As the Scots go to the polling stations today to make the most important UK constitutional decision for centuries, I shall stay right out of the frenzy.
However, i'm not sure if I came up with the following idea myself or am plagiarising it unintentionally, but it seems to me, that in fact, we should just insist on independence for Westminster.
Why on earth don't we just cut them adrift to govern no-one but themselves? It's what we all seem to want after all. Scotland insists they have nothing against the English, Welsh and Irish, but everyone agrees that governance from Westminster is bad for them. Scotland, Wales, the North, Cornwall - even the Isle of Wight.
Westminster appears to be able to perform the impressive trick of being unable to govern effectively or fairly for anyone at all. Except perhaps the metropolitan elite of Chelsea or Kensington.
Can we not just leave them to it, devolve greed, incompetence and feudal servitude to them, so that the rest of us can get on with deciding our own futures?
Thursday, 18 September 2014
Is ESA Really Harder to Claim than IB?
Last week, the excellent John Pring published an article that seemed to show that the new Employment and Support Allowance (ESA or "sickness benefit") was twice as easy to claim as the benefit it replaced (Incapacity Benefit or IB)
Under IB, just 32% of claims resulted in an award of benefit, yet latest figures show that 73% of clams result in an award of ESA.
Firstly, clearly ESA is not easier to claim than IB. firstly, the criteria are much stricter than the old IB criteria. Also, if it were easier to claim, the overall number of claims would have risen steadily since its introduction. When the benefit was introduced, around 2.5 million people claimed IB. Today, around 2.5 million receive support. So for all the pain and misery of the new Work Capability Assessments (WCAs) nothing at all has changed.
So what is happening? I've read several theories, but I don't think they've explained such an apparently dramatic rise.
We do know that Atos, the French IT company responsible for carrying out the assessments on behalf of the DWP have been struggling with increasing backlogs since the start. They have been forced to increase the number of assessments they do every month. At first, it was just 25,000 per month, at it's highest, Atos were doing around 130,000 per month. As the rate they were expected to assess people increased, backlogs increased with them until today, a whopping 700,000 are stuck in the "assessment phase". Once Atos walked away from the WCA contract (possibly last September, but only confirmed publicly this May) the assessment rate has dropped dramatically increasing backlogs still further.
The only way you can be found fit for work is through a face to face assessment. Only a fully trained doctor can decide a claimant qualifies on paper alone. This means that the evidence on a claimants form and the corresponding evidence from their own Drs makes the decision so clear cut that a decision can be made without the need for a face to face assessment. (WCA) Perhaps someone with cerebral palsy who cannot mobilise, feed or speak independently or someone with terminal cancer Of around a thousand Atos HCPs (Health Care Professionals) very few are actually fully trained doctors. Most are nurses, physiotherapists or other healthcare professionals.
Thanks to HCPs who have been prepared to whistle-blow to me in private, I've known for over a year that Atos were attempting to clear backlogs by getting the trained Drs to do as many paper-assessments as they could. They were asked to work weekends and overtime and all Drs were pretty much flat out doing as many as they possibly could. A doctor can then decide that the claimant qualifies for either the long term Support Group or that they will be able to work again at some point in the future, hence qualifying for the Work Related Activity Group (WRAG) Remember, however obvious it may seem on paper that a claimant will not qualify, they cannot be found "fit for work" without a face to face assessment (WCA)
So for a long time, most decisions made have been those clear cut enough to qualify for ESA on paper evidence alone. Most of the "fit for work" decisions are stuck almost indefinitely in limbo.
If my theory is right and we ever get another provider willing to take on the poisoned chalice of ESA, (Which is looking increasingly unlikely by the day as time drags on) we will see a dramatic fall in the overall % of successful claims. However long that lasts, that won't be a clear indication of how many people get ESA compared to IB either. For a long time, there will be a disproportionate number of "Fit for Work" decisions as all the clear cut qualifying awards have already been weeded out. I wouldn't be at all surprised to see the current 73% success rate plummet to as low as 15-30%
So the real questions are when will the DWP find a new contractor and what are they doing about clearing the backlogs? Around 30,000 people will be compensated for unacceptable delays of up to a few months to their passport applications, when will the DWP compensate the 700,000 people facing unacceptable delays of up to a year to their very subsistence?
