Category Archives: Cholesterol

New NHS investigative body to examine suspicious deaths

A new body being set up to investigate suspicious deaths in the NHS will be so secretive it will block families from finding out the truth of what happened to their relatives, campaigners have said.

The government says the Health Service Safety Investigations Body is designed to provide a “safe space” for doctors, nurses and other NHS staff to be open about what went wrong when a patient died or was harmed unnecessarily. The proposal for setting up the body is currently with a joint committee in the Houses of Parliament.

Earlier this week the report into Gosport hospital, which found more than 450 older people had died after being given life-shortening opioids, found that many who worked in the hospital had tried to raise the alarm but their complaints had not gone any further.

Campaigners have expressed concern that the investigative body will be prohibited from disclosing any information, even when it is neither personal nor damaging. It will be banned from revealing a hospital’s staffing or financial data that might have contributed to an untimely death.

Maurice Frankel, the director of the Campaign for Freedom of Information, said all that relatives, patients, campaigners and even MPs would see was the final report.

“It will introduce a new layer of secrecy into the NHS over and above anything that exists at the moment, which the investigators themselves will have no power to overcome,” he said.

“If it is not published in the report, they will have no power to disclose it. We are going to see the shutters come down around the whole system of accident investigation in a way that is very unhealthy and it is going to damage people’s confidence in the system.”

The Department of Health is modelling the body on the Department for Transport’s Air Accident Investigations Branch. Frankel pointed out that the last passenger death on a commercial airline in the UK was in 1999. There are an estimated 12,000 avoidable deaths and 24,000 serious incidents in the NHS each year.

“The whole country is going to be affected by this. It will lead to suspicions of cover-ups and that suspicion will probably be justified,” he said.

Families of older people who died in Gosport War Memorial hospital in the 1990s battled for 20 years to persuade officials to believe them and find out what happened. The report, from an expert panel that examined all the documentation it could access, concluded that 456 people died after being given life-shortening doses of opioid drugs on the wards over a period of 12 years.

Jeremy Hunