Tag Archives: process

Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

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Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

Death and the cruel process that follows | Letters

Annalisa Barbieri was lucky to have been able to keep her father at home for 11 hours after he died (Family, 6 January). I found my mother (aged 90) who had died in her sleep at home. Not knowing what to do, I rang her GP. This started a legal process that whisked her body away before I had time to say goodbye. Because she did not die in hospital or hospice and hadn’t seen her GP in the last two weeks, the GP was required to contact the police, who had to come and keep guard on the body until the undertakers came to take it away, I assume in case she’d been murdered. They couldn’t even wait for my sister to arrive to see my mother dead in her bed.

If I’d been warned that this would happen, I would have spent an hour or two quietly with my mother’s body before I rang the GP.

It would be good to publicise this system so that others don’t have the same experience. Everyone was kind, but the process is cruel.
Christine Holloway
Winchester

Join the debate – email guardian.letters@theguardian.com

Read more Guardian letters – click here to visit gu.com/letters

I had chronic fatigue syndrome. The Lightning Process at least offers hope | Vonny Leclerc

She thought I was dead. You come home, call out, no answer. You walk in to find your 16-year-old crumpled on the dining-room floor. Drugs? Alcohol? It’s a leap the brain makes. Being so tired that they collapsed on the spot doesn’t feature. Months later, after all but abandoning school, I was told it was myalgic encephalopathy (ME), more commonly known as chronic fatigue syndrome (CFS). It was a diagnosis that felt like little more than a question mark. I’ve long since recovered, but I’m still frustrated by the lack of options for sufferers. How long will they have to wander this wasteland of unanswerables?

But there is perhaps a glimmer on the horizon. A small trial has shown that a commercial therapy called the Lightning Process helped speed up recovery for some youngsters. Though experts have dismissed it as junk science based on the shonky, largely debunked theory of neuro-linguistic programming, there’s a website full of testimonies, and celebrity endorsements. The whole thing has a cult-cum-televangelist piquancy that would crinkle the nose of most sceptics.

But the internet is febrile with discussion – especially now there’s been a positive result. CFS is poorly understood, so near-impossible to treat effectively. This therapy – however tenuous a hope – looks like a lifeline; if I’d been given the chance to try it, I would have. In fact, I’d have had to, because doctors offered me no help other than the name of the ME Association scribbled on a Post-it.

So much of CFS management comes down to personal experimentation informed by anecdote. Being a teenager is a multiplier for despair – it’s no wonder young people are clamouring to try the Lightning Process. Not knowing what was going on or how to make it better was torture, so I tried anything – acupuncture, homeopathy, acrid aloe vera shots. I needed some hope that my situation might improve.

I was born in 1987, the year “yuppie flu” made it into the dictionary; 16 years on, when I developed it, the label still clung. CFS arrives bound in its own mythology, and I didn’t have the energy or enough good information to protest about its dismissal. If the professionals couldn’t explain it, how could I? I’d become the class basket case. At 15, I was a straight-A student heading for law school. Then a mild virus became an ellipsis, a long drawn-out syllable of thing. At 16, fatigue set down roots, and my immediate future clouded over. My life slipped into slo-mo, while those of my peers’ gathered pace. Boys. Girls. Drinking. Sex. Adventures. They dipped digits in adulthood, while most days my toes never made it past the duvet.

I missed my higher maths class – that is a measure of how far I’d slipped out of reality. I was living an adjacent life of the teenage recluse. Deciphering class notes in bed, trying to cheat tiredness with Red Bull, lying on the floor drawing blue pastel hands so I wouldn’t fail art. One friend would visit, climb into my bunk, and just lie with me. CFS changed everything.

Then there was the aching, the dizziness, and the thick, milky cataract that grew over my mind. I remember lying in bed thinking about Slaughterhouse-Five, about the sybaritic pleasure of reading, picking out phrases I could recall: “Everything was beautiful and nothing hurt.” I ached to luxuriate in words, my now inaccessible refuge. Reading was like catching water in your hands; the words pooled for a moment, then slipped and were gone. I could do without boys if I could have books. It seemed unreasonably cruel to be denied both.

On one of the rare days that I’d managed to make it into school, a teacher pulled me aside, recognising that I was lost. He had wandered the same desert, thirsty for a cure. I leaned on the bench because standing was impossible, and he confided in me. It was an adult conversation, nothing about school work, just the honest dispatches from one sufferer to another. He’d tried a raw food vegan diet and pulled himself back to health. This was a man of science trading in folk remedies and Chinese whispers because to linger in the nothingness would have consumed him. We have to engineer our own coping mechanisms, because they are all we have while we wait for medicine to catch up. I went home and gave up meat.

