Category Archives: Alergies

Prurience review – come and join the self-help group for porn addicts

Chris is our group leader, a sandy-haired man sporting a baseball cap and a caring smile. He wants us to talk about the first time we saw pornography. People in the circle shift uncomfortably in their seats.

Nobody wants to catch Chris’s eye. Slowly, people begin to speak. Somebody tells of finding the builders’ stash of magazines hidden in a skip, another talks of a boys-only school trip to Holland and discovering adult channels on Dutch TV. An older man, Rick, makes the point that, for his generation, a first sexual experience often came before widespread exposure to porn.

The cabaret star Christopher Green’s Prurience, originally developed with the Sick! festival, describes itself as “an experiential entertainment about porn”. But that’s not all it is. Green is testing the limits of theatre, the role of audience participation, the line between the real and fictional worlds, and just how much he can muck around with the audience’s heads. He has form in this department, most notably with The Frozen Scream, a disappointing immersive-theatre collaboration with the novelist Sarah Waters at Wales Millennium Centre in 2015.

Prurience ‘founder’ Amelia Atkins joins the session.

Prurience ‘founder’ Amelia Atkins joins the session. Photograph: James W Norton

Unlike that project, this is no horror show. Quite the contrary – it’s often very funny and genuinely discomforting, largely because the dramaturgy is much sharper and tighter. It immediately solves the crucial central problem of so much immersive theatre in justifying our presence in the piece. Punchdrunk deal with it by putting the audience in masks so we become shadows at the spectacle. In Prurience, we are all participants in an Alcoholics Anonymous-style therapy group for porn addicts founded by former porn actor Amelia Atkins (played brilliantly on film by Pippa Winslow), whose stick-on face of permanent concern makes her look as if she is suffering from a really bad case of constipation.

You leave your bag and your inhibitions at the door, stick on a name badge, help yourself to herbal tea and biscuits (“for those who haven’t yet dealt with their sugar addiction”) and allow yourself to sink into the welcoming world of self-help groups. We are invited to join in the group singalong and shut our eyes and raise our hands if we have ever run along a street for the sheer joy of it, or sat on the edge of our bed and cried. What’s fascinating is how prepared people are to play along, even though the entire thing has a lightly satirical edge. We are drawn in almost without realising it.

Soon we move on to the sharing: there’s a young biochemist who believes that his erectile dysfunction is a result of watching too much porn from the age of 11 which has shaped his neural pathways. And there’s a woman who gets off from watching gay male porn, although she draws the line at fisting because it reminds her too much of her job as a vet.

But gradually it becomes apparent from the fixed smile of Chris — played by Green himself — that there are rumblings of discontent among regular attenders at the group. What is its function? Is porn addiction a real thing? Are therapy groups such as Atkins’ Prurience merely cult-like money spinners, part of a capitalism conspiracy that on one hand sells us porn and then tries to sell us the apparent cure? Maybe porn, food, drugs and social media have simply become a substitute for the other certainties – such as faith – that we used to believe in.

Prurience shares similar territory with David Hare’s 2000 Royal Court play My Zinc Bed in the way its raises the possibility that therapy groups substitute one kind of addiction for the addiction of public confession and how it inspects whether anyone really wants to be totally cured of desire. But it is way more interesting than Hare’s play because of the way it genuinely tries to marry form and content. We are sitting in a room pretending we are in a therapy group that is discussing people’s disconnection from the real world because of porn. It’s a piece of fiction about an addiction that some scientists dispute even exists.

If you want an idea of just how discombobulating the entire experience is, suffice to say that the post-show discussion doesn’t take place where you might expect. There were a few dislocating moments when I genuinely considered the possibility that everyone in the room was an actor apart from the five people I knew.

Prurience doesn’t entirely succeed in keeping all the balls in the air, but at its fiendish, exhilarating best it makes you question not just attitudes to porn but how we experience reality.

Our public health guardians have been asleep at the wheel as vaginal mesh tragedy unfolds | Danny Vadasz

It seems inconceivable that the tragedy of failed vaginal mesh implants could have continued undetected for 16 years. And yet it did.

In fact mesh implants remained the preferred clinical procedure to deal with pelvic prolapse and urinary stress incontinence, with estimates suggesting that over 100,000 women have undergone the procedure in Australia.

