David Mitchell: learning to live with my son’s autism | Society | The Guardian


Novelist David Mitchell looks back on the heartbreak – and joy – of learning to live with his son’s autism. Plus, an extract from the book that helped him

Source: David Mitchell: learning to live with my son’s autism | Society | The Guardian

The Secret Doctor: people would use the NHS less if they knew the true price tags


Original post from The Guardian

‘……………..

A survey shows people vastly underestimate NHS costs. If they understood the real expenditure, they might use the service more responsibly
‘There is a resounding lack of insight from a patient perspective into how much the services they receive cost.’ Photograph: Peter Byrne/PA
‘There is a resounding lack of insight from a patient perspective into how much the services they receive cost.’ Photograph: Peter Byrne/PA

I first learned about the value of equipment in my early years at A&E. A woman had a laceration to her hand and I was happily stitching away and moving on to the second pack of kit. A male nurse from Nigeria obligingly brought me what I needed but he politely commented on my liberal use. “Back home we have to make it last – we don’t have enough to waste.” That has stayed with me ever since.

Just because I can reach for whatever I need and in vast quantities does not mean I must plunder. Free at the point of care does not mean that it’s actually free, coming from the magic NHS treasure chest that just keeps on giving.

A report compiled by health and wellbeing provider Benenden concluded that on the issue of costs related to the NHS, the UK public is “grossly ignorant” and “holds a flagrantly selfish sense of entitlement when it comes to their own treatment.” Questioning 4,000 people across the UK about the costs of common procedures and treatments, the respondents put the cost of a liver transplant at £12,279 whereas it actually costs £70,000. They believed the number of annual NHS bariatric related surgeries to be about 25,000 when it is actually double that; last year it cost the NHS in excess of £25m. The average cost of a natural birth was estimated to be £1,288, when it is instead £1,824 – and that’s without any complications.

There is a resounding lack of insight from a patient perspective into how much the services they receive cost. But should they know? I think yes. Maybe it’s time to hold a national social experiment where people attending hospital are presented with a bill at the end. Not one to be paid, but certainly to be reflected on.

The system itself too needs to be held to account too. I can recall one incident when emergency social services input was required for an otherwise independent elderly woman who had broken an arm. She didn’t require an acute medical bed, just some support in her home. I applied for the care on the Friday morning and by 5pm I was told that her application had failed. I was offered the opportunity to appeal – but that would not be until the following Tuesday as it was a bank holiday. The nurse at the desk gave me a knowing smile, explaining that the patient will fail the application today, but will pass after the weekend. In the meantime she will stay in a comparatively expensive acute medical bed so the social services department don’t have to pay for the care. If this is indeed common practice then it is an example of flagrant abuse of shifting responsibilities centred on budgets.

My elderly patients tell me of times they can remember before the NHS – when calling for the doctor had to be carefully thought through because they couldn’t afford it otherwise. Of course our doors are open 24/7 and if you need us we are here. But if you could access aspects of care rather than acute services think about it. And taking a bit more self-responsibility wouldn’t hurt too.

 

 

 

Prince Charles’s ‘black spider memos’ show lobbying at highest political level


Original post from The Guardian

‘…………..By  and

Publication of 27 letters after 10-year legal battle shows heir to the throne petitioning ministers on subjects from the Iraq war to alternative therapies

Prince Charles’s 27 memos to ministers show his attempts to influence government policy. Photograph: AFP/Getty/Guardian
Prince Charles’s 27 memos to ministers show his attempts to influence government policy. Photograph: AFP/Getty/Guardian

A cache of secret memos between Prince Charles and senior government ministers has been released after a 10-year legal battle, offering the clearest picture yet of the breadth and depth of the heir to the throne’s lobbying at the highest level of politics.

The 27 memos, sent in 2004 and 2005 and released only after the Guardian won its long freedom of information fight with the government, show the Prince of Wales making direct and persistent policy demands to the then prime minister Tony Blair and several key figures in his Labour government.

From Blair, Charles demanded everything from urgent action to improve equipment for troops fighting in Iraq to the availability of alternative herbal medicines in the UK, a pet cause of the prince.

In a single letter in February 2005, he urged a badger cull to prevent the spread of bovine tuberculosis – damning its opponents as “intellectually dishonest”; lobbied for his preferred person to be appointed to crack down on the mistreatment of farmers by supermarkets; proposed his own aide to brief Downing Street on the design of new hospitals; and urged Blair to tackle a European Union directive limiting the use of herbal alternative medicines use in the UK.

The government has spent more than £400,000 on legal costs in its ultimately failed attempt to block the original 2005 freedom of information request by the Guardian journalist Rob Evans. The case was eventually decided at the supreme court and the decade-long saga involved in total 16 different judges.

David Cameron’s last government attempted to veto the release. In 2012 the then attorney general, Dominic Grieve, warned they “would be seriously damaging to his role as future monarch because, if he forfeits his position of political neutrality as heir to the throne, he cannot easily recover it when he is king”.