Under IB, just 32% of claims resulted in an award of benefit, yet latest figures show that 73% of clams result in an award of ESA.
Firstly, clearly ESA is not easier to claim than IB. firstly, the criteria are much stricter than the old IB criteria. Also, if it were easier to claim, the overall number of claims would have risen steadily since its introduction. When the benefit was introduced, around 2.5 million people claimed IB. Today, around 2.5 million receive support. So for all the pain and misery of the new Work Capability Assessments (WCAs) nothing at all has changed.
So what is happening? I've read several theories, but I don't think they've explained such an apparently dramatic rise.
We do know that Atos, the French IT company responsible for carrying out the assessments on behalf of the DWP have been struggling with increasing backlogs since the start. They have been forced to increase the number of assessments they do every month. At first, it was just 25,000 per month, at it's highest, Atos were doing around 130,000 per month. As the rate they were expected to assess people increased, backlogs increased with them until today, a whopping 700,000 are stuck in the "assessment phase". Once Atos walked away from the WCA contract (possibly last September, but only confirmed publicly this May) the assessment rate has dropped dramatically increasing backlogs still further.
The only way you can be found fit for work is through a face to face assessment. Only a fully trained doctor can decide a claimant qualifies on paper alone. This means that the evidence on a claimants form and the corresponding evidence from their own Drs makes the decision so clear cut that a decision can be made without the need for a face to face assessment. (WCA) Perhaps someone with cerebral palsy who cannot mobilise, feed or speak independently or someone with terminal cancer Of around a thousand Atos HCPs (Health Care Professionals) very few are actually fully trained doctors. Most are nurses, physiotherapists or other healthcare professionals.
Thanks to HCPs who have been prepared to whistle-blow to me in private, I've known for over a year that Atos were attempting to clear backlogs by getting the trained Drs to do as many paper-assessments as they could. They were asked to work weekends and overtime and all Drs were pretty much flat out doing as many as they possibly could. A doctor can then decide that the claimant qualifies for either the long term Support Group or that they will be able to work again at some point in the future, hence qualifying for the Work Related Activity Group (WRAG) Remember, however obvious it may seem on paper that a claimant will not qualify, they cannot be found "fit for work" without a face to face assessment (WCA)
So for a long time, most decisions made have been those clear cut enough to qualify for ESA on paper evidence alone. Most of the "fit for work" decisions are stuck almost indefinitely in limbo.
If my theory is right and we ever get another provider willing to take on the poisoned chalice of ESA, (Which is looking increasingly unlikely by the day as time drags on) we will see a dramatic fall in the overall % of successful claims. However long that lasts, that won't be a clear indication of how many people get ESA compared to IB either. For a long time, there will be a disproportionate number of "Fit for Work" decisions as all the clear cut qualifying awards have already been weeded out. I wouldn't be at all surprised to see the current 73% success rate plummet to as low as 15-30%
So the real questions are when will the DWP find a new contractor and what are they doing about clearing the backlogs? Around 30,000 people will be compensated for unacceptable delays of up to a few months to their passport applications, when will the DWP compensate the 700,000 people facing unacceptable delays of up to a year to their very subsistence?
Sunday, 14 September 2014
How not to be a Doctor
When I read this article earlier in the week, I found it hard to believe that a doctor, in the UK in 2014 had actually put the words to paper. More so that anyone had given him the space to express them in public. First I checked that it wasn't an old article from the 40s or 50s. Then I checked it wasn't a spoof site. http://www.cps.org.uk/blog/q/date/2014/09/12/illness-as-a-career-choice/
But no. The author claims to be a currently practicing physician. It's hard to believe, in fact, that he isn't Iain Duncan-Smith in disguise.
Let's start with
He goes on to tell us that
Sadly, our doctor friend can only see the world through a medical prism, so none of those things matter. What's more, given his income, lifestyle and opportunities as a doctor, he is much more likely to identify with the first man than the second.
Now, I wouldn't want you to think that the good doctor is basing his judgements on anecdote alone. No, he refers to
The next section of the article aims to make the case that we should return to a system in which the patient not only has no say in outcomes, but is actually not kept informed in any way. If a doctor has to show a patient the report he writes on their employability, he will apparently be too scared to be honest. Far better he should be able to write what he likes about the patient, whether accurate or not and the patient should have no opportunity to either see what is written or to confirm or deny it's accuracy. He is convinced we should return to the days of "doctor knows best" and clearly, he could never possibly be wrong. His opinion only affects the entire livelihood of the individual he judges, after all, why should they have a say?
He is certain that people do not complain because he or his colleagues ever get things wrong, but because they don't like their conclusions. Allowing a patient to see what he has written might cause them to disagree with him and that would never do. Clearly, the only reason they may ever disagree is because a comfortable life of luxury on a whopping £101 per week might slip from their grasp. He could never actually be wrong.
But the part that terrified me the most, the part where I stopped laughing at his archaic views and "quaint" paternalism, was in his 3 suggestions for improving the system of disability assessment at the end of the article. (Incidentally, he regularly conflates long term illness with disability, but I'm sure it was unintentional....)
His 2nd of 3 suggestions was that
Think about that a bit more. It also means that every one of those ppl he would consign to life of isolation and almost certainly great poverty, is able to get exactly the same education an able-bodied peer might get. Transport, access, and almost everything else in life most take for granted would have to be just the same for the person living with an impairment as for those who do not. It would have to take them the same amount of time to achieve comparable tasks. What's more, it would mean a society that never discriminates against employing a disabled person over someone without a disability, never allows disability discrimination in the workplace or place of learning, and that never indulges in hate crime or bullying. But Dr Certainty appears not to have thought of that.
So let's turn the Dr's own question back to him. How is it that 2 Drs with identical qualifications and clinical experience can come to totally different opinions of their patients? How is it that one can see the whole person, taking into account education, wealth, opportunity, mental state and family circumstance, while another can only see a diagnosis?
Perhaps if the DWP spent as much time weeding out judgmental, paternalistic, ignorant, potentially dangerous Drs as they do seeking mythical hoards of supposed benefit cheats, the health of the nation might improve dramatically.
But no. The author claims to be a currently practicing physician. It's hard to believe, in fact, that he isn't Iain Duncan-Smith in disguise.
Let's start with
"a common driver to ill health is the welfare state. In short, it appears that being sick has become a way of life and a career choice for a worryingly high percentage of the population."A remarkably static 2.5 million people in the UK claim an out of work benefit due to sickness or disability. They are not the same people, rather people come on and off the benefit as conditions appear and subside. That's less than 3% of the population. Presumably our doctor author doesn't think ALL of them have simply adopted cancer or Parkinson's as a "career choice" meaning that less than 2% is a "worryingly high percentage" in his world. It may be best if we disregard any further maths related claims he makes.
He goes on to tell us that
"Two patients can have identical pathology but with striking differences in illness behavior."Lets take a look at that shall we? Take one man in his mid 50s living in Surrey with diabetes. He has private healthcare, a comfortable home, a supportive family and can afford an excellent diet and membership to his local gym. His diabetes is under excellent control. Another man the same age with exactly the same pathology lives in Glasgow in poverty with no family or assets. He cannot afford to eat well and finds it very hard to exercise without support and encouragement. He becomes depressed and his diabetes is unstable and poorly controlled
Sadly, our doctor friend can only see the world through a medical prism, so none of those things matter. What's more, given his income, lifestyle and opportunities as a doctor, he is much more likely to identify with the first man than the second.
Now, I wouldn't want you to think that the good doctor is basing his judgements on anecdote alone. No, he refers to
"One informal survey of colleagues from around the UK placed the figure [of malingerers] at between 10% and 90%."Phew, that's OK than. We have an "informal" survey with an 80% margin of error. I'd hate to think we were just making things up as we went along.