Obstetricians and gynaecologists have been so confident of the outcome of these implants, they haven’t felt the need to warn their patients of the risks or that the implants are irreversible.

Even when warning signs emerged – and there were plenty of them – women suffering post-operative injury were characterised as outliers, unfortunate but rare failures in the shadows of the glowing success of the devices.

The Therapeutic Goods Administration (TGA) whose role it is to establish the efficacy and safety of medical devices recorded only 99 adverse outcomes over five years from 2012. From its perspective, this doubtlessly vindicated the claims of manufacturers and surgeons that mesh implants had enhanced the lives of thousands of women.

However we, the Health Issues Centre (HIC), repeatedly heard from women who claimed their lives had been destroyed as a consequence of these implants.

In fact it took a senate inquiry, the HIC and a network of small consumer health organisations to expose what is without a doubt the worst self-inflicted public health crisis since the thalidomide tragedy.

Over six weeks in April and May 2017, HIC conducted research to determine how many women in Australia have been adversely impacted by mesh implants. In those six weeks, we received over 2,000 survey responses and the data was horrifying: 58% of respondents claimed that the procedure failed to resolve their health concerns, with 65% describing their consequent suffering as severe (23%), debilitating (31%) or unendurable (12%). Just 35% believed they had been adequately informed of the risks and potential adverse outcomes of mesh implants.

So why were we able to identify what had evaded the guardians of our health system for so long?

Because we went looking and gave women anonymity and the opportunity to be tell us of their experiences without the added stress and humiliation of public disclosure.

Sadly much of the current debate about the extent of the problem has been framed in terms of the good outcomes of the many outweighing the unfortunate experiences of a few, with clinicians continuing to refer to mesh implants as the gold standard for dealing with incontinence and prolapse.

What they forget is that our health system is based on values such as equity and a universal duty of care, not on a cost/benefit analysis that accepts the unavoidability of collateral damage.

When a few hundred babies were born with birth defects in the 1950s as a result of thalidomide, nobody suggested this was a defensible offset against the thousands of women who had been cured of morning sickness. The product was swiftly and decisively withdrawn from use.

Perhaps we need that event to remind us of the human dimensions of the mesh implants tragedy and to ensure our sense of humanity is not subordinated to a statistical dispute over acceptable failure rates.

But beyond the personal tragedy of women whose lives have been ruined by failed mesh implants is the catastrophic system failure of the very regulatory institutions established to protect public health.

Interestingly, it was in direct response to the thalidomide crisis that the government created what would be the precursor to the TGA. The intent of the organisation was to ensure the public would never again be victims of unproven clinical treatment.

Ironically it is the TGA that has now been singled out for its failure to adequately assess mesh devices before allowing them to proliferate.

While the TGA has many questions to answer, it is not alone in failing its duty of care. Vaginal mesh implants represent a whole-of-system failure and implicates Commonwealth and state health authorities, the various state and federal complaints commissions, the large number of surgeons conducting mesh implant surgery without informed consent, and the professional associations representing these practitioners.

All these guardians of public health have been asleep at the wheel while the mesh implants tragedy has unfolded. They have collectively failed to:

  • adequately evaluate the safety and efficacy of medical devices and procedures;
  • establish a comprehensive register of mesh products and procedures;
  • provide adverse reporting systems to accurately represent health consumer outcomes;
  • act on international evidence and warnings including those of the FDA;
  • initiate the recall of products held in stock even after they have been withdrawn from market;
  • enforce adherence to the principles and practice of informed consent;
  • adopt a patient-centred approach in the treatment of affected women;
  • apply precautionary principles in the face of mounting evidence of adverse outcomes.

However the mesh implants tragedy is also indicative of a broader social and political failure. Despite the lessons we should have learned from the under-reporting of rape, domestic violence and child sexual abuse, we have yet again failed in our duty of care to protect the vulnerable.

In all of these circumstances we elect denial rather than acknowledge system failure. We diminish the tragedy by characterising the cases as exceptional, unrepresentative of typical outcomes. We put the burden of proof on the shoulders of victims who have already been shattered by their experiences. We challenge and discredit them until they doubt their own lived experience. We plead ignorance of the facts and search for convenient scapegoats. We look for closure through expressions of regret rather than genuine remorse and reform.

To rebuild trust in our safety regime, we must firstly admit that our current system has failed us, then begin the task of rebuilding a safety regime that acts decisively with foresight rather than justifying inaction in hindsight.

