Category Archives: Heartburn

NHS cash squeeze forces hospitals to postpone non-urgent operations

The NHS is under fire for forcing patients who need surgery to wait at least three months before they can have an operation in order to save money.

NHS clinical commissioning groups (CCGs) in Lincolnshire have provoked sustained criticism after deciding to introduce minimum waiting times for non-urgent surgery including cataract operations and joint replacements.

They have adopted the policy as a result of the NHS-wide cash squeeze and also because they insist that some patients’ condition clears up while they wait.

A Liberal Democrat MP, Norman Lamb, a former health minister, said the move was “a shameful indictment of the under-funding of the NHS” that would prove unfair and divisive. “It undermines the core principles of the NHS: that everyone should get compassionate treatment, as early as possible, when they need it. Those who can afford it will go private to skip the wait, while others will be left waiting in pain and discomfort. This is simply impossible to justify.”

Trafford CCG in greater Manchester has confirmed that it is also considering bringing in a similar policy, according to the Health Service Journal (HSJ), which first reported on the plans.

NHS England oversees all 209 CCGs which between them spend over £60bn of the NHS’s £125bn annual budget. It appeared to back minimum waits, despite the controversy they have aroused.

A spokesman for NHS England said that with health budgets so squeezed that NHS bodies face “difficult choices” about what they spend their money on. However, there are doubts about whether it is legal for any CCG to bring in minimum waits for care, given that patients are supposed to be guaranteed in the NHS constitution that they will be treated as soon as possible.

Lincolnshire West CCG told HSJ that it had “a responsibility to ensure public money is spent effectively and efficiently”. It added that “there is evidence that some conditions do get better over time and that, in some cases, surgery may be unnecessary” though did not specify to which conditions it was referring.

The commonest non-urgent operations hospitals perform include removal of cataracts, replacement of a worn-out hip or knee and the repair of a hernia.

The Royal College of Surgeons (RCS) said making patients wait at least 13 weeks for treatment was “arbitrary” and “ethically wrong” because patients would suffer.

Sue Hill, the college’s vice-president, said: “We strongly urge all these CCGs to reconsider this decision. Patients in Trafford currently wait an average of 7.2 weeks for any type of treatment. If this policy were to go ahead average waiting times in Trafford would double and it is difficult to see how these targets coud be achieved.”

While the RCS appreciates the severe financial pressures facing CCGs, “introducing an arbitrary minimum waiting time for surgery is unlikely to save money in the long-term and is ethically wrong. Delaying surgery can mean a patient’s condition worsens, and can make surgery more difficult and less successful,” added Hill.

Cambridgeshire and Peterborough CCG was the first to bring in minimum waits for non-urgent surgery, also for 12 weeks. But it recently abandoned the policy two months after it was brought in.

Minimum long waits for treatment were banned when the coalition was in office through a ruling in 2011 by the now defunct Cooperation and Competition Panel. However, it appears that that applied only to primary care trusts, which CCGs replaced, and not to CCGs, which hold the NHS budget across England.

Jon Ashworth, the shadow health secretary, urged the government to prevent NHS bodies from using the tactic. “I’m demanding Jeremy Hunt intervenes, enforces the NHS constitution and bans these minimum waiting times. Secondly, in the budget Theresa May must provide the NHS with the money it needs to end this postcode lottery of care that has developed under the Tories.”

An NHS England spokesperson said: “CCGs face difficult choices about what can be afforded within the funds parliament has made available, recognising the priority being accorded to emergency care, mental health, cancer and GP services. Last month 1.3 million patients started consultant-led elective treatment and the vast majority of patients wait less than 18 weeks.”

Anger after report finds birth defects not caused by hormone pregnancy tests

A hormone pregnancy test used in the 1960s and 1970s was not responsible for serious birth defects, according to an official review, which has been severely criticised by campaigners.

An expert working group set up by the Commission on Human Medicines (CHM) concluded there was no “causal association” between a drug called Primodos and severe disabilities in babies.

However, MPs and families who have campaigned against hormone pregnancy tests (HPTs) for more than 40 years, said the report was a whitewash.

Yasmin Qureshi, the MP for Bolton South East, said there should be a judicial review or a separate inquiry to examine allegations of a cover-up by medical regulators at the time.

The Labour MP said: “I am completely disgusted by the report. They clearly have not looked at the evidence that was presented to them. If they had looked at the evidence presented to them they could never have arrived at the conclusion they have now. This report is a complete whitewash. It is not worth the paper it has been printed on.”