The next section of the article aims to make the case that we should return to a system in which the patient not only has no say in outcomes, but is actually not kept informed in any way. If a doctor has to show a patient the report he writes on their employability, he will apparently be too scared to be honest. Far better he should be able to write what he likes about the patient, whether accurate or not and the patient should have no opportunity to either see what is written or to confirm or deny it's accuracy. He is convinced we should return to the days of "doctor knows best" and clearly, he could never possibly be wrong. His opinion only affects the entire livelihood of the individual he judges, after all, why should they have a say?
He is certain that people do not complain because he or his colleagues ever get things wrong, but because they don't like their conclusions. Allowing a patient to see what he has written might cause them to disagree with him and that would never do. Clearly, the only reason they may ever disagree is because a comfortable life of luxury on a whopping £101 per week might slip from their grasp. He could never actually be wrong.
But the part that terrified me the most, the part where I stopped laughing at his archaic views and "quaint" paternalism, was in his 3 suggestions for improving the system of disability assessment at the end of the article. (Incidentally, he regularly conflates long term illness with disability, but I'm sure it was unintentional....)
His 2nd of 3 suggestions was that
"if a patient were wheelchair-bound but had full mental faculty then financial support would be provided to assist with mobility only if they were active in terms of work"So let's say you have cerebral palsy or quadriplegia. In the world of our Dr Certainty, the only thing they need to get work is "full mental faculty". Whether they have constant infections or regular falls or seizures or uncontrollable limb spasms or any number of other related challenges to overcome is irrelevant. If they can think, they can work or they deserve to be prisoners in their own homes indefinitely.
Think about that a bit more. It also means that every one of those ppl he would consign to life of isolation and almost certainly great poverty, is able to get exactly the same education an able-bodied peer might get. Transport, access, and almost everything else in life most take for granted would have to be just the same for the person living with an impairment as for those who do not. It would have to take them the same amount of time to achieve comparable tasks. What's more, it would mean a society that never discriminates against employing a disabled person over someone without a disability, never allows disability discrimination in the workplace or place of learning, and that never indulges in hate crime or bullying. But Dr Certainty appears not to have thought of that.
So let's turn the Dr's own question back to him. How is it that 2 Drs with identical qualifications and clinical experience can come to totally different opinions of their patients? How is it that one can see the whole person, taking into account education, wealth, opportunity, mental state and family circumstance, while another can only see a diagnosis?
Perhaps if the DWP spent as much time weeding out judgmental, paternalistic, ignorant, potentially dangerous Drs as they do seeking mythical hoards of supposed benefit cheats, the health of the nation might improve dramatically.
Saturday, 13 September 2014
Fund Page for Plea for Help
You know, when I published my post, "Plea for Help" this morning (full text below), I ummed and ahhhhed over setting up a fund page. I have never, ever asked others for cash unless it was to save someone's life or keep myself campaigning.
On balance, I think we probably DO need to save a life and so have set up this page XXXX
Promise me that if you can't afford to donate, you won't. Sharing the link or offering other kinds of support is just as valuable if not more so. But people are often frustrated they don't live in the area to physically help and want other ways of showing support.
But the cold hard fact is she needs money. To save her home, improve her diet and offer her a little security, some breathing space for a while. She admitted that her biggest fears were financial.
You can DONATE HERE by clicking on the bold text.
Full text of original post :
"Plea for Help
As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.
But I can't do everything I can do at home.
A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.
But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.
I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :
- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.
If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.
I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.
If you have the time, will and skills she needs, please email me on suey2y@gmail.com
Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers."
On balance, I think we probably DO need to save a life and so have set up this page XXXX
Promise me that if you can't afford to donate, you won't. Sharing the link or offering other kinds of support is just as valuable if not more so. But people are often frustrated they don't live in the area to physically help and want other ways of showing support.
But the cold hard fact is she needs money. To save her home, improve her diet and offer her a little security, some breathing space for a while. She admitted that her biggest fears were financial.
You can DONATE HERE by clicking on the bold text.
Full text of original post :
"Plea for Help
As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.
But I can't do everything I can do at home.
A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.
But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.
I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :
- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.
If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.
I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.
If you have the time, will and skills she needs, please email me on suey2y@gmail.com
Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers."
Plea for Help
As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.
But I can't do everything I can do at home.
A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.
But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.
I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :
- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.
If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.
I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.
If you have the time, will and skills she needs, please email me on suey2y@gmail.com
Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers.
** I have added a fund page if this an easier way to help for you. ONLY donate if you can afford to
DONATE HERE
But I can't do everything I can do at home.
A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.
But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.
I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :
- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.
If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.
I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.
If you have the time, will and skills she needs, please email me on suey2y@gmail.com
Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers.
** I have added a fund page if this an easier way to help for you. ONLY donate if you can afford to
DONATE HERE
Friday, 12 September 2014
There's Always a Gladys
Every single time I'm in hospital, there will be an old lady in my bay that I fall in love with.
Way back in 1995, it was Gladys. Gladys would flirt with my Dad, every time he walked onto the ward greeting him with a loud "Allo Faaarver", offering to share her humbugs with him.
The NHS was in a very dark place indeed in 1995. After 16 years of Conservative erosion, staffing levels had fallen to the most dangerously low levels I've ever experienced and nurses were even striking in a last ditch attempt to win the battle for excellent health care, free at the point of use.
One day, just one student nurse was left on a ward of 22 patients. Without 2 trained staff nurses no controlled drugs could be given, patients screamed with pain, an old man fell by his bed and another patient had to help her lift him back up. The good nurses had long since suffered stress related breakdowns or given up their jobs, and only those who didn't really care how much their patients suffered remained.
A very few dedicated heroes, doctors and nurses worked straight shifts just to keep the NHS on life support. It wasn't unusual to meet doctors on 72 hour marathon shifts or nurses staying hours in unpaid overtime to bridge the gaps.
There was no-one to hold Gladys' drink for her or feed her meals. Dad and Dave took shifts just to make sure she got any fluids or nutrition at all.
The thing that unites these remarkable women is forbearance. Not once do they ever complain. Not once do they ask for anything, not once do they mention the often excruciating pain they suffer through. I've become a world expert at spotting it. Good nurses recognise that the strength of this generation - the generation who fought for our freedom - means they must always be sure they are getting what they need. You'll never hear them fighting for themselves, never. They apologise every time anyone does something for them, convinced they aren't worthy of the basic care and dignity my generation insist upon. I imagine they have never asked for anything for themselves, instead, dedicating their lives to helping others - their families, friends and lovers.
How easy it is to look through them. To forget that they loved and cared, just as we do. How easy to forget that they may have climbed mountains or swum oceans in those glorious days of vitality and youth. How easy to forget they may have been brain surgeons or explorers or olympians. How easy to patronise them now, as the broken and spent shells of their bodies belie the gifts of their past.
Very occasionally, I hear a member of staff speak to them with contempt. Perhaps tell them off as though they were little children or patronise them as though their brains had always been 95 years old. I've seen them dismiss worried life partners or leave them too long in their own mess - after all, they'll never complain will they?
We have a duty to this generation to understand their stoicism. To remember their great bravery, a bravery that thanks to them, most of us have never had to show. We have a duty to make utterly sure that their final days are lived in dignity and as much comfort as we can possibly ensure. We have to remember they were born in a time before antibiotics or heart transplants. They accept pain and misery we could never contemplate.
But our gift to them must be to provide for their needs even when they are so unlikely to express them. To realise that when they say it "hurts a bit" they are close to their limit. To realise that they would never dream of asking someone to feed or wash or dress them - the shame!!
I'm proud to say that almost every member of staff in this hospital do so admirably and with touching compassion and care.
But back in 95, we got a phone call from Gladys' family. She had been readmitted and this time, there was no "faaarver", no busy-body patient in the bed opposite. She had died of dehydration for want of someone to hold her cup and gently ease the straw between her lips.
Was it cruelty? Neglect? I don't believe so. It was understaffing. And we are on that same slippery slope again.
This stay it is Ivy* Ivy is dying in great pain. Sid* comes in every morning without fail at 8am, wearing his best smart blazer and his pork-pie hat, in order that she may nag him as she has every morning for the last 70 years. He combs her hair and holds her glass of milk and brushes her cheek tenderly as he says goodbye. As he turns to walk away, only I see the tear he tries to hide.
We can stop this Britain. We can demand the NHS we cherish. or we can let it descend into a living horror story. Again. It's up to us.
If only for the generation that gave us our freedom, please, don't let it slip away.
Way back in 1995, it was Gladys. Gladys would flirt with my Dad, every time he walked onto the ward greeting him with a loud "Allo Faaarver", offering to share her humbugs with him.
The NHS was in a very dark place indeed in 1995. After 16 years of Conservative erosion, staffing levels had fallen to the most dangerously low levels I've ever experienced and nurses were even striking in a last ditch attempt to win the battle for excellent health care, free at the point of use.
One day, just one student nurse was left on a ward of 22 patients. Without 2 trained staff nurses no controlled drugs could be given, patients screamed with pain, an old man fell by his bed and another patient had to help her lift him back up. The good nurses had long since suffered stress related breakdowns or given up their jobs, and only those who didn't really care how much their patients suffered remained.
A very few dedicated heroes, doctors and nurses worked straight shifts just to keep the NHS on life support. It wasn't unusual to meet doctors on 72 hour marathon shifts or nurses staying hours in unpaid overtime to bridge the gaps.
There was no-one to hold Gladys' drink for her or feed her meals. Dad and Dave took shifts just to make sure she got any fluids or nutrition at all.
The thing that unites these remarkable women is forbearance. Not once do they ever complain. Not once do they ask for anything, not once do they mention the often excruciating pain they suffer through. I've become a world expert at spotting it. Good nurses recognise that the strength of this generation - the generation who fought for our freedom - means they must always be sure they are getting what they need. You'll never hear them fighting for themselves, never. They apologise every time anyone does something for them, convinced they aren't worthy of the basic care and dignity my generation insist upon. I imagine they have never asked for anything for themselves, instead, dedicating their lives to helping others - their families, friends and lovers.
How easy it is to look through them. To forget that they loved and cared, just as we do. How easy to forget that they may have climbed mountains or swum oceans in those glorious days of vitality and youth. How easy to forget they may have been brain surgeons or explorers or olympians. How easy to patronise them now, as the broken and spent shells of their bodies belie the gifts of their past.
Very occasionally, I hear a member of staff speak to them with contempt. Perhaps tell them off as though they were little children or patronise them as though their brains had always been 95 years old. I've seen them dismiss worried life partners or leave them too long in their own mess - after all, they'll never complain will they?
We have a duty to this generation to understand their stoicism. To remember their great bravery, a bravery that thanks to them, most of us have never had to show. We have a duty to make utterly sure that their final days are lived in dignity and as much comfort as we can possibly ensure. We have to remember they were born in a time before antibiotics or heart transplants. They accept pain and misery we could never contemplate.
But our gift to them must be to provide for their needs even when they are so unlikely to express them. To realise that when they say it "hurts a bit" they are close to their limit. To realise that they would never dream of asking someone to feed or wash or dress them - the shame!!
I'm proud to say that almost every member of staff in this hospital do so admirably and with touching compassion and care.
But back in 95, we got a phone call from Gladys' family. She had been readmitted and this time, there was no "faaarver", no busy-body patient in the bed opposite. She had died of dehydration for want of someone to hold her cup and gently ease the straw between her lips.
Was it cruelty? Neglect? I don't believe so. It was understaffing. And we are on that same slippery slope again.
This stay it is Ivy* Ivy is dying in great pain. Sid* comes in every morning without fail at 8am, wearing his best smart blazer and his pork-pie hat, in order that she may nag him as she has every morning for the last 70 years. He combs her hair and holds her glass of milk and brushes her cheek tenderly as he says goodbye. As he turns to walk away, only I see the tear he tries to hide.