Half of pupils expelled from school have mental health issue, study finds

Half of all pupils expelled from school are suffering from a recognised mental health problem, according to a study.

Those who are permanently excluded find themselves at a significant disadvantage, with only one in a hundred going on to attain five good GCSEs, which are often used as a benchmark of academic success.

The majority will end up in prison, says the study by the Institute for Public Policy Research, which estimates that of the 86,000-strong prison population, more then 54,000 were excluded at school.

The IPPR says its research lays bare the “broken system” facing excluded pupils. It flags up high levels of mental health issues among permanently excluded students – at least one in two, compared with one in 50 pupils in the wider population.

The thinktank also highlights the disadvantages such children face, as those excluded are four times more likely to grow up in poverty and twice as likely to be living in care. They are also seven times more likely to have special educational needs than those who are not excluded, the report claims.

After exclusion, the study says there is a downward spiral of underachievement, with teachers in schools catering for excluded pupils twice as likely to have no educational qualifications.

Kiran Gill, an IPPR associate fellow and founder of The Difference, which works to improve mental health provision for excluded pupils, described the system as “burningly unjust”.

She said: “Theresa May says she is committed to improving the mental health of young people. Addressing the most vulnerable children being thrown out of England’s schools is a good place to start. Because unequal treatment of mental health may be an injustice, but the discrimination of school exclusions is a crime.

“If the government is serious about real action on mental health, there needs to be dedicated funding and thought through solutions rather than sticking plasters on the symptoms of the problem.”

The IPPR research was published before the government’s latest annual figures on permanent and fixed period exclusions from schools in England in 2015-16, which is scheduled to be released on Thursday.

Responding to the report, the Department for Education said any decision to exclude should be lawful, reasonable and fair, and should only be used as a last resort in response to serious breaches of a school’s behaviour policy.

“This government is committed to working with local authorities and schools to ensure children in alternative provision receive a high quality education,” a DfE spokesperson said.

“We are strengthening the links between schools and NHS mental health staff and have announced plans for every secondary school to be offered mental health first aid training. Later this year we will publish a green paper with proposals for further improving mental health services.”

  • In the UK, Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

HPV vaccine: anger over decision not to extend NHS scheme to boys

A decision not to vaccinate boys against a cancer-causing sexually transmitted infection has been condemned by health bodies and campaigners.

The Joint Committee on Vaccination and Immunisation (JCVI), which has been reviewing the human papilloma virus (HPV) vaccination programme, concluded that it was “highly unlikely to be cost-effective” to extend the scheme to include adolescent boys as well as girls.

Since 2008, all girls aged 12 to 13 are offered the HPV vaccination as part of the NHS childhood vaccination programme, and the JCVI has been considering whether to include boys on the scheme since 2014.

Up to eight out of 10 people will be infected with the virus at some point in their lives and it has been linked to one in 20 cases of cancer in the UK, according to health professionals. Campaigners have been calling for a gender-neutral approach to the vaccination, which would ensure that 400,000 school-age boys are not left at risk.

The committee, which has yet to publish its final recommendation, said in an interim statement that studies “consistently show” boys are afforded “considerable herd protection” when there is high uptake of the vaccine in girls.

Critics called the decision “indefensible”. The Faculty of Sexual and Reproductive Healthcare (FSRH), a membership body for healthcare professionals who work in sexual and reproductive health, said the decision should be reversed when the JCVI meets again in October.

Asha Kasliwal, the FSRH president, said the interim decision to deny boys the HPV vaccination was a huge missed opportunity for improving long-term sexual and reproductive health outcomes and tackling gender inequality.

Kasliwal said: “FSRH aims to improve women’s sexual and reproductive health, especially access to contraception. However, HPV affects not only women, but also men, and FSRH firmly believes that men and boys are vital in contributing to secure women’s reproductive health and rights.

“We support boys’ and men’s right to access high-quality [sexual and reproductive healthcare] services and live a life free of sexually transmitted infections such as HPV.”

Peter Baker, director of the campaign group HPV Action, said the decision was about saving money and not improving health: “It is astonishing that the government’s vaccination advisory committee has ignored advice from patient organisations, doctors treating men with HPV-related cancers, public health experts and those whose lives have been devastated by HPV.”