But following the release of the “black spider” memos – so-called because of the prince’s scrawled handwriting – there were questions on Wednesday about whether it was worth the money to try to keep secret details of his lobbying, some of which reflects Charles’s very narrow personal interests.

For example, in October 2004 he told the environment minister Elliot Morley he hoped “illegal fishing of the Patagonian toothfish will be high up on your list of priorities because until that trade is stopped, there is little hope for the poor old albatross”.

But they also cover more controversial subjects. In one memo, Charles explicitly lobbied Tony Blair when he was prime minister to replace Lynx military helicopters.

Charles complained that delays in their replacement was “one more example where our Armed forces are being asked to do an extremely challenging job (particularly in Iraq) without the necessary resources”. Blair responded that replacement would be a priority for spending.

He directly urged the health secretary, John Reid, to accelerate redevelopment at a hospital site in Sunderland in which his own architecture charity was involved, warning bluntly that “chickens will come home to roost” in Reid’s government department if action was not taken.

The letters revealed not only that ministers often responded actively to his suggestions but they appeared to hold his interventions in high regard.

Blair replied to him in one letter: “I always value and look forward to your views – but perhaps particularly on agricultural topics.”

After Charles Clarke, then education secretary, responded to Charles’ complaint about the nutritional content of school meals, he signed off: “I have the honour to be, Sir, Your Royal Highness’s most humble and obedient servant.”

The memos also reveal how dogged Charles can be in demanding actions from ministers as it emerged that his engagement with key political players has not abated. Since the beginning of 2010, the prince held 87 meetings with ministers, opposition party leaders and top government officials, new figures release by the campaign group Republic showed. This year he has held meetings with, among others, David Cameron, the Scottish National party leader, Nicola Sturgeon, the education secretary, Nicky Morgan, and Alistair Carmichael, then Scotland secretary.

https://embed.theguardian.com/embed/video/uk-news/video/2015/may/13/prince-charles-black-spider-letters-release-video

The letters emerged amid growing signs that Prince Charles is planning to rule in a far more outspoken way than the taciturn Queen. Allies told the Guardian last year he planned “heartfelt interventions” in national life, while in 2013 his friend and biographer Jonathan Dimbleby said: “A quiet constitutional revolution is afoot.”

But this is likely to be the only glimpse the British public gets of Charles’ correspondence with ministers. Since the original Guardian request to see the letters the government has tightened up the Freedom of Information Act to provide an “absolute exemption” on all requests relating to the Queen and the heir to the throne.

Paul Flynn, a Labour MP and member of the political and constitutional reform committee, said the letters lifted the lid on the activity of the “the lobbyist supreme in the land”.

“They show he is putting forward a whole variety of views – including many bad science views and others that should have no more weight than the man down the pub,” he said. “We can see his views were given a seriousness and priority they did not deserve.”

Prince Charles was said to be “disappointed” the principle of confidentiality had not been maintained, and his spokeswoman said publication “can only inhibit his ability to express the concerns and suggestions which have been put to him in the course of his travels and meetings”.

But aides argue the letters do not show the prince engaging in matters of party political contention, implying they do not breach the principle of political neutrality.

“The letters published by the government show the Prince of Wales expressing concern about issues that he has raised in public,” his spokeswoman said. “In all these cases, the Prince of Wales is raising issues of public concern, and trying to find practical ways to address the issues.”

But the Guardian’s editor-in-chief, Alan Rusbridger, said: “We fought this case because we believed – and the most senior judges in the country agreed – that the royal family should operate to the same degrees of transparency as anyone else trying to make their influence felt in public life. The attorney general, in trying to block the letters, said their contents could ‘seriously damage’ perceptions of the prince’s political neutrality.

“Whatever the rights and wrongs of that assessment, it is shocking that the government wasted hundreds of thousands of pounds of public money trying to prevent their publication. Now, after 10 years, we are pleased to be able to share the contents of his correspondence and let people draw their own conclusions.”

Graham Smith, chief executive of Republic, which campaigns for an elected head of state, said: “These letters are only a small indication of widespread lobbying that’s been going on for years. We now need full disclosure and an assessment of his impact on government policy.”

Maurice Frankel, director of the UK Campaign for Freedom of Information, said: “The release of the Charles memos represents a major victory for the freedom of information process, showing that ministers cannot block disclosure simply because they don’t like the result.”

Michael Meacher, a former Labour environment secretary who received private letters from Charles about policy, called for a new system of transparency around his correspondence with ministers when he becomes king to “remove public suspicion from the process”.

“A brief statement would be made when the king has written to a minister and the subject would be obvious,” he said. “At least we would know he has been giving his opinions and, some would say, lobbying ministers.”

Autism and ill health: how to spot the subtle signs that something is wrong


Original post from The Guardian

‘………..By Saskia Baron

People with autism and learning disabilities can die up to 20 years prematurely. So how can we help carers and health workers diagnose illness in non-verbal patients?

 An image from the Books Beyond Words series. Photograph: Lisa Kopper
An image from the Books Beyond Words series. Photograph: Lisa Kopper

“Oh, he’s been so brave and good. He’s not made a fuss at all.” That’s what the well-meaning care worker said about my autistic older brother after he broke his nose in an epileptic seizure some years ago. Except that Timothy wasn’t being brave or good – he’s just not able to tell us when something is wrong; he doesn’t have the words for it. Like a third of people on the autistic spectrum, my 58-year-old brother has very limited verbal communication. He can speak, but usually only when prompted, and in learned, short phrases or single words. And like the majority of people with autism, he has unusual sensory responses. We suspect that he doesn’t feel pain in quite the same way we do.

There is a saying that when you’ve met one person with autism, you’ve met one person with autism – it is notoriously hard to generalise about a condition that takes in such a wide spectrum, from the highly intelligent but socially awkward adult to the profoundly learning-disabled child who will need lifelong support. But there are certain health issues that crop up so often that all those with autism, their advocates and medical professionals need to be aware of them.

Many are hypersensitive and react excessively to even the lightest touch and smallest discomfort; others, such as Timothy, are hyposensitive and symptoms of quite major problems go unnoticed. You have to know him well, spot small behavioural changes and explore the reasons for them. Recently, the very conscientious manager of Timothy’s home got in touch because he was agitated and slapping his face. We thought he might be mimicking someone at his day centre, but asked her to take him to his GP and dentist. Sure enough, he had an infected root canal that needed treatment. A course of antibiotics, and he is happy again.

These days, Timothy lives with observant staff who know him well and pick up the subtle signs if something is not right. But, sadly, not everyone on the spectrum has people watching out for them, especially when they are adults and don’t live with their families. Poorly trained and poorly paid careworkers don’t stick around long enough to get to know the people they are supporting intimately, and neglect happens all too often.

There are hardly any long-term studies of people with autism as they age, but US research has estimated that life expectancy is far shorter for them than for their unaffected siblings or cousins – especially if they have learning difficulties as well. On average, people with autism and learning disabilities die between 10 and 20 years prematurely.

Despite campaigns by Mencap and increased awareness, Dr Pauline Heslop, the lead author of a groundbreaking UK study into premature deaths, said: “The unacceptable situation remains that for every one person in the general population who dies from a cause of death amenable to good healthcare, three people with learning disabilities will do so.” Among Timothy’s peers, we know of several who have died too young when cancers have progressed unnoticed, or when their unchecked consumption of water, food or non-food items has led to catastrophic ill health. Meanwhile, epilepsy affects 20-40% of people with autism and is one of the major causes of premature death, along with respiratory, cardiac and dysphagia disorders. While articulate autistic adults can face troubling health problems too, these issues can be a particular cause of concern for people who can’t speak for themselves.

All too often, medical professionals are inexperienced around autistic non-verbal adults and don’t know that their behaviour may be a form of communication. They sometimes dismiss their actions as a quirky autism trait. Jim Blair, a consultant learning disability nurse, campaigns for better treatment of adults and children with learning disabilities in hospitals. Currently, fewer than half of hospitals in the UK have a learning disability nurse on staff. In the past, Blair has worked with doctors who see a non-verbal patient banging their head against a wall and write it off as “habitual autistic behaviour”, rather than investigating whether the patient is in pain and is trying to blot it out by head-banging.

Heslop would like to see learning disability nurse specialists working across GP practices, advising and training medical staff and carers. She believes that good-quality health checks and prevention work – not just box-ticking exercises where forms are filled in then forgotten in a drawer – could lead to far fewer people with autism needing hospital care and dying prematurely.

In recent years, some excellent resources have been created, such as the Books Beyond Words series that explain health problems in pictures. Visual pain scales(smiley to sad faces) and the videos and photo-stories on the Easyhealth site(designed by the learning disability charity Generate) can also help non-verbal communication.

Campaigners such as the National Autistic Society encourage the use of health or hospital “passports”. These are personalised documents that accompany someone with autism who can’t speak for themselves. They give vital personal history, medical information, sensory idiosyncrasies and advice on how the patient might behave if stressed by their surroundings or illness. Many health workers find the passports very useful when faced with a new patient with baffling behaviour and no speech, but there are also reports of the documents being ignored by busy professionals who think they do not have time to read them. There is no statutory obligation to take account of a health passport.

There is a very convincing argument that the main reason autism rates have risen to one in 100 in recent years is because of growing awareness of the diversity of autism, leading to many more diagnoses. But diagnosis is just the beginning – in order for people such as Timothy to have a long, happy life, we need greater awareness not just of autism, but how it can affect overall health.  ……’