We can stop this Britain. We can demand the NHS we cherish. or we can let it descend into a living horror story. Again. It's up to us.
If only for the generation that gave us our freedom, please, don't let it slip away.
Monday, 11 August 2014
Deferred Gratification
There's a white room.
You are sitting on the only chair and there is a table. The only other things in the room are a jug filled with diluted bleach, a plastic cup, a laptop with a wi-fi connection and a syringe marked "antidote".
Every three hours, you must sip your way through a cup of the bleach solution. If you choose, you can down it and wait for the next cup. You soon learn that's the best way. There is absolutely no way of avoiding the bleach. If you were to try, you'd be dead within a few days.
Every sip rips through your oesophagus to rest just above your solar plexus in a ball of unspeakable pain. It slices and gnaws and burns like a little part of hell itself.
You come to dread that cup and the jug and even the chair. The only thing you have to distract you is the infinitely captivating world wide web. You can absorb yourself in dramas or documentaries, music or poetry. You can research great conundrums or chat with friends. You can read novels, or play quizzes, you can learn a new language or anesthetise yourself 24 hours straight with cute kittens. But distraction is all you have. The only opiate you can rely on.
You only get one antidote per week. Once you've used it, you must bear the next 6 days no matter what. Constantly you ask yourself, "Is it now? Do I give up now? Can I take any more, even just a few minutes?" Whatever happens, you are the one who has to choose. No-one can do it for you, you're totally alone in the room.
Endlessly, endlessly, endlessly, the thing sustaining you is the thing causing your suffering. The only other option is death, so no matter how hard it gets, how desperate you feel, you have no choice but to keep sipping that bleach. Often you wonder if the mere act of it keeping you alive is enough. Is life really so important that you will go to any lengths to cling to it? Many days you struggle to remember why this life is so much better than the alternative.
But you always remember in the end, always. Every single breath you take whispers "I'm a Mum, I'm a wife, a daughter, a friend." There is simply no "quit" button.
So you sip and you burn in an endless loop.
And it's those final hours just before the week gasps away that are the hardest. Something about imminent relief somehow makes the here-and-now pain harder to bear. You find this odd. Surely it should be the other way around? But like a long car journey, it's always those last few miles from home that seem to take the longest.
You count out every minute. You try everything not to, but clearly time has stopped. Every time you glance at the clock it seems not to have changed. You begin to believe the very laws of physics have altered, just for you.
Soon, you are gritting your teeth through the sheer force of self-denial. You sweat, silent tears falling onto your cheeks. Gutteral, bestial noises escape from you like pressure cooker steam, involuntary and strange, as though they are coming from someone else. They surprise you.
Distraction is in fragments, almost shattered completely. You read the same paragraph over and over and over again, watch the same movie scene. You re-wind and re-peat and re-watch but just cannot snatch a single one of those elusive, whirling, distractions.
At long last, like rain after a long drought, the antidote is yours. You grab it, you're shaking. It's almost too hard to administer it at all. You remind yourself you have to focus for just a few moments more. Finally, you start to feel it, seeping and warm, spreading to every last cell.
The relief is overwhelming - so overwhelming that you start to cry all over again from sheer cathartic release. That relief is like bread to a starving man, like a breath of life itself.
How is it that those clocks sped up? That time now passes in cotton-wool chunks, blurred and casually ignored once again? How is it that relief hours are so much more fleeting than suffering hours? The pain is gone, but only on the surface. Somehow, it's taken you with it, replaced your soul, your very spirit. You're left feeling depressed and anxious but you couldn't say why. You can't explain that sudden lack, that chasm so recently filled with pain, now echoing empty and rootless.
Yet all too soon it is wearing off, seeping away as quietly as it came. You try to hold those anti-dote minutes and hours in every last cell, but it's beyond your control. Everything is beyond your control. Except the table, the cup, the jug........
*************
There is often a terrible paradox in long term illness. The very thing causing your suffering is the one thing you have to do to survive. I have bowel disease but food is not optional, basic sustenance is compulsory. All food is bleach to me. Those with failing lungs still have to breathe, air is their bleach. Those with failing minds still have to think.
