, or 'within the hour'. I called as well at about 8.30, and was told that the absolute worst-case was 10pm.
The phone lines for transport control went unanswered after 10pm. We had no way of knowing whether the ambulance was on it's way, or how long it would be.
I did mention the delay to the ambulance men when they arrived and they said that they are given ridiculous times for journeys by their controllers - 20 minutes for Stevenage to Cambridge, for instance. They also said that there hadn't been anything unusual happening earlier in the day, they did not understand why control hadn't despatched a crew for this job much earlier in the evening. Few minicab firms that are that badly organised would be in business for long!
The ward staff at The Lister told me that this experience is far from unusual.
It isn't good for sick patients to be travelling around the country in the middle of the night - they need their sleep! It would seem that whoever is running the Patient Transport Service (which is distinct from the ambulance service) has no basic understanding of the needs of sick people or of distances and travel times between NHS locations in our region (even though these are readily available on, for instance, Google Maps)!
I accept that delays happen, but it would have been better for the controllers to tell the Lister ward staff from the outset that transport would not be with them until much later - that way, we could have got Viv resting, rather than all dressed up and ready to go. To me it seemed that the controllers hadn't a clue.
This isn't a case where more money is needed, just better organisation - travel times between hospitals must surely be fairly standard!
Why isn't patient transport better managed - why can't they just use the techniques that taxi and courier companies use ? Yet again, something has been 'reorganised' without the poor bloody patient being considered!
Why isn't patient transport better managed - why can't they just use the techniques that taxi and courier companies use ? Yet again, something has been 'reorganised' without the poor bloody patient being considered!
Patience, Patients!
Viv has now left the ward at The Lister. In a way that's a bit of a shame; there were three other ladies in her bay, and they'd started to strike up a bit of camaraderie. One of them lives in Harmer Green Lane, Welwyn, where Viv lived when she was very young; this lady said something to me that I was rather surprised by, and very flattered.
She said how patient I am coping with Viv, with her (hopefully temporary) disabilities.
I found this surprising because I don't always feel very patient when I am doing caring things; I'm often feeling very frustrated, wondering 'why us?', and I feel as if I'm often shouting at her to do things the way the physio or other specialist has told us. Indeed, at times I've been worried I'm going to harm her; perhaps my awareness of that risk is a sign that I am in some sort of control.
It is remarkable how my caring role has evolved over the last twelve months: a year ago I had to contemplate looking after her (apparently for ever) with four daily visits from carers. At first I 2as frightened by the responsibility: my fifty plus years of experience did not encompass managing incontinence, or helping a frail person walk. I used the carer visits to learn how to do what had to be done (with help from the (private) physio); we reduced the number of care visits until doing away with them altogether some eight months after Viv came out of hospital. That was the way we wanted to do it - it was not suggested by the carers or social services or anyone we wanted our privacy, and perhaps as my confidence grew I became more expert, and more patient, than I realised.
I'm tempted to wonder why officialdom did not encourage me to learn the necessary skills, since there is such an apparent crisis in the care world: shouldn't the various authorities be encouraging people to learn how to support themselves, even with whatever disability they have developed, to free up finite resources for those who really need more help? Is it too easy for people whose care is funded by the local authority to just take the carers for granted and not try to consider ways they might be self sufficient?
There will always be people who do need a lot of support for a long time, but our experience is that those that can manage on their own don't receive any encouragement or incentive to do so. Perhaps doing away with that £23K savings limit for the first six months (or raising it for just that period) might be an incentive?
Is suspect that many carers might prefer to have a 'teaching' role in their customers' lives rather than just a 'service provision' one, too...?
Also, shouldn't management of the elderly/frail/disabled be on the national curriculum - so that everyone knows the basics, things like how to help someone stand from a chair, or change a pad while their lying on a bed? If everyone had a basic knowledge of these skills we (as a society) may be less tempted to shut our elderly and frail away in homes, or demand the state send round carers to wipe their bums.
She said how patient I am coping with Viv, with her (hopefully temporary) disabilities.
I found this surprising because I don't always feel very patient when I am doing caring things; I'm often feeling very frustrated, wondering 'why us?', and I feel as if I'm often shouting at her to do things the way the physio or other specialist has told us. Indeed, at times I've been worried I'm going to harm her; perhaps my awareness of that risk is a sign that I am in some sort of control.
It is remarkable how my caring role has evolved over the last twelve months: a year ago I had to contemplate looking after her (apparently for ever) with four daily visits from carers. At first I 2as frightened by the responsibility: my fifty plus years of experience did not encompass managing incontinence, or helping a frail person walk. I used the carer visits to learn how to do what had to be done (with help from the (private) physio); we reduced the number of care visits until doing away with them altogether some eight months after Viv came out of hospital. That was the way we wanted to do it - it was not suggested by the carers or social services or anyone we wanted our privacy, and perhaps as my confidence grew I became more expert, and more patient, than I realised.
I'm tempted to wonder why officialdom did not encourage me to learn the necessary skills, since there is such an apparent crisis in the care world: shouldn't the various authorities be encouraging people to learn how to support themselves, even with whatever disability they have developed, to free up finite resources for those who really need more help? Is it too easy for people whose care is funded by the local authority to just take the carers for granted and not try to consider ways they might be self sufficient?
There will always be people who do need a lot of support for a long time, but our experience is that those that can manage on their own don't receive any encouragement or incentive to do so. Perhaps doing away with that £23K savings limit for the first six months (or raising it for just that period) might be an incentive?
Is suspect that many carers might prefer to have a 'teaching' role in their customers' lives rather than just a 'service provision' one, too...?
Also, shouldn't management of the elderly/frail/disabled be on the national curriculum - so that everyone knows the basics, things like how to help someone stand from a chair, or change a pad while their lying on a bed? If everyone had a basic knowledge of these skills we (as a society) may be less tempted to shut our elderly and frail away in homes, or demand the state send round carers to wipe their bums.
Tuesday, 6 March 2018
Matron !
I went to a boarding school and the word 'matron' brings back memories of being 'inspected' three times a week, to see that I was washing properly and had no obvious contagious skin condition. I also can't help thinking of Kenneth Williams making amorous advances on Hattie Jacques.
However, in a hospital environment someone is desperately needed to be in charge of ward activities, from my experience. By that I mean someone taking ownership of and prioritising everything to do with the patients' progress through 'the system': ward staff now seem to have defined roles and are either too busy, or not experienced enough, to push through the things that matter as quickly as the consultants, managers and patients would like.
Viv's been on a ward at The Lister now for a week. A transfer to Addenbrooke's was first proposed on the second day of her stay. By yesterday the teams at Cambridge and Stevenage were at least talking. But, in this age when bed blocking is considered such a problem, the Lister people seem to have no clarity on what the dependencies are at the Addenbrookes end, so have no clear vision of how much longer Viv is likely to be with them, and is 'blocking' a bed. (I have suggested that I could care for her at home while we wait for Addenbrooke's, thus freeing said bed, but that would take her out of 'the system' and therefore would not be helpful.) The ward doctors and nurses are very much many like new graduates I have encountered in business - enthusiastic, knowledegable and hardworking. Where they need support is in prioritisation, and management of 'pinch points' involving external teams (transport, other hospitals, etc). In business that support would come from an experienced manager; in the NHS the consultants help a little, but what's needed is someone closer to the ward with many years experience and contacts, who's not afraid to rattle a few cages sometimes.
Matron would also chase some of the maintenance issues - in Viv's ward the only wheelchair accessible loo was out of use for three days due to a light tube going (no, the hospital doesn't use LED lights!). There was an enormous hoo hah a year or so ago when a paralympian found the disabled loo on a train out of action, but no one cares enough about poor bloody hospital patients to get simple maintenance jobs on the ward done promptly. A ward matron would put the fear of god up the maintenance men and the job would be done in no time.
There was another maintenance issue - really bad draughts around the windows (solved with the aid of some sellotape, bought in the hospital shop) which nurses were aware of, but which hadn't been resolved, perhaps it was just too difficult to get through the bureaucracy; again, an experienced matron would make things happen. (Yes, all that was needed was some tape over the poorly fixed insulation strips...)
The Matron would support both nursing and medical staff on the ward (at present, doctors spend much of their time sorting out referrals and arranging transfers - is that what they spend all that time at medical school for?), identifying key activities and helping to make them happen to speed people through the system quicker. It would probably be a role filled by someone with 20 or so years of experience - not necessarily all nursing or medical (project management skills will be needed too, something very scarce in the NHS).
It's simple to say the NHS needs more money, but when money has been thrown at the problem in the past working practices and job roles stay the same and the unions (including the BMA) just take as much of it as they can. What's needed is a wholesale change of attitudes and job roles.
However, in a hospital environment someone is desperately needed to be in charge of ward activities, from my experience. By that I mean someone taking ownership of and prioritising everything to do with the patients' progress through 'the system': ward staff now seem to have defined roles and are either too busy, or not experienced enough, to push through the things that matter as quickly as the consultants, managers and patients would like.
Viv's been on a ward at The Lister now for a week. A transfer to Addenbrooke's was first proposed on the second day of her stay. By yesterday the teams at Cambridge and Stevenage were at least talking. But, in this age when bed blocking is considered such a problem, the Lister people seem to have no clarity on what the dependencies are at the Addenbrookes end, so have no clear vision of how much longer Viv is likely to be with them, and is 'blocking' a bed. (I have suggested that I could care for her at home while we wait for Addenbrooke's, thus freeing said bed, but that would take her out of 'the system' and therefore would not be helpful.) The ward doctors and nurses are very much many like new graduates I have encountered in business - enthusiastic, knowledegable and hardworking. Where they need support is in prioritisation, and management of 'pinch points' involving external teams (transport, other hospitals, etc). In business that support would come from an experienced manager; in the NHS the consultants help a little, but what's needed is someone closer to the ward with many years experience and contacts, who's not afraid to rattle a few cages sometimes.
Matron would also chase some of the maintenance issues - in Viv's ward the only wheelchair accessible loo was out of use for three days due to a light tube going (no, the hospital doesn't use LED lights!). There was an enormous hoo hah a year or so ago when a paralympian found the disabled loo on a train out of action, but no one cares enough about poor bloody hospital patients to get simple maintenance jobs on the ward done promptly. A ward matron would put the fear of god up the maintenance men and the job would be done in no time.
There was another maintenance issue - really bad draughts around the windows (solved with the aid of some sellotape, bought in the hospital shop) which nurses were aware of, but which hadn't been resolved, perhaps it was just too difficult to get through the bureaucracy; again, an experienced matron would make things happen. (Yes, all that was needed was some tape over the poorly fixed insulation strips...)
The Matron would support both nursing and medical staff on the ward (at present, doctors spend much of their time sorting out referrals and arranging transfers - is that what they spend all that time at medical school for?), identifying key activities and helping to make them happen to speed people through the system quicker. It would probably be a role filled by someone with 20 or so years of experience - not necessarily all nursing or medical (project management skills will be needed too, something very scarce in the NHS).
It's simple to say the NHS needs more money, but when money has been thrown at the problem in the past working practices and job roles stay the same and the unions (including the BMA) just take as much of it as they can. What's needed is a wholesale change of attitudes and job roles.
Saturday, 3 March 2018
The NHS is one organisation !
In my working life I have often been involved in integration projects - that is, bringing together teams from former competitors to form a single team in a new organisation. (One case that springs to mind is the shotgun marriage of Lloyds Bank and HBOS.)
The teams in the 'unmerged' organisations have evolved to be rivals, and do not trust each other. Moreover, they are trained to control costs in 'their' organisation. When they belong to the amalgamated organisation these behaviours can cause problems.
I see the same thing in the NHS: individual doctors and nurses do things the way favoured at 'their' hospital. Pride in their work is a good thing, but there comes a point when this needs to be challenged.
Viv is currently in the Lister, needing neurosurgical work. The Lister doesn't have neurosurgery facilities. She is also 'on the books' of the Addenbrookes neurosurgery team, as an outpatient. The ward doctors at the Lister are trying to get her transferred to Addenbrookes, but the neurosurgical registrar there has rejected this (despite the consultant there having said she may need the surgery that the consultant at the Lister says she needs). The impression I have been given is that this rejection is an almost instinctive reaction, based on a misjudgement of the capabilities of the team at the Lister. There's been no direct contact between the consultants.
Meanwhile Viv - the patient - seems to have been forgotten, her condition is certainly not getting any better.
This mess may perhaps be due to the way each hospital is funded ( 'I'm not paying for your patients operations'-type bickering), if it is in needs to be resolved - because not every hospital provides every type of treatment.
I believe that the teams in the NHS need to work as one; they need to be able to see each other's scans (if you go into any branch of a bank you can enquire about your account; why can a consultant at one hospital not see scans taken at another without all sorts of hoops being jumped through?), they need to share responsibility, and those best placed to help a patient should willing take ownership of the necessary activities.
The teams in the 'unmerged' organisations have evolved to be rivals, and do not trust each other. Moreover, they are trained to control costs in 'their' organisation. When they belong to the amalgamated organisation these behaviours can cause problems.
I see the same thing in the NHS: individual doctors and nurses do things the way favoured at 'their' hospital. Pride in their work is a good thing, but there comes a point when this needs to be challenged.
Viv is currently in the Lister, needing neurosurgical work. The Lister doesn't have neurosurgery facilities. She is also 'on the books' of the Addenbrookes neurosurgery team, as an outpatient. The ward doctors at the Lister are trying to get her transferred to Addenbrookes, but the neurosurgical registrar there has rejected this (despite the consultant there having said she may need the surgery that the consultant at the Lister says she needs). The impression I have been given is that this rejection is an almost instinctive reaction, based on a misjudgement of the capabilities of the team at the Lister. There's been no direct contact between the consultants.
Meanwhile Viv - the patient - seems to have been forgotten, her condition is certainly not getting any better.
This mess may perhaps be due to the way each hospital is funded ( 'I'm not paying for your patients operations'-type bickering), if it is in needs to be resolved - because not every hospital provides every type of treatment.
I believe that the teams in the NHS need to work as one; they need to be able to see each other's scans (if you go into any branch of a bank you can enquire about your account; why can a consultant at one hospital not see scans taken at another without all sorts of hoops being jumped through?), they need to share responsibility, and those best placed to help a patient should willing take ownership of the necessary activities.
Friday, 2 March 2018
Units, units, units
How many times do we hear or read of the medical profession telling us we're drinking too much, and (poor, ignorant things) we don't know what a unit is, so our doctors never trust us when we tell them how many units we consume?
It would help if messages from the NHS were consistent (and accurate).
One form from Bedford hospital included the following text:
This displays complete ignorance of what a unit of alcohol is, and of the relative strength of drinks: a pub 'standard' wine glass is usually 175 ml (although bar staff are encouraged to get punters to 'go large' to 250ml), and most wine sold in supermarkets and pubs is around 11.5% alcohol these days. My primary school arithmetic gives
0.175 x 11.5 = 2.0125 and 0.250 x 11.5 = 2.875
So the figure on this NHS form for the number of units in a glass of wine is only half what it should be!
(That for beer is better; a pint of 4% beer is just over 2 units - but many beers are stronger.)
Feeling that the figure for wine could be read by some as indicating that they are ok to drink 14 pub glasses of wine a week (the 14 unit recommendation), when in fact this would be close to 30 units, I contacted Bedford Hospital and pointed out how this form could confuse people.
I received the following reply:
It may well be that, in their particular case, the exact number of units is not entirely important - but shouldn't the NHS - which many of us believe to be one organisation - speak with one voice on health matters, and be accurate?
It would help if messages from the NHS were consistent (and accurate).
One form from Bedford hospital included the following text:
This displays complete ignorance of what a unit of alcohol is, and of the relative strength of drinks: a pub 'standard' wine glass is usually 175 ml (although bar staff are encouraged to get punters to 'go large' to 250ml), and most wine sold in supermarkets and pubs is around 11.5% alcohol these days. My primary school arithmetic gives
0.175 x 11.5 = 2.0125 and 0.250 x 11.5 = 2.875
So the figure on this NHS form for the number of units in a glass of wine is only half what it should be!
(That for beer is better; a pint of 4% beer is just over 2 units - but many beers are stronger.)
Feeling that the figure for wine could be read by some as indicating that they are ok to drink 14 pub glasses of wine a week (the 14 unit recommendation), when in fact this would be close to 30 units, I contacted Bedford Hospital and pointed out how this form could confuse people.
I received the following reply:
It may well be that, in their particular case, the exact number of units is not entirely important - but shouldn't the NHS - which many of us believe to be one organisation - speak with one voice on health matters, and be accurate?
Why not an oystercard for hospital car parking?
I'm currently paying £8.80 per day for 8 hours parking at the Lister. If I just left my car there for a week the bill would be £22.00; I haven't bought a weekly ticket because Viv is going to be transferred to (probably) Addenbrookes, so we have never expected her to be at the Lister a week (although, at the rate we're going, she may well be.)
Consequently I'm going to end up paying far more than I should for parking.
I thought of how Oyster cards work in London; there is a daily cap, and once you have been charged that amount for journeys within the given zones any more journeys in those zones on that day are effectively free.
Why don't hospitals use a smart card for parking (or even contactless cards, as per the tube) and limit the amount one card can be charged in one week?
If it was done properly, all hospitals would work on the same system.. but that would involve the NHS being just one organisation, rather than lots of organisations all funded by the Dept of Health, and it might involve some efficiencies. That would never do!
Consequently I'm going to end up paying far more than I should for parking.
I thought of how Oyster cards work in London; there is a daily cap, and once you have been charged that amount for journeys within the given zones any more journeys in those zones on that day are effectively free.
Why don't hospitals use a smart card for parking (or even contactless cards, as per the tube) and limit the amount one card can be charged in one week?
If it was done properly, all hospitals would work on the same system.. but that would involve the NHS being just one organisation, rather than lots of organisations all funded by the Dept of Health, and it might involve some efficiencies. That would never do!
Off beat discussion with a physio ...
An NHS physio phoned me yesterday, to discuss Viv. He's obviously been engaged because of her stay in the Lister. It ws a long call, perhaps fifteen minutes.
The conversation seemed somewhat surreal to me: questions about carers, the type of house we live in, her walking and eating capabilites, etc. In fact it ws a repeat of a discussion I had with a physio at Bedford hospital a year ago.
Being 'in the care system', all of the information should be available to anyone needing it, surely? Didn't the physio at Bedford hospital enter it into a computer system so that carers, social workers and others can understand her needs?
Obviously not. Why do something just once when you can pay many people to do it time and again (and also insult the intelligence of the relative / carer by asking questions they've already answered before) ?...
The conversation seemed somewhat surreal to me: questions about carers, the type of house we live in, her walking and eating capabilites, etc. In fact it ws a repeat of a discussion I had with a physio at Bedford hospital a year ago.
Being 'in the care system', all of the information should be available to anyone needing it, surely? Didn't the physio at Bedford hospital enter it into a computer system so that carers, social workers and others can understand her needs?
Obviously not. Why do something just once when you can pay many people to do it time and again (and also insult the intelligence of the relative / carer by asking questions they've already answered before) ?...
Screen lock in A and E
I worked in IT for many years, and for at least the last twenty the rule has been 'lock your screen when away from your desk' - to stop anyone from seeing data they weren't meant to.
I was somewhat astonished by the measures taken in A and E at the Lister, on a laptop used by nurses in a public area, and often left unattended.
It was used - among other things - to track progress of patients through A and E, and a nurse used it when I enquired about progress on finding Viv a bed on a ward (at which point she asked me to stand the other side of the screen, because there was confidential data on other patients visible). I did wonder why the screen wasn't positioned better, so that visitors wouldn't see the data - or why it didn't have a polarised filter (about £25 on Amazon) to prevent unwanted viewing.
When the laptop was left unattended it was left unlocked, with a sheet of A4 paper over it, fixed by a length of tape. That's all. I was tempted to do a quiock ctrl + alt + del on the keyboard and see if anyone knew the password!
I was somewhat astonished by the measures taken in A and E at the Lister, on a laptop used by nurses in a public area, and often left unattended.
It was used - among other things - to track progress of patients through A and E, and a nurse used it when I enquired about progress on finding Viv a bed on a ward (at which point she asked me to stand the other side of the screen, because there was confidential data on other patients visible). I did wonder why the screen wasn't positioned better, so that visitors wouldn't see the data - or why it didn't have a polarised filter (about £25 on Amazon) to prevent unwanted viewing.
When the laptop was left unattended it was left unlocked, with a sheet of A4 paper over it, fixed by a length of tape. That's all. I was tempted to do a quiock ctrl + alt + del on the keyboard and see if anyone knew the password!
When in doubt, delay .....
Viv was in A and E at the Lister on Tuesday; among the things the doctors knew would be needed was an MRI scan.
That couldn't be done until she was admitted.
The form was filled in on Wednesday.
The radiologist rejected it on Thursday ... because Viv had had an eye op in the past.
That's fine and in line with their procedures, no doubt.
But the radiologist could have checked further before rejecting it: Viv's eye op was many years ago (as a child) and has had MRI scans on her head before: the radiologist could have checked their own records to see that Viv has had one annually at the Lister since 2012! They could also have checked with Neurology, the ward, or - for that matter - with me.
The consequence of the delay to the scan is delay to referral for the operation, more time occupying an NHS bed and increased risk of injury due to not having the op.
At a time when NHS bed occupancy is at crisis point why aren't NHS processes designed to speed up the flow of patients through the system?
That couldn't be done until she was admitted.
The form was filled in on Wednesday.
The radiologist rejected it on Thursday ... because Viv had had an eye op in the past.
That's fine and in line with their procedures, no doubt.
But the radiologist could have checked further before rejecting it: Viv's eye op was many years ago (as a child) and has had MRI scans on her head before: the radiologist could have checked their own records to see that Viv has had one annually at the Lister since 2012! They could also have checked with Neurology, the ward, or - for that matter - with me.
The consequence of the delay to the scan is delay to referral for the operation, more time occupying an NHS bed and increased risk of injury due to not having the op.
At a time when NHS bed occupancy is at crisis point why aren't NHS processes designed to speed up the flow of patients through the system?
Subscribe to:
Posts (Atom)