If the Lightning Process, working alongside medicine, has shown results, it’s worth investigating. Young people with CFS need something to keep the flame of hope alive. They can’t sit around waiting for medicine to figure it out, while they, on the brink of everything, desperate to join the rank and file of carefree teens, can do nothing. It’s indescribably distressing to watch friends blossom into adulthood while you’re shoved into stasis by a mystery illness. They party while you sleep. They learn to drive while you sleep. They fall in love while you sleep.

ME is so much more than the symptoms – the truly devastating thing about it is how it makes you feel about yourself, as anxiety, depression and illness blight your “best years”. If this therapy can help stop the slow creep of hopelessness, or the submission to a condition, then it’s worth trying. Can you think yourself well? Maybe not. But the placebo effect is a powerful thing and believing there was a chance of getting well, even for a while, would have kept me afloat when I felt I was drowning.

Vonny Leclerc is an arts journalist and social activist

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Controversial Lightning Process ‘helps children with chronic fatigue syndrome’

A controversial treatment for chronic fatigue syndrome (CFS) called the Lightning Process can help children get better, a trial has shown, much to the surprise of the doctor who put it to the test.

One in every 100 children of secondary school age has CFS, also known as ME, and it can wreck their lives. Those affected miss a year of school on average, many of them getting to classes on just two days a week. Half are bedbound at some stage.

Esther Crawley, a paediatrician and professor of child health at Bristol University, runs the biggest centre for children with CFS in the country, seeing about 400 patients a year. She embarked on a trial of the commercial Lightning Process because the children she cares for and their parents were interested in it.

“Every single week in my clinic, children came up to me and said we want to know about the Lightning Process. People have told us to try it. Should we have it?” she said. “It was fascinating at the time. We heard about people getting better and people getting worse. I was kind of curious. I never expected that it would work.” If anything, said Crawley, she set up the trial in a way that would make it harder for it to be shown to work.

The Lightning Process is a commercial programme, developed from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. The course costs around £620. It is billed as training rather than therapy and lasts three intensive days.

The trial was relatively small – 100 young people aged 12 to 18 took part, half of whom had the usual treatment that Crawley’s team at Bristol’s Royal United Hospital give patients, while the other half had that plus the Lightning Process training as well.

Results published in the journal Archives of Disease in Childhood show that children who went through the Lightning Process programme were doing better than the others at six months and had improved still more by 12 months. Physical function, fatigue, anxiety and depression all improved more in the Lightning Process group. Those with the usual treatment – which includes improving sleep, exercise management and sometimes cognitive behaviour therapy – were spending more time in school at the end of a year, up to three days a week. Those who had the Lightning Process as well were in school four days a week.

“There are a lot of limitations,” said Crawley. “The main thing is to be absolutely clear to families that we don’t know if the Lightning Process works on its own. I’m not advocating people go out and get the Lightning Process. And we don’t know if it works for adults and we don’t know if it works for primary school-age children.”

The nature of the course put off many children from taking part in the trial. It involves three intensive days in a group of other CFS sufferers, which is hard for patients to contemplate. But, Crawley said, “This is a good news story.” More studies are needed before it can be considered by the NHS, but it offered real possibility for some children.

The Lightning Process was developed by osteopath Phil Parker in the late 1990s and is offered for a range of conditions. Its use in CFS has been controversial among those highly vocal activists who resist any attempt to suggest the disease is psychological rather than physical. Parker claims that the Lightning Process works by teaching people to use their brain to “stimulate health-promoting neural pathways”.

Those who have been through it say they are taught that negative thoughts and emotions can affect their body’s health. In the only other study done on the process, an analysis of the experiences of a handful of young people from the Harvard School of Public Health, one described using a physical gesture to stop the negativity of the mind. “Whenever you get a negative thought, emotional symptom, you are supposed to turn on one side and with your arm movements in a kind if stop motion, just say STOP very firmly and that is supposed to cut off the adrenaline response,” the young patient said.

Crawley says CFS is caused by a biological response, usually to a viral trigger. Children can be genetically susceptible and do not recover fully after an infection. “CFS is really common and uses up vast amounts of NHS resources,” she says.

But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better. Crawley was attacked for launching the latest trial, as she has been in the past.

“At medical school people are told not to go into [CFS]. As researchers they are told not to go into it because you get so much abuse,” she said. “We still have a condition which is really common and really disabling and children begging for treatment and begging for answers, but people won’t go into it.

“When I think about leaving, which I do a lot, I think about the children who come to my clinics who have miserable lives because current treatment is not effective enough. We have to do research.”

The ME Association said it had “spoken out robustly” about the trial since it first heard about it in 2010. It said it believed such a trial in children was unethical.

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS,” said its medical adviser, Dr Charles Shepherd.

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the Lightning Process believe that they are able to quickly increase their physical and mental activity levels. However, this is can be followed by a relapse or significant worsening of symptoms.

“Others who have gone through the Lightning Process treatment report that they have spent huge amounts of money with no obvious benefit.”

Despite Charlie Gard’s tragic story, we must respect the process of our courts | Ian Kennedy

No one can be other than deeply moved by the sad story of Charlie Gard. His short life has been one of illness and suffering. His parents have lived every hour of the past 11 months with the nightmare that is every parent’s worst fear – what’s going to happen to Charlie?

It is common, but glib, to talk of Charlie Gard as a “case”; he is not a case, he’s a very sick, terminally ill little boy with a rare genetic condition and consequent brain damage. But he has also become a “case” – challenging us how to respond to his condition; a case that has attracted worldwide attention. His parents, his doctors and nurses and Great Ormond Street hospital have found themselves in a maelstrom of opinion, concern and worse, stretching from the White House to the Vatican.

Amid the grief and sadness, there is, however, a value, indeed a need, to stand back and think about what we can learn. Around 20 years ago, I was just about to leave for the airport in Auckland when I got a call from some lawyers. It was 7am. Would I meet them urgently in half an hour to advise on a case? I said of course, provided I could catch my plane.

A boy had suffered a catastrophic injury while being operated on: his neck had been broken. Though alert and talkative, he was paralysed. His parents had told his doctors that they wanted care to be withdrawn (he was on a ventilator) so that he could die peacefully. He wasn’t terminally ill, but they thought it best given what the future would hold.

There was no precedent in New Zealand. My advice was that the parents’ views were not the last word; the lawyers should go to court, ensure that the child was separately represented by a lawyer, and that the only question for the court was what was in the child’s best interests. The advice was followed. The child was made a ward of court, was cared for and lived on.

I’m sure that those who have involved themselves in the case of Charlie Gard would applaud what happened in Auckland. But if they do, they would also have to acknowledge a number of things that have been part of our approach to the care of children since the 19th century. The first is the most fundamental: as a society, we must choose how to decide such heartbreaking cases. Of course each child is different, but do we accept that there should be principles and rules, whatever the circumstances, that guide us as we try to work out what’s best? We can, of course, reject such a view and choose to go with the heart and emotions. But if we do, whose heart should prevail when there are conflicting views? Where there is conflict, how do you resolve it? Alternatively, we can reason our way through, cold as this may appear. We can accept the idea of principles and rules. And, if reason is to prevail, you need to analyse how to proceed.

These are the steps. The first is to recognise that children do not belong to their parents. Second, when a claim is made that parents have rights over their children, it is important to step back and examine the language used. We need to remind ourselves that parents do not have rights regarding their children, they only have duties, the principal duty being to act in their children’s best interests. This has been part of the fabric of our law and our society for a long time. Third, if we are concerned with the language of rights, it is, of course, children who have rights; any rights that parents have exist only to protect their children’s rights.


Parents cannot always be the ultimate arbiters of their children’s interests

Now, in giving effect to a child’s rights, the parents’ views as to their children’s interests should usually be respected. But parents cannot always be the ultimate arbiters of their children’s interests. If parents, for example, insist on subjecting their child to a particular diet that, in the view of others with acknowledged expertise in the subject, will cause the child harm, we do not stand by. We intervene to safeguard the child.

When such concerns arise, there has to be a mechanism to decide the circumstances in which parents’ views should not prevail. That mechanism has to be a trustworthy and independent source of authority, sometimes a local authority, but ultimately, as ever in a civic society, a court. The court’s sole concern must be, can only be, for the child and the child’s interests. Evidence and views, particularly those of the parents, must be listened to. The court must then decide and, crucially, make its decision and reasoning public, exposing it to scrutiny and holding it to account. The court is not infallible. That’s why we allow for appeals; a kind of second thought. But, ultimately, we are not in the realm of there being a right answer. We are in the realm of judgment, reasoned judgment, and we look to the courts to provide this.

This process depends of course on acceptance of the supremacy of reasoned argument over passion and the acceptance of the independence and authority of the courts. Campaigns against the courts, whether led by tabloid newspapers, organised through social media or exploited by sectional and religious groups, are increasingly a feature of modern discourse. It is one thing to comment on or criticise a particular decision. It is a very different thing to attack the institution of the courts.

Here, in Charlie Gard’s case, the call has been to keep the courts out; they don’t understand. Only the parents should decide: let passion prevail. Those behind such calls should reflect on what they wish for in case they get it. A whole system designed to address dispassionately the rights and interests of children would be pushed aside. And perhaps they should think of that little boy in Auckland.

Despite Charlie Gard’s tragic story, we must respect the process of our courts | Ian Kennedy

No one can be other than deeply moved by the sad story of Charlie Gard. His short life has been one of illness and suffering. His parents have lived every hour of the past 11 months with the nightmare that is every parent’s worst fear – what’s going to happen to Charlie?

It is common, but glib, to talk of Charlie Gard as a “case”; he is not a case, he’s a very sick, terminally ill little boy with a rare genetic condition and consequent brain damage. But he has also become a “case” – challenging us how to respond to his condition; a case that has attracted worldwide attention. His parents, his doctors and nurses and Great Ormond Street hospital have found themselves in a maelstrom of attention, opinion, concern and worse, stretching from the White House to the Vatican.

Amid the grief and sadness, there is, however, a value, indeed a need, to stand back and think about what we can learn. Around 20 years ago, I was just about to leave for the airport in Auckland when I got a call from some lawyers. It was 7am. Would I meet them urgently in half an hour to advise on a case? I said of course, provided I could catch my plane.

A boy had suffered a catastrophic injury while being operated on: his neck had been broken. Though alert and talkative, he was paralysed. His parents had told his doctors that they wanted care to be withdrawn (he was on a ventilator) so that he could die peacefully. He wasn’t terminally ill, but they thought it best given what the future would hold.

There was no precedent in New Zealand. My advice was that the parents’ views were not the last word; the lawyers should go to court, ensure that the child was separately represented by a lawyer, and that the only question for the court was what was in the child’s best interests. The advice was followed. The child was made a ward of court, was cared for and lived on.

I’m sure that those who have involved themselves in the case of Charlie Gard would applaud what happened in Auckland. But if they do, they would also have to acknowledge a number of things that have been part of our approach to the care of children since the 19th century. The first is the most fundamental: as a society, we must choose how to decide such heartbreaking cases. Of course each child is different, but do we accept that there should be principles and rules, whatever the circumstances, that guide us as we try to work out what’s best? We can, of course, reject such a view and choose to go with the heart and emotions. But if we do, whose heart should prevail when there are conflicting views? Where there is conflict, how do you resolve it? Alternatively, we can reason our way through, cold as this may appear. We can accept the idea of principles and rules. And, if reason is to prevail, you need to analyse how to proceed.

These are the steps. The first is to recognise that children do not belong to their parents. Second, when a claim is made that parents have rights over their children, it is important to step back and examine the language used. We need to remind ourselves that parents do not have rights regarding their children, they only have duties, the principle duty being to act in their children’s best interests. This has been part of the fabric of our law and our society for a long time. Third, if we are concerned with the language of rights, it is, of course, children who have rights; any rights that parents have exist only to protect their children’s rights.


Parents cannot always be the ultimate arbiters of their children’s interests

Now, in giving effect to a child’s rights, the parents’ views as to their children’s interests should usually be respected. But parents cannot always be the ultimate arbiters of their children’s interests. If parents, for example, insist on subjecting their child to a particular diet that, in the view of others with acknowledged expertise in the subject, will cause the child harm, we do not stand by. We intervene to safeguard the child.

When such concerns arise, there has to be a mechanism to decide the circumstances in which parents’ views should not prevail. That mechanism has to be a trustworthy and independent source of authority, sometimes a local authority, but ultimately, as ever in a civic society, a court. The court’s sole concern must be, can only be, for the child and the child’s interests. Evidence and views, particularly those of the parents, must be listened to. The court must then decide and, crucially, make its decision and reasoning public, exposing it to scrutiny and holding it to account. The court is not infallible. That’s why we allow for appeals; a kind of second thought. But, ultimately, we are not in the realm of there being a right answer. We are in the realm of judgment, reasoned judgment, and we look to the courts to provide this.

This process depends of course on acceptance of the supremacy of reasoned argument over passion and the acceptance of the independence and authority of the courts. Campaigns against the courts, whether led by tabloid newspapers, organised through social media or exploited by sectional and religious groups, are increasingly a feature of modern discourse. It is one thing to comment on or criticise a particular decision. It is a very different thing to attack the institution of the courts.

Here, in Charlie Gard’s case, the call has been to keep the courts out; they don’t understand. Only the parents should decide: let passion prevail. Those behind such calls should reflect on what they wish for in case they get it. A whole system designed to address dispassionately the rights and interests of children would be pushed aside. And perhaps they should think of that little boy in Auckland.