If a Person with Learning Difficulties Dies of Neglect in a Hospital and Nobody Reports It, Do They Make a Noise?

I feel sick. Absolutely sick. Less than a week after Stafford, the Department of Health orders an inquiry into the deaths of six people with learning difficulties in hospital.This has been prompted by a report from the Ombudsman, which largely upholds the complaints made by relatives through Mencap's 'Death from Indifference' submission to the Ombudsman. One of those who died was left without food in hospital for 26 days.

So, how did the Fourth Estate react to it all?

At lunchtime, the BBC reported it as the third story on the news bulletin. On the six o clock news, the one that most people watch, it was reported towards the end of the programme. On its website, again it has not comment enabled the story; you can send an email to the Beeb, if you're brave enough to do so, which of course most people won't be. And it has no mention on the 'Have Your Say' page. Still, that was better than Channel 4, which did not report the story at all, but instead did a report on a paranoid schizophrenic who was convicted of the murder of a policeman in Luton. He was an asylum seeker as well, so that's two prejudices supported for the price of one.

I've still to do a trawl of other media sites, but I'm not holding out much hope. I can hear the furious sound of digging and I am sure that this story will be buried by tomorrow.

Two questions.

1.What has to happen for us to take abuse of the elderly, disabled and those with learning difficulties, seriously?

2. If a person who is elderly, disabled or with learning difficulties dies of neglect in a hospital and nobody reports it, do they make a noise?


The picture of the screaming tree is from the excellent Alexandre Jay art blog.

After the Storm, the Deathly Silence

So the day after it is reported that 400 people have died at a hospital as a result of maltreatment and neglect, what has the media got to say about it? I did a trawl of the various news sites and this is what I came up with

BBC Homepage - no mention of Stafford on the front page. No mention in 'Have Your Say'. Article relegated to a regional page for England, so that you have to use the search facility for it. Any comments have to have an email address and name and they are not published underneath the article.

BBC News - No follow up in the main news bulletin of the Stafford story.

The Herald - One article, around 200 words long, on an inside page. Not comment enabled. Nothing in yesterday's paper either.

Channel 4 - Nothing about Stafford on the front page of the website. Article is a couple of clicks in. Not comment enabled.

STV News - Nothing on front page of website. Nothing in the UK News section further in.

The Scotsman - One article yesterday, not comment enabled. One article today, 61 words long, comment enabled.

Daily Record - one article, not comment enabled.

I found two honorable exceptions; the Daily Mail, which has a substantial article on the front of its website, and the Guardian has an excellent opinion piece on the scandal by Allyson Pollock. Everywhere else there is nothing but the sound of silence.

The last time I remember this happening was when the junior doctors marched on Parliament. There were 20 000 of them, including the Queen's own surgeons. Channel 4 did a piece about 10 seconds long on them, with a video. In a later bulletin, there was no video and just a fleeting reference to the march. There was a rumour at the time that the government had slapped a DA notice on reporting of the march. This is a request/demand by the government to the media not to report on a subject for reasons of national security or sensitivity. I don't know what is going on here, but someone somewhere has definitely put the kabosh on this story.
If you want to do something about it, here is the BBC page with the story. I have sent them an email asking them why they have not comment-enabled this in the usual fashion; maybe you can do the same. As to all you editors out there, shame on you. Here's what Martin Neimoller had to say about not standing up for people;



First they came for the Communists, and I didn’t speak up,
Because I was not a communist
Then they came for the sick, the so-called incurables, and I didn't speak up,
because I wasn't mentally ill.
Then they came for the Jews, and I didn't speak up,
Because I wasn't a Jew.
Then they came for me, and by that time there was no one left
to speak up for me.

Stafford Hospital- The Shock that is no Surprise

The big story in health today is undoubtedly that of Stafford hospital and the maltreatment of the elderly in their care. People wandering the corridors, drinking water out of flower vases because they were so thirsty, patients lying in soiled beds.. The list goes on and on. Now heads are going to roll and already the media is trying to establish ‘who is to blame’. But do you know the shocking thing about this story? The shocking thing is that it’s not shocking, at least not to those of us who work in the care system or are recipients of it. Across Britain today, there will be nurses, doctors, carers and social workers nodding their heads grimly at this, because this problem is present to a greater or lesser extent everywhere in care homes and hospitals. It is endemic. But why is this happening? That is what I am going to talk about in this post.