Clearly only the most committed masochists would ever survive it.
You are sitting on the only chair and there is a table. The only other things in the room are a jug filled with diluted bleach, a plastic cup, a laptop with a wi-fi connection and a syringe marked "antidote".
Every three hours, you must sip your way through a cup of the bleach solution. If you choose, you can down it and wait for the next cup. You soon learn that's the best way. There is absolutely no way of avoiding the bleach. If you were to try, you'd be dead within a few days.
Every sip rips through your oesophagus to rest just above your solar plexus in a ball of unspeakable pain. It slices and gnaws and burns like a little part of hell itself.
You come to dread that cup and the jug and even the chair. The only thing you have to distract you is the infinitely captivating world wide web. You can absorb yourself in dramas or documentaries, music or poetry. You can research great conundrums or chat with friends. You can read novels, or play quizzes, you can learn a new language or anesthetise yourself 24 hours straight with cute kittens. But distraction is all you have. The only opiate you can rely on.
You only get one antidote per week. Once you've used it, you must bear the next 6 days no matter what. Constantly you ask yourself, "Is it now? Do I give up now? Can I take any more, even just a few minutes?" Whatever happens, you are the one who has to choose. No-one can do it for you, you're totally alone in the room.
Endlessly, endlessly, endlessly, the thing sustaining you is the thing causing your suffering. The only other option is death, so no matter how hard it gets, how desperate you feel, you have no choice but to keep sipping that bleach. Often you wonder if the mere act of it keeping you alive is enough. Is life really so important that you will go to any lengths to cling to it? Many days you struggle to remember why this life is so much better than the alternative.
But you always remember in the end, always. Every single breath you take whispers "I'm a Mum, I'm a wife, a daughter, a friend." There is simply no "quit" button.
So you sip and you burn in an endless loop.
And it's those final hours just before the week gasps away that are the hardest. Something about imminent relief somehow makes the here-and-now pain harder to bear. You find this odd. Surely it should be the other way around? But like a long car journey, it's always those last few miles from home that seem to take the longest.
You count out every minute. You try everything not to, but clearly time has stopped. Every time you glance at the clock it seems not to have changed. You begin to believe the very laws of physics have altered, just for you.
Soon, you are gritting your teeth through the sheer force of self-denial. You sweat, silent tears falling onto your cheeks. Gutteral, bestial noises escape from you like pressure cooker steam, involuntary and strange, as though they are coming from someone else. They surprise you.
Distraction is in fragments, almost shattered completely. You read the same paragraph over and over and over again, watch the same movie scene. You re-wind and re-peat and re-watch but just cannot snatch a single one of those elusive, whirling, distractions.
At long last, like rain after a long drought, the antidote is yours. You grab it, you're shaking. It's almost too hard to administer it at all. You remind yourself you have to focus for just a few moments more. Finally, you start to feel it, seeping and warm, spreading to every last cell.
The relief is overwhelming - so overwhelming that you start to cry all over again from sheer cathartic release. That relief is like bread to a starving man, like a breath of life itself.
How is it that those clocks sped up? That time now passes in cotton-wool chunks, blurred and casually ignored once again? How is it that relief hours are so much more fleeting than suffering hours? The pain is gone, but only on the surface. Somehow, it's taken you with it, replaced your soul, your very spirit. You're left feeling depressed and anxious but you couldn't say why. You can't explain that sudden lack, that chasm so recently filled with pain, now echoing empty and rootless.
Yet all too soon it is wearing off, seeping away as quietly as it came. You try to hold those anti-dote minutes and hours in every last cell, but it's beyond your control. Everything is beyond your control. Except the table, the cup, the jug........
*************
There is often a terrible paradox in long term illness. The very thing causing your suffering is the one thing you have to do to survive. I have bowel disease but food is not optional, basic sustenance is compulsory. All food is bleach to me. Those with failing lungs still have to breathe, air is their bleach. Those with failing minds still have to think.
Clearly only the most committed masochists would ever survive it.
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