Mims Davies, the Conservative MP for Eastleigh, said she was disappointed by the report and would be meeting with the prime minister to raise her concerns.

Davies said: “I was thoroughly dissatisfied by the complete lack of transparency in the creation and preparation of this report, with the only representative of campaigners against these historic injustices on the panel being gagged by a confidentiality agreement and prevented from speaking about the report’s preparation.”

The expert group recommended that families who took an HPT and experienced an “adverse pregnancy outcome” should be offered genetic testing to establish whether there was a different underlying cause.

Campaigners believe that as well as causing disabilities, the drugs could also cause miscarriage or stillbirth.

Marie Lyon, chair of the Association for Children Damaged by Hormone Pregnancy Tests, said: “It’s truly shocking and I am appalled by the report. We all feel betrayed, and I feel like I have no faith in government health agencies now. I am distraught for our members, who still haven’t had the answers they need.”

Charlotte Fensome, whose brother Steven has severe epilepsy, said she was horrified by the report.

“I’m obviously hugely disappointed by this report. My parents are 81 and 76, and they are struggling every day with my brother. Every victim of Primodos is a personal tragedy, and I am shocked at how this investigation has been carried out.

“My mother was given Primodos when she was eight weeks pregnant, and my brother was born with severe brain damage. It affects the whole family every single day. This is just a battle, and there is a long war ahead.”

The expert group assessed a number of studies looking at a possible link between women given an HPT to diagnose pregnancy and congenital anomalies in babies, but concluded there was no connection.

The expert group found that “although there was never any reliable evidence that HPTs were unsafe, concern about this issue, coupled with the development of better pregnancy tests” led to the use of HPTs being restricted in the 1970s.

A 1967 report found there might be a link between HPTs and spina bifida, and – following the thalidomide scandal which had recently led to that drug being withdrawn – concerns about HPTs rose dramatically.

Primodos, which was also used to treat menstruation problems, was then withdrawn completely in 1978. “Whether these precautionary actions were sufficiently timely became a subject of controversy,” noted the report.

Modern pregnancy tests measure hormone levels in a woman’s urine. The older HPTs contained synthetic versions of two hormones found naturally in the body. Two pills were taken on consecutive days, with a withdrawal bleed a few days later in those who were not pregnant.

Primodos contained synthetic versions of progesterone and estrogen.

Prof Stuart Ralston, the chair of the CHM, said: “This was a comprehensive and wide-ranging scientific review of all the available evidence on the possible association between HPTs and birth defects by internationally leading experts across a broad range of specialisms.”

Dr Ailsa Gebbie, the chair of the expert working group, said: “Our recommendations will strengthen further the systems in place for detecting, evaluating and communicating risk with use of medicines in pregnancy and help safeguard future generations.”

A spokeswoman for Bayer AG, which acquired Primodos manufacturer Schering in 2006, said: “Bayer notes that a review by an independent expert working group on hormone pregnancy tests of the Commission on Human Medicines has found, consistent with Bayer’s view, based on all available data, that the scientific evidence does not support a causal association between the use of hormone pregnancy tests, such as Primodos, and birth defects or miscarriage.”

Long NHS delays can be ‘devastating’ for patients with eating disorders

People with an eating disorder are waiting as long as five years to start treatment on the NHS, putting their recovery in peril, according to a report.

Beat, a charity which helps people suffering from anorexia and bulimia, warns that delays to access vital care can have a “devastating” impact on those with eating disorders.

It stresses that while the five-year wait was a one-off, too many patients are waiting too long to see a specialist, despite recent efforts by the NHS to provide more services and cut waiting times.

Patients wait on average six months after first visiting their GP about their condition before they start treatment, it said. Some have been made to wait as long as that – 26 weeks – just to have the appointment at which they are assessed, after being referred for help by their GP.

And it can then take as much as 13 weeks after the assessment appointment before they see a psychiatrist who specialises in treating eating disorders, Beat said.

Its findings are based on the experiences of 1,478 patients who responded to a survey the charity undertook.

“The impact of having to wait a long time before receiving treatment can be devastating for eating disorders sufferers and their families,” said Andrew Radford, Beat’s chief executive.

“Eating disorders are serious, complex mental illnesses and early intervention is key to recovery. All evidence tells us the sooner someone with an eating disorder gets the treatment they need, the more likely they are to make a full and sustained recovery,” he added.

Around 725,000 people in the UK are estimated to have an eating disorder, and the conditions cost the NHS about £4.6bn a year to treat. Almost 90% of sufferers are young girls or women.

It takes on average three and a half years between symptoms emerging and the sufferer starting treatment, with the gap among adults seeking help double that found in children. People typically take over 18 months to realise they have a problem and then more than a year before they seek help, Beat found.

Under NHS England waiting times targets for eating disorders, under-18s who are classed as an emeregncy should receive treatment within 24 hours, urgent cases should be seen inside a week and non-urgent cases within four weeks.

Barbara Keeley, Labour’s shadow cabinet minister for mental health, said that official waiting times performance figures showed that many young patients were still not receiving timely care.

Between July and September, 29% of urgent cases did not start treatment within a week and 17.6% of patients did not begin routine treatment within four weeks.

“This [Beat] report suggests that Tory ministers need to snap out of their complacent attitude to the treatment of eating disorders. It is yet more proof that warm words from the Tories haven’t been met with firm action to improve services in the community,” Keeley said.

Research by Labour found that a few NHS mental health trusts have reported worryingly long waits for children and young people with eating disorders.

Tees, Esk and Wear Trust reported eight urgent cases who had waited over four weeks, five of whom waited over 12 weeks, and 44 routine cases who had waited longer than 12 weeks.

Avon and Wiltshire Trust had five urgent cases waiting four to 12 weeks and 13 routine cases in which those involved had waited over 12 weeks.

Dr Marc Bush, YoungMinds chief policy adviser, said: “Sadly, these figures chime with what we hear on our helpline, from worried parents who are desperately trying to get support from child and adolescent mental health services.”

Bush added: “Parents of children with eating disorders say that their children have been turned away because their weight isn’t low enough, or that they’re put on long waiting lists, during which time the situation can get worse.

“While services are improving in some areas, these figures suggest that too often NHS targets for the treatment are not being met. It’s also clear that there is still a huge amount of work to do to help young people recognise when they may be developing an eating disorder and seek help earlier on.”

An NHS England spokesperson said: “There are now 70 NHS community eating disorder services for children and young people covering the whole of England, backed £150m of investment. As a result, eight in ten young people now get care within four weeks, and three-quarters receive urgent treatment in a week, so progress is clearly being made.”

The real saboteurs are the Brexiters destroying the NHS | Owen Jones

Who are the real saboteurs? Is it those who want Brexit to be properly scrutinised by parliament to prevent a disastrous deal which could wreck the economy and shred social provision? Those were, after all, the saboteurs who needed crushing according to the Daily Mail when Theresa May called her calamitous snap election. Or are the real saboteurs those who – through bigotry, twisted ideological zealotry and outright stupidity – are damaging the fabric of the public services we all depend on?

Britain’s National Health Service is propped up by 12,000 doctors from the European Economic Area. Without them, our most treasured national institution – which brings us into the world, mends us when we are sick or injured, cares for us in our final moments – would collapse. So it should be of some concern to us, to put it mildly, that nearly half of them are considering leaving the country, and a fifth have already made actual plans to do so.

What a twisted irony. The leave campaigners made a calculated decision to win the EU referendum with a toxic mixture of lies and bigotry. One of the most striking falsehoods was an extra £350m a week for the NHS after we left: instead it’s being emptied out of desperately needed doctors.

And can you blame them for wanting to leave? We’ve now had years of vitriolic scapegoating of immigrants to deflect responsibility from the banks, the tax-dodgers, the unaccountable corporations, the poverty-paying employers, the rip-off landlords, the neoliberal politicians, and all the other vested interests who have unleashed misery and insecurity upon this country. The positive contribution of immigrants was all but banished from public discussion. The campaign reached a crescendo during the referendum, with immigrants variously portrayed as potential criminals, rapists, murderers and terrorists, validating every bigot in Britain and resulting in a surge in hate crimes on the streets. I wonder why European doctors don’t feel particularly welcome right now?

This is about the worst possible time to haemorrhage doctors. The NHS is enduring the longest squeeze in its funding as a proportion of GDP since its foundation; it’s being fragmented by marketisation and privatisation; it’s under growing pressure because of decimated social care budgets while citizens continue to live longer. Plunging morale – because of privatisation, staff shortages and cuts – is affecting all doctors, regardless of where they’re born: a recent study suggested two-thirds are considering leaving. The consequence? We’re having to look abroad for more doctors. This is a recurring irony of Conservative rule. After the first five years of the coalition government, drastic cuts to nurse training places led the NHS to look for one in four nurses abroad.

How have we allowed the bigots and xenophobes of our unhinged tabloid press and political elite to inflict so much damage? Rather than making our live-saving foreign doctors feel unwelcome, surely we should be focusing on how we can tax the booming wealthy individuals and big businesses so we can invest more in our NHS? It should be abundantly clear who the real saboteurs are. They have already inflicted incalculable damage to our social fabric, our public services, our economy, and our international standing. The question is: how do we prevent them from inflicting even more damage?

Owen Jones is a Guardian columnist

One in five European NHS doctors plans to quit UK, survey reveals

Almost one in five of the NHS’s European doctors have made plans to quit Britain, according to research that has raised fresh fears of a Brexit-induced medical brain drain.

And almost half of the health service’s 12,000 medics from the European Economic Area (EEA) are considering moving abroad, the British Medical Association survey of 1,720 of them found.

The findings come amid growing evidence that Brexit may exacerbate problems of understaffing in the NHS by making both retention and recruitment of EU staff more difficult. In September NHS figures showed that more than 10,000 staff from EU countries had quit since the Brexit vote. And the number of EU nurses coming to Britain has dropped by 89% in the last year, Nursing and Midwifery Council figures released this month showed.

In total, 45% of respondents to the BMA survey said they were thinking about leaving Britain following the result of the EU referendum in June 2016 – three percentage points more than when the BMA ran a similar poll in February – while a further 29% were unsure whether they would go.

Among those who were considering going elsewhere 39% – or 18% of the whole sample – have already made plans to leave. The 12,000 doctors from the EEA (the EU plus Iceland, Liechtenstein and Norway) represent 7.7% of the NHS’s medical workforce.

Some of those leaving have been offered jobs abroad, while others are applying for posts overseas. Some have begun the process of seeking citizenship elsewhere, while others are having their qualifications validated so they can work in another country, the BMA said.

Q&A

What was wrong with the claim that the UK sends the EU £350m a week?

The claim that Britain “sends the EU £350m a week” is wrong because:

  • The rebate negotiated by Margaret Thatcher is removed before anything is paid ​​to Brussels. In 2014, this meant Britain actually “sent” £276m a week to Brussels; in 2016, the figure was £252m.
  • Slightly less than half that sum – the money that Britain does send to the EU – either comes back to the UK to be spent mainly on agriculture, regional aid, research and community projects, or gets counted towards ​the country’s international aid target.

Regardless of how much the UK “saves” by leaving the EU, the claim that a future government would be able to spend it on the NHS is highly misleading because:

  • It assumes the government would choose to spend on the NHS the money it currently gets back from the EU (£115m a week in 2014), thus cutting f​unding for​ agriculture, regional development and research by that amount.
  • It assumes​ the UK economy will not be adversely affected by Brexit, which many economists doubt.

“That so many EU doctors are actively planning to leave the UK is a cause for real concern. Many have dedicated years of service to the NHS and medical research in the UK, and without them our health service would not be able to cope,” said Dr Andrew Dearden, the BMA’s treasurer.

The Labour MP Darren Jones, a supporter of the pro-EU Open Britain campaign, said: “The British people were told last year that Brexit would boost the NHS by £350m a week. Now the evidence is piling up that it will break it instead.

“We all depend on the brilliant work done by doctors, nurses and other staff who come from the EU. There is no chance that we could replace their expertise if they continue to leave the UK.”

But the Department of Health said that figures released last week by the General Medical Council, showing a slight year-on-year rise in 2016-17 in the number of EEA doctors joining its medical register, showed the BMA’s findings were inaccurate.

“This survey does not stand up to scrutiny. In fact, there are actually more EU doctors working in the NHS since the EU referendum, more EU graduates joining the UK medical register and 3,193 more EU nationals working in the NHS overall,” a spokesperson said.

NHS at centre of storm: Brexit Means … podcast

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In this episode of Brexit Means, we look at a sector of the economy that ought not to be too affected by leaving the EU but that has found itself in the eye of the storm. If anything, healthcare was meant to be a major beneficiary of leaving, at least if you believed the £350m-a-week claim on the side of a bus. But our hospitals and care homes are kept afloat by an army of EU workers, many of whom feel increasingly gloomy about their long-term future in the UK.

Both Theresa May and her Brexit secretary, David Davis, have said they want to keep existing EU nationals working here and then have a system for allowing skilled workers to arrive from Europe. But the first desire depends on the divorce agreement with the rest of the EU and the second is in direct contradiction with continued promises to slash immigration rates.

Then there are the numbers. According to Health and Social Care Information Centre, 55,000 of the NHS’s 1.3 million workers and 80,000 of adult social care’s 1.3 million workers come from the rest of Europe.

Joining Dan Roberts to discuss what Brexit means for the NHS, and for healthcare more generally, are Janet Davies, the chief executive and general secretary of the Royal College of Nursing, and Sarah Johnson, a Guardian journalist who writes and commissions for our Healthcare Professionals Network.

Thousands with advanced cancer are surviving two years or more, data shows

Thousands of people in England with the most advanced stage of cancer are surviving for several years after diagnosis thanks to improved treatment and care, research shows.

Macmillan Cancer Support and Public Health England’s (PHE) National Cancer Registration and Analysis Service found that at least 17,000 people have survived for two years or more after being diagnosed with stage 4 cancer, when the disease has already spread to at least one other part of their body.

The figure, which has not previously been available, includes at least 1,600 women diagnosed with stage 4 breast cancer and 6,400 men diagnosed with stage 4 prostate cancer. It also includes at least 1,200 people diagnosed with stage 4 lung cancer and at least 2,300 people diagnosed with stage 4 bowel cancer.

Adrienne Betteley, Macmillan’s specialist adviser for end of life care, said: “Advances in treatment and care mean that a growing number of people have cancer that cannot be cured, but can be managed by treatments that alleviate the symptoms and may also prolong their life.

“This is really positive news, but living with advanced cancer can be a difficult situation to be in. As well as dealing with the physical symptoms of cancer and having multiple hospital appointments, scans and treatment options to contend with, there’s also the emotional and psychological impact of having an uncertain future.”

The research, revealed on Wednesday at the 2017 National Cancer Research Institute Conference in Liverpool, is based on data from England’s national cancer registry.

It captures people who were diagnosed with one of 10 common types of cancer between 2012 and 2013 and were still alive at the end of 2015.

The 17,000 is certain to be an underestimate, as there were a further 43,000 patients alive in 2015 who were diagnosed two to four years previously, but whose stage at diagnosis was not recorded in the registry. Many of those patients are also likely to have had stage 4 of the disease, also known as secondary or metastatic cancer.

Macmillan said the figures highlight the changing nature of the disease and expressed the hope that patients whose options were previously limited could see their cancer become more “treatable” and manageable, like other chronic illnesses.

Carol Fenton, 55, from London, was diagnosed with stage 4 breast cancer in 2015 and said her life since has been a “rollercoaster” of periods when her symptoms are settled and others when changes in scan results necessitate changes in treatment. She said: “It is hard to plan family activities a long way into the future, so we plan our life around my three-monthly scans. I’m concentrating on what I can do, rather than what I can’t, and I’m hoping that I will stay as well as possible for as long as possible, yet being realistic about preparing for when my condition progresses, not knowing if this will be in a few months, a year, or within five years or more.”

Several studies have suggested that cancer survival rates in the UK lag behind those of other European countries. For instance, survival rates for breast cancer are a decade behind countries including France and Sweden, according to one piece of research. Another found that the average adult five-year survival rates for patients diagnosed with eight common types of cancer between 2000 and 2007, were lower in the UK than the European average. Experts have flagged the need for earlier diagnosis and improved access to treatments.

Dr Jem Rashbass, cancer lead at PHE, said it was imperative people got diagnosed earlier, which was why the agency was running the Be Clear on Cancer campaigns to educate the public on the signs and symptoms of the disease.

Rashbass described the cancer registry data as “an invaluable resource in helping us to track improvements in cancer outcomes and gain more understanding of the implications for those living with and beyond a cancer diagnosis”.

The 10 types of cancer in the Macmillan and PHE study were: bladder; female breast; colorectal; kidney, renal pelvis and ureter; lung, trachea and bronchus; melanoma of skin; non-Hodgkin’s lymphoma; ovary; prostate and uterine cancer.

Streptococcus vaccine ‘could prevent over 100,000 baby deaths worldwide’

More than 100,000 stillbirths and baby deaths worldwide could be prevented by the development of a vaccine against an infection commonly carried by pregnant women, according to a groundbreaking report.

The impact of disease caused by group B streptococcus (GBS) has not been properly chronicled before and only in relatively recent years has anyone taken seriously its role in the deaths of babies in the womb as well as in the early days of life.

Worldwide, more than 21 million pregnant women carry the bacteria which used to be thought harmless, say researchers from the London School of Hygiene and Tropical Medicine (LSHTM). Today it is recognised as a cause of septicaemia and meningitis in newborns, with potentially deadly effects, and also as a major cause of stillbirths, but vaccines against it are only now in development.

Eleven papers have been published in the journal Clinical Infectious Diseases and presented at the American Society of Tropical Medicine and Hygiene Annual Meeting in Baltimore, revealing the scale of infection and the damage it causes. They say there are 410,000 cases of disease every year and 147,000 stillbirths and infant deaths. One in five pregnant women carries the bacteria, which can cause meningitis and also life-threatening septicaemia – blood poisoning – in them and their baby.

In wealthy countries, women thought to be at risk are given antibiotics in labour, but that does not prevent stillbirths and is not a practical solution for Africa and other developing countries where the infection rate is high. It could also contribute to antibiotic resistance, which is a global problem.

“Vaccines are the way to go,” said Joy Lawn, co-lead author of the papers and professor of maternal, reproductive and child health at the LSHTM. “They are on the way but it is going to be probably a five-year time horizon. The vaccine process needs to be accelerated. The World Health Organisation is already moving to make sure that when we get a vaccine it will be available for countries where the need is highest.”

In affluent countries, parent groups have called for more action against GBS, including universal testing to check whether pregnant women are carrying the bacteria.

“In the US particularly and also in the UK, it is an issue that is upsetting to parents, because neonatal death rates [in the first month of life] are quite low now and this happens to articulate, rich families; people don’t expect their children to die any more,” said Lawn.

But most of the focus has been on babies born alive who then become ill and die, or are damaged. There has been little attention to GBS as a cause of stillbirths. The team calculate it causes 90,000 infant deaths and 57,000 stillbirths worldwide at a very conservative estimate. There is no global goal to reduce stillbirths, as there is for newborns. “There are 2.6 million babies dying in the last three months of pregnancy, the same number as in the first month of life,” said Lawn. “For the baby who dies five minutes before birth, there isn’t a global goal.”

Stillbirths are under-investigated even in affluent countries, partly because of a sense of fatalism and also stigma. “People don’t know what the causes are. This [GBS] is an incredibly preventable cause,” said Lawn.

The researchers say that a vaccine which was 80% effective and reached 90% of women, could potentially prevent 231,000 infant and maternal cases of disease.

Dr Keith Klugman, director of the pneumonia team at the Bill & Melinda Gates Foundation, which funded the research, said: “The first few days and weeks of a baby’s life are the most vulnerable – by far. By filling in one of the great voids in public health data, this work provides crucial insight and shows the pressing unmet need for the development of an effective GBS vaccine. Immunising expectant mothers is a potentially groundbreaking approach that could dramatically reduce the number of maternal and child deaths.”

Johan Vekemans, co-author of the papers from the World Health Organisation, said an unacceptable number of families were affected. “It is now essential to accelerate the GBS vaccine development activities,” he said.

I am in opioid recovery. People like me shouldn’t be so alone | Greg Williams

The opioid painkiller OxyContin hit the market in a big way in the year 2000, just after I turned 17. I was already using other prescription drugs. I started taking it in small doses, then it became a daily routine of crushing and snorting pills.

I was naive to what I was doing to my body. On days, I didn’t have it I would experience withdrawal, and sleep all day, but I had this idea that because doctors made the drugs, they were safe. Not realizing at the time this was basically synthetic heroin.

I’m 34 now and have been in recovery from addiction to opioids, alcohol, and other drugs for just over 16 years – I know how long I’ve been in recovery better than I know my age.

There are 23.5 million people in recovery like me, though the 22.7 million people in need of treatment for substance use disorders issues dominate the headlines. Addiction stories are important, but people should realize that recovery should be at minimum an equal part of the stories on the issue.

With tremendous tragedy surrounding the current headlines, there remains a great many things to be hopeful about. There’s a lot of things strategically, systematically and individually that can be done to manage addiction.

I feel lucky to be alive, but it also makes me angry. Throughout the journey of my own recovery, it’s been depressing, frustrating, and in some ways, motivating, to watch the opioid crisis become a pandemic in slow motion. It’s validating to finally hear the president declare a national public health emergency, but it’s also angering: why didn’t President Bush or President Obama take bolder action as the statistical trends became horrifying during their tenures.

Part of the reason we are beginning to see bolder responses from elected leaders across the country is mounting civic engagement from individuals and families impacted by addiction.

When the President’s Commission on Opioids released their interim recommendations this summer recovery supports were a glaring omission. So the organization I co-founded in 2015, Facing Addiction, coordinated more than 15,000 people to comment on this vital missing component to a comprehensive response. This week in the final report recovery support was deeply integrated into a number of the final recommendations.

People in recovery need ongoing support because addiction is a chronic illness. You don’t go to 5 days of “detox” or 28 days of “rehab” or receive out-patient treatment and sail off into the sunset. There is a lot of talk about treatment, treatment, treatment but we haven’t spent enough time studying how people get and stay for the long-term.

I found alcohol when I was 12 years old and immediately began to chase that experience – how it washed away my fear and anxiety. Marijuana entered the picture pretty quickly after and by the time I was 15 years old, I was using opioids and benzodiazepines – anti-anxiety drugs including Xanax and Valium – basically anything me and my friends could find in medicine cabinets to start, and then moved to buying the pills from dealers.

When I started using OxyContin, as a 17-year-old kid, I didn’t really know what I was using and I certainly didn’t know I was going to become physically dependent on it.

Addiction was a serious, serious problem for me: from near fatal car accidents, to run ins with law, to problems in school, to severe challenges with my family, who kept trying to intervene. They began drug testing me at the end of high school, but I’d make up a story about how it was just one time.

I was really defiant, but my family still put me in an outpatient program at 17, where I acknowledged that pills were a problem in my life. I left the program after 15 days and was convinced I could drink alcohol and smoke marijuana, telling myself I was done with the opioid painkillers. Within a week of trying to just “drink and smoke,” I was back to using them.

My family convinced me to go to a chemical dependency center for adolescents after I was in a near fatal car crash in July of 2001. I was placed with peers my age who had lived through what I lived through, and developed a desire to stop using, for good. I even was blessed to find a recovery house for young men to transition into after leaving the treatment program. That support helped me learn how to hold down jobs and improve relationships with my family and others.

My social group became young people who were also in recovery and we had incredible fun and memorable experiences: bungee jumping, sky diving, snowboarding, traveling and just being present. It was great to remember what we did the night before. I liked the person I had become and I regained some self-esteem that I had lost. It helped me repair a lot of shame and baggage from my active addiction.

I was lucky to get the early intervention, quality treatment, recovery supports, and family support that I did. Adolescents do better in addiction treatment services than any other age group. I was able to sit in counseling and talk about the exact onset of my illness. If I went through that process at 35, I’d have to playback 23 years of using – a lot of which I most likely wouldn’t remember. I also might not have my family to support me.

There is also still a lot of negative public attitudes surrounding those suffering from addiction. As a society, we cast a lot of blame and shame towards people who become addicted, but we don’t really educate people about on how and when addiction starts. It is more complicated than one day I woke up, age 12, and made a rational independent choice to become addicted to opioids.

I’m in long-term recovery today in spite of the broken acute care system we have in place. I returned home from my treatment and recovery house, and I wasn’t discharged to check in with a doctor. I didn’t have a recovery coach or a cohesive recovery plan.

I had only been engaged in a formal system of supports for just four months (which is a very long time comparatively). But that’s just 2 percent of my entire recovery journey. We wouldn’t deal with people who have diabetes, heart disease, or asthma that way. We can’t afford to deal with addiction with short-term focused approaches and then blame some individuals for not being able to stay well long-term.

We have a system problem. Our system to deal with addiction is woefully lacking – we leave a lot of it up to luck and chance. We tell people to avoid driving pass liquor stores, get honest with your doctor about your history, and to delete certain numbers from your cell phone.

We basically tell people with this chronic illness we might be able to help you initiate your recovery, but then you are on your own. Good luck! The journey to long-term recovery for the leading cause of death for those under 50 in America shouldn’t have to be all luck. It’s up to all of us to get involved.

  • Greg Williams, co-founder Facing Addiction, a leading national addiction recovery advocacy organization

Full statutory inquiry to be held into tainted blood scandal

An inquiry into how contaminated blood transfusions infected thousands of people with hepatitis C and HIV has been moved from the Department of Health to the Cabinet Office after pressure from families, Downing Street has announced.

The inquiry, ordered in July after years of pressure from MPs and campaign groups, will be held as a statutory public inquiry under the 2005 Inquiries Act, Theresa May’s spokesman said.

An earlier parliamentary report found about 7,500 patients were infected by imported blood products from commercial organisations in the US, whose paid donors included injecting drug users and prison inmates. More than 2,400 haemophiliacs who received the tainted blood are dead.

While those affected and their families had welcomed the announcement of the inquiry, they had expressed concern that if it was held under the control of the Department of Health, it would in effect be investigating itself.

This was of particular concern following fears expressed by some MPs that officials had sought to cover up the scale of the scandal.

May’s spokesman said the first secretary of state, Damian Green, would post a written ministerial statement on Friday giving details about the inquiry.

“This follows a consultation with those who were affected on how the would like the inquiry to proceed,” he said, saying the consultation had received more than 800 written responses.

“We have been absolutely clear of our determination to establish what happened in relation to the contaminated blood scandal of the 70s and 80s, and to work with the victims and families of those affected, and we are now moving forward with that process,” the spokesman said.

Responsibility for the inquiry will move to the Cabinet Office, which is headed by Green.

“There was a strong view that it should be done away from the Department of Health. We’ve listened to those views, and that’s why it’ll be conducted under the auspices of the Cabinet Office,” the spokesman said.

It was not yet known who would head the inquiry or the terms of reference, he said, adding that a further announcement would be made before the end of the year.

A spokesman for the Haemophilia Society said it hoped the shift to the Cabinet Office “will be a turning point in helping the victims of this scandal finally get the justice they have long deserved”.

“We now hope a new and fresh discussion will be launched to establish the chair and terms of reference, which can now include the many groups who, like us, had felt unable to work with the Department of Health when it was so clearly conflicted,” he added.

Pressure for an inquiry had grown amid campaigning by the Labour MP Diana Johnson and Andy Burnham, the former Labour MP who is now mayor of Greater Manchester.

Johnson, who co-chairs an all-party group on the issue, said she welcomed the move but stressed that the Department of Health should have no say on the chair, panel or terms of reference.

“Secondly, this statutory inquiry must use its full powers to compel witnesses and hear evidence under oath. It must not be inhibited in its functions by the possibility of criminal liability being inferred,” she added. “Thirdly, the inquiry terms of reference must cover the aftermath of the tragedy as well as the run-up to infection. This includes the allegations of a criminal cover-up on an industrial scale.”

Diana Johnson (@DianaJohnsonMP)

Government have now done the right thing moving contaminated blood inquiry away from DOH and giving it full legal powers. https://t.co/3CyTNjZk2P

November 3, 2017

Labour’s shadow public health minister, Sharon Hodgson, said: “Having been implicated in this public health scandal, it would be highly inappropriate for the department to be the sponsoring body.

“The thousands of innocent families affected by this appalling tragedy deserve justice and today’s decision is an important step in that direction.”

Norman Lamb, the Liberal Democrat health spokesman, said: “This is crucial to ensure that the inquiry is completely independent from the Department of Health, whose role in this scandal needs to be fully scrutinised.”

The prime minister announced the contaminated blood inquiry hours before she faced possible defeat in a House of Commons vote on an emergency motion about the need for an investigation into the failings and the deaths.

Survivors welcomed the announcement, but said the decades-long wait for answers had been far too long. The contamination took place in the 1970s and 80s, and the government started paying those affected more than 25 years ago.

In his final speech to the Commons in April, Burnham said he had been contacted by victims and families who believed medical records had been falsified to obscure the scandal, saying there was evidence of “a criminal cover-up on an industrial scale”.

The scandal has its origins in the 1970s when people with haemophilia began to be given “factor concentrates” to treat their symptoms.

Drug companies found they could take the clotting factors out of blood plasma and freeze-dry them into a powder. There was high demand for the concentrate, taken from blood plasma, and in the US prisoners and people who were addicted to drugs were among those paid to give their blood. Donations were mixed together, which increased the chances of contamination.