As those of you who are regularly on this blog know, I care for my mum who has Alzheimers. One day six years ago, I came to the conclusion that every problem that I had with my mum’s care had a political root, and if anything was going to change, I had to get involved in politics and try to change it from there. The particular thing that triggered me was the closure of nursing homes in my area. Why, when we had a growing elderly population, was our council shutting nursing homes? Shouldn’t they have been increasing them? I went along to a carer’s conference to ask that question. There was a good crowd there and there was a mixture of carers and professionals from the NHS and social work. I got hold of the mike and put my question to the chair, ‘Why are we shutting nursing homes when we have a growing elderly population, and where are all the elderly going to go?’
I still remember the deathly chill that followed my question. Up until that point, things had been fairly cheerful and there was a buzz of chat; suddenly the whole place was quiet and the temperature dropped about ten degrees. The answer that I was given was that they did not want to shut nursing homes, but there was a problem with the cost as we had a growing number of elderly people. Afterwards, one of the social workers came up to me.
‘I really want to thank you for asking that question’, she said. ‘ We all wanted to ask that, but we were too scared to.’

The answer that I was given was in no way acceptable, but it is true. The reason that nursing homes are shutting and the reason that Stafford hospital happened, is because there are a growing number of elderly and we do not want to fund the cost of their care. This cost cutting has been going on for a number of years in various forms;

Closure of day hospitals, cottage hospitals and local authority nursing homes;

Re-defining care of long term conditions such as dementia as ‘social care’, thus shifting funding of the person’s care to the much smaller local authority budget;

Spending only £11 per head on dementia research as compared with £289 per head for cancer;

Reducing the numbers of beds in hospitals, so that there is no room for geriatric ‘bed blockers’;

Setting impossible financial targets that can only be achieved by cutting staff and therefore leaving wards understaffed;

Persecuting anyone who dares to complain about standards. Dr Rita Pal’s story is a salutory warning for anyone in the NHS contemplating rebellion.

But it is not just central government that is to blame. The media are very much to blame as well. Why? Because they have under-reported it. And they have done this, I believe, quite consciously. I have been on several media sites tonight looking at the Stafford story and a notable number of sites that usually have a comment facility for stories, have not enabled commenting. On the BBC site, commenting is allowed, but the person has to give a name and an email address. It has not included the story on its ‘Have Your Say’ section, which you would expect for a scandal like this. This means that NHS workers and other professionals who wish to report a similar situation, but remain anonymous, cannot do so.

Which brings me to my final point. Now there’s been a three week gap between this post and the last and there’s been a reason for that. And the reason was that I did not want to say what I am going to say now, but the Stafford hospital situation has given me the impetus to do so. It’s this. If you take away elderly care homes, if you do not fund research into elderly diseases, if you take away their hospital beds, if you take away dementia medicines as NICE has done, and if you leave them in soiled beds, and reduce them to drinking water out of flower vases because you are too busy to give them fluids; if you constantly say, ‘ We can’t afford to look after you’, what is the next logical step in this process?

Get rid of them.

And that is why, Margo, no matter who puts forward the argument (and you are an MSP that I like), no matter how many programmes the BBC puts on in sympathy, no matter how untrendy it is made to oppose euthanasia, that is why I will never, ever, ever, support a change in the law to make euthanasia legal and ‘give people a choice’. The elderly, the disabled and the weakest in our society would be left completely exposed in the face of such a ‘choice’ and completely at the mercy of the grey men with clipboards who are constantly striving for such ‘streamlining’. Money drives policy and this is an area of policy that would shift very quickly from compassion to economics. People rarely venture into territory like this on their own, but as with the Stafford situation, staff can be bullied, overworked, undermined and frightened into an abusive situation and come to regard it as normal and that is why the law should remain as it is.

Finally, to go back to the carer’s conference. A few weeks later I was attending a meeting with some of the people who had been there and we started talking about care of the elderly. One of them said how she had asked the same question as myself in her office and the person in charge said, ‘In a few years, the elderly won’t be a problem.’

You have been warned.

Live and Let Die? Margo McDonald's 'End of Life Choices' Bill

On the 8th Dec last year, Margo McDonald launched her ‘End of Life Choices’ consultation. This was a follow on from Jeremy Purvis’s ‘Dying with Dignity’ bill, which was an assisted suicide bill but was unsuccessful. On 8th March (next Sunday), the consultation period will come to an end and the bill will be circulated in Holyrood for a month to gather support. If it gets the support of eighteen MSPs or more, then it will pass, subject to a vote in Holyrood.

As someone who has been a carer for a dementia sufferer for ten years, and as a health campaigner, I want to contribute to this debate. My next couple of posts will be devoted to the proposed bill itself and the backdrop to it. The implications of this document are wide ranging, and I think it is important that people understand exactly what is likely to happen if this bill becomes law.

The ‘End of Life Choices’ consultation is a fairly free flowing document, informal in structure. It describes in detail the case of Diane Pretty, Daniel James and other high profile assisted suicide cases. Further on into the document, it starts to outline the details of what the bill would consist of.


Definition of ‘assisted dying’

The normal definition of assisted suicide or “assisted dying” as it is called in this bill, is where a physician supplies the medication and the means by which the person will end their life, but the patient has to administer the medication themselves. This is distinguished from euthanasia, where the physician can also administer the medication to the patient. This is a fine, but an important difference between the two, because with assisted dying it is clearer that the patient actually gave consent. Assisted dying has been favoured as a middle ground for this issue; in Oregon, patients can take their medication home and in around half of these cases, the patient has chosen not to go ahead.

However, in this bill, assisted dying has been defined as follows;

‘ A medical practitioner administers a lethal dose of medication to terminate a patient’s life, or supplies the means, and assists the patient to self administer.’

This means that this bill is not an assisted dying bill, but it is actually a euthanasia bill under this definition. Therefore, in considering the possible consequences of this bill, we should be looking at the example of Holland, which it most closely resembles. Examples such as the Northern Territories in Australia and Oregon in America should be discounted.

Who can apply for this?

The bill states that it applies to ‘capable adults who are residents of Scotland,’ ie those who are over 16 and sound of mind. The circumstances under which they can apply for this are if they are terminally ill, suffering from a degenerative condition or if they become unexpectedly incapacitated. However, it then goes on to say,

‘Patients who are not terminally ill, suffering from a degenerative condition or unexpectedly incapacitated, but who find their life to be intolerable may request assistance to end it..’

This is a very wide ranging definition and it is not clear who it is referring to. This might be someone who is medically ill. Then again, it might be someone who is not medically ill, in which case the role of the doctor towards the person requesting assistance is unclear. The word ‘patient’ has been put in inverted commas all through the document. Does this mean that someone who requests this does not need to be ill to do so?


Who can perform this?

The bill states that an ‘assisting physician’ should be the person to carry out the request. What is normally understood by this, is that it will be a doctor. However, at the back of the draft, ‘attending physician’ is defined as follows;

..ordinarily, the GP or physician who has primary responsibility for care and treatment of the patient, but may be another suitably qualified health professional.

This does not define what a 'suitably qualified health professional' is. This might be a doctor; then again it might refer to a nurse, a nurse practitioner, a health worker or even a pharmacist. It is simply not clear what this means.


Documentation

The condition for allowing a request for assisted suicide, is that the patient makes two verbal requests, 15 days apart. These requests are documented in the attending physician’s notes. Apart from this, no written evidence or corroboration is required from a witness. The request can be carried out by one doctor on the patient, without a third party intervening at any point. Post mortem, he is required to request that a review committee verify that the specified criteria and safeguards had been observed, but it is difficult to see how they could do this, if the only documentation comes from the physician who carried out the request. In cases where the patient’s mental capacity is in doubt, there needs to be a ‘consulting health professional’ to give a second opinion, but in all other cases, one physician is sufficient.

Because the definition of ‘assisting physician’ is so vague, it is unclear as to who is actually going to be responsible for keeping the documentation. If, for example, a nurse practitioner carried this out, would they be responsible for the documentation or the doctor that the patient was registered to?

Further Considerations

People who are mentally incapacited are excluded from this bill at present. It is worth noting however, that the ‘rule of thumb’ test for someone’s capacity esp in the case of dementia, is whether they can sign their name. There are many people with dementia who can sign their name, but have no idea what they are signing and this could be abused.

Under the Adults with Incapacity Act, if a person has not previously arranged a power of welfare attorney with a relative, welfare attorney goes by default to the nurses and doctors responsible for their care at that time. This could result in a conflict of interest especially in a hospital setting, if the bill’s definitions widened. There is a possibility that this could happen, because under European law, omitting the mentally incapacitated from a service could be classed as discrimination. As I speak, the Dutch are drafting legislation to include people with mild dementia under their euthanasia laws.

I understand that this is currently a consultation document and not a legal document at present. However, I am surprised at the lack of detail, at the re-definitions of terms like ‘physician’ and ‘assisted suicide’ which are going to lead to a great amount of confusion and the wide range of the bill. If this ever gets to committee stage, it will have to be completely re-written or ditched altogether; there are too many holes in it. Whether you are for or against euthanasia, this is not fit for purpose.

Raising the Stakes- Getting a Deal on Refinancing

It's the words that make the lawyers groan, and the private sector rub their hands.

Voluntary code. It's that grey middle ground when a government knows that it should make a definite law about something, but doesn't, because it is afraid of the consequences. So it puts down what someone should do, thus taking the side of the angels, but makes sure that the government does not have to act if big business walks all over the code with tackety boots. It's a wimp's charter.

So it happened with the re-financing of PFI deals. Just to explain exactly what re-financing is, it works like this;

In a PFI contract, you have a consortia, or a number of players. The banks are the lenders. The contractors building the project are the borrowers. And the public bodies are the payers in the form of a rent paid to the contractor who owns the building. Are you still with me?

The public body doesn't have a direct relationship with the lender. They pay the rent that the borrower charges, and the borrower uses this money to pay the loan that the bank gave them. At the start of a project, the risk is higher, so the bank charges a higher rate of interest on the loan. When the project is completed, there is a lower risk, so the borrower can negotiate for a lower rate of interest. This is known as re-financing of the loan. Now when the borrower does this, they have a choice. They can go on charging the payer the original rent, or they can pass on part of the saving to the payer. Guess what route the borrowers took? Yep, they kept all that lovely money to themselves. And why did this happen? The Treasury had 'negotiated a voluntary code' that they should pass on 30% of refinancing profits to the payer, but they didn't. It was voluntary. It was assumed they would do the honorable thing, but hey, they never claimed that they were gentlemen. And rack up some more profits by charging outrageous costs on maintenance contracts, like £400 for changing a light switch and you've got yourself a nice cash cow, backed up by a sound investor that ain't ever going to go bust, because the government can't allow NHS trusts and local councils to go bust.And there was very little the Treasury could do about it, because there was no law against it, you couldn't change a commercial contract and they had little or no leverage with the banks; the banks had control of the Treasury. Until now, that is.

Over the past few months, the government has been nationalising our high street banks, by becoming the majority share holder. This is particularly significant in Scotland, where Westminster has taken a 70% majority stake in the Royal Bank of Scotland. RBS is one of the biggest players in PFI in Britain and so the government has effectively taken control of all the contracts that RBS owns. Jamie Hepburn, an SNP MSP has realised this and wrote to the Treasury asking if they could not get the public a better deal on PFI. The Treasury neatly dodged the question by saying that it couldn't re-negotiate PFI contracts and it would be detrimental to the banks interests and ultimately to the public purse to do so.

Now this is just codswallop. Think about it for a minute. The government owns a 70% stake in RBS which makes it both lender, shareholder and payer. Any money the government makes as a shareholder, is going to be lost at the other end as NHS trusts and local authorities struggle with payments. But if it leans on the likes of Laing, Serco and Balfour Beattie to be more generous on its re-financing profits, then it will mean that NHS trusts and local authorities can share in the profits and the government will get more bang for its buck. It is all public money, but it means that more of it will stay in public hands, instead of being poured down a black hole of rack renting on the part of the private sector. The government won't get a better opportunity to sort PFI out. It should take it.

Jamie, you're right about this.Find yourself a friendly MP down in Westminster and keep pressing. It could save us and the government an awful lot of money.

Ageing with Grace - The Nun Study

One of the main health stories today, was an appeal for people to donate their brains to science to help with the study of diseases like Alzheimers and Parkinsons. Brain donation is relatively rare and there are various theories as to why this is the case. Some think that because it is so tied up with personality that there is a reluctance to do so; others that it is because people get donation of organs and donation to medical science mixed up. But maybe it's the simplest reason of all; that the scientists didn't think to ask. This story reminded me of a scientist who did ask, and who now conducts one of the most comprehensive longitudinal studies of ageing; the nun study.

In 1986, Dr David Snowdon, an assistant professor in epidemiology at the University of Minnesota, was looking for a research project to consolidate his position at the university. He happened to get into a conversation with a graduate who was also a nun, and she suggested that he do a research project involving the nuns at her convent in Munkato, Minn. He was reluctant at first, but was persuaded and the project that he chose was to study Alzheimers and the effects of ageing on the brain. There was only one problem; studying Alzheimers meant studying brains, which meant the participants would have to agree to donate their brains after death to the project. On the day that he went up to the convent he was very nervous, but he explained what he was doing and the possible benefits it could have. The ice was broken when one nun piped up, 'Well, he can have my brain! I won't need it when I'm six feet under!' In total, 678 nuns from seven Notre Dame convents signed up for the project. Information about keeping your brain active, the risk factor involving head injury and stroke in precipitating Alzheimers, the function of folic acid and spotting a risk before the disease starts, all come from this study.

Research into disease requires money, but it also requires the good will and generosity of research volunteers. If there is ever a cure for this wretched disease, it will be because of the goodwill of people like the Notre Dame nuns. Maybe it's time we followed their example. After all, are you going to need your brain when you're six feet under?

It's the Bed Numbers, Stupid

At the moment, I am enjoying a quiet holiday somewhere in the north of Norway. Wine is plentiful, there is snow on the ground and I have just sampled smoked lamb ribs, which is a traditional dish here at New Year. I did not intend to begin blogging again until I got back to Scotland. Then I saw this article in the Herald about an exchange between Labour and the SNP about people getting turned away from Hairmyres and Wishaw A&E. It's all the fault of the Scottish Government apparently for not putting in a £100m investment package that was planned for them under Labour's brillant plans to downgrade Monklands.

I know I shouldn't reply to this. I know I should sit back, have an extra sip of the 10 year Rioja that we're drinking just now, and let it roll over me. But it's a bit like a car crash. You know that you shouldn't slow down to look at it..but you ..just do. And this kind of blatant politicing is like an itch I can't scratch. So let's start off with an unbiased considered statment.

Labour, you are talking absolute tosh on health. You have been talking absolute tosh for the past few years on health and you have not stopped, even when everyone from Allyson Pollock to John Lister have told you so. You have been found wanting and put out of government, but like a whining child, you have always got to be right, you have always got to have the last word and the last word has always got to be abusive. You should be ashamed of yourself and you should grow up.

Now to this issue. I find it very hard to believe that Labour do not already know the answer to the question that they put to Nicola Sturgeon over A&E refusals but let me sum it up; it's the bed numbers, stupid.

When Hairmyres was rebuilt on its original site and Wishaw General was built as a new hospital, they were built under PFI. PFI is prohibitively expensive, so one of the ways of saving money is to build the hospitals smaller. This means physically less space to put beds in. Which means a reduction in beds. NHS Lanarkshire lost 300 acute beds in total across the authority. Hairmyres has been running at 99% capacity since day one (85% occupancy is considered the safe rate for turnaround to control infection) and Wishaw has had similar problems. Now, where do they send these patients when they can't admit them? Guess what, they send them to Monklands. Yes, the hospital whose A&E Labour wanted to shut. Just as well that didn't go ahead, isn't it?
We are not the only people plagued with this problem. Reduced bed numbers are a common feature of PFI hospitals, as detailed in the excellent report, 'The PFI Experience' and bednumbers have been reduced across Scotland as a whole. This makes keeping a rein on infection very difficult and it means longer waiting lists for non emergency surgery. That is the problem.

Now to this £100 million nonsense. This was money that was promised for the upgrading of primary services in Lanarkshire, for health centres, the non-existent cancer centre at Monklands and the provision of 'community casualty units in rural areas to make up for an A&E being shut. This amount went up to £300 million at one point, as protests about Monklands grew more vociferous. The trouble with the money was that it was a promise, not a reality. And long before the SNP came to power, the plans for the new mental health services and the cancer centre at Monklands were being kicked into the long grass. I doubt that there was any real intention to enact the initial plans and as the money was not ring-fenced, it would probably all have gone to the rack renting racket that is PFI. It's swallowed everything else here.

I am someone who is political. I am not usually party political; I judge policies on their merits and statements on their truthfullness. But as it is New Year I have a suggestion for a New Year resolution for Labour.

You have lost the argument on health. You have been proved wrong by the chaos that has resulted, whether that is the white elephant of Stracathro, the crippling debt of PFI, the medical training applications shambles or the IT project which has cost a fortune and doesn't work. Stop opening your mouth to let your belly rumble. Use your period in the wilderness to reflect on what you have done and show some humility. Maybe, maybe just then, you will have a useful part to play with the rest of us in picking up the pieces of the NHS, and maybe we might still have a public health service in ten years time. Indulge in the kind of sour grapes politics that this argument represents and you will stay exactly where you are and what you are; a party full of sound and fury, signifying nothing.

Right, where's the Laphroig? I need a double..`