Baker said HPV Action would urge ministers to make the right decision and said there might also be grounds for a legal challenge on the grounds that a decision to leave boys and men at risk breaches equality law.

A recent poll conducted by HPV Action showed that 94% of GPs backed the expansion of the programme, with the same proportion saying if they had a son, they would want them to receive the vaccination. Both positions were also supported by 97% of dentists.

Mick Armstrong, the chair of the British Dental Association, said: “HPV has emerged as the leading cause of oropharyngeal cancers, so JCVI’s unwillingness to expand the vaccination programme to boys is frankly indefensible. The state has a responsibility to offer all our children the best possible defence.

“Dentists are on the frontline in the battle against oral cancer, a condition with heart-breaking and life-changing results. Ministers can choose to sit this one out, or show they really believe in prevention.”

The JCVI said: “The JCVI is consulting on its interim findings to ensure that the most appropriate and up-to-date evidence has been used, and that reasonable assumptions have been made where evidence is limited or unavailable. Once the consultation is completed, the JCVI will develop and publish its final advice.”

Arts can help recovery from illness and keep people well, report says

GPs prescribing arts activities to some ill patients could lead to a dramatic fall in hospital admissions and save the NHS money, according to a new report into the subject of arts, health and wellbeing published after two years of evidence-gathering.

The inquiry report was published on Wednesday; a huge document that includes hundreds of interviews and dozens of case studies showing how powerfully the arts can contribute to people’s health and wellbeing.

David Shrigley illustration

Illustration: David Shrigley

Co-chaired by former arts ministers Alan Howarth and Ed Vaizey, the all-party inquiry contends that the arts can keep people well, aid recovery from illness, help people to live longer, better lives and save money in health and social services.

Lord Howarth said it was a comprehensive review of evidence that had never been produced before. “Sceptics say where is the evidence of the efficacy of the arts in health? Where is the evidence of the value for money it can provide? We show it in this report.

“The arts can help people take responsibility for their own health and wellbeing in ways that will be crucial to the health of the nation.”

Art helps you see

Illustration: David Shrigley

The report was welcomed by the current arts minister, John Glen, appointed five weeks ago. He pledged to act on its recommendations, saying: “This sort of work isn’t window-dressing, please don’t be cynical about it. It gives a dataset and some real stories that we can use as we go through the treacle of Whitehall.”

The case studies include an Artlift arts-on-prescription project in Gloucestershire where patients with a wide range of conditions, from depression to chronic pain to stroke, were referred to an eight-week course involving poetry, ceramics, drawing, mosaic or painting.

A cost-benefit analysis showed a 37% drop in GP consultation rates and a 27% reduction in hospital admissions. That represents an NHS saving of £216 per patient.

The Strokestra project between the Royal Philharmonic Orchestra and Hull stroke service running a music-making service for patients

The Strokestra project between the Royal Philharmonic Orchestra and Hull stroke service running a music-making service for patients.

Strokestra, a collaboration between the Royal Philharmonic Orchestra and Hull stroke service, found that 86% of patients felt music-making sessions – which included percussion and conducting – relieved their symptoms and improved their sleep.

The report also includes contributions from artists including David Shrigley, who has provided illustrations, and Grayson Perry, who writes: “Making and consuming art lifts our spirits and keeps us sane. Art, like science and religion, helps us make meaning from our lives, and to make meaning is to make us feel better.”

Howarth said there were many examples of good practice and innovation around the UK, but also areas where little was going on.

'The arts' sun shining on a sunflower

Illustration: David Shrigley

“We are calling for an informed and open-minded willingness to accept that the arts can make a significant contribution to addressing a number of the pressing issues faced by our health and social care systems.”

The report makes 10 “modest and feasible” recommendations that would not need additional public spending or require new legislation, the report authors said.

They include setting up a philanthropically funded strategic centre to support good practice, promote collaboration and coordinate research.

There are also recommendations about politicians and policymakers from different areas working better together, something Vaizey acknowledged was an issue.

Arts minister for six years until being sacked by Theresa May, Vaizey added: “I was very conscious as a minister that I worked in a silo and it was incredibly hard to break out of that silo, incredibly hard to engage with ministers from other government departments. The arts, almost more than any sector, is a classic example where silo working does not work.”

The All-Party Parliamentary Group on Arts, Health and Wellbeing report is available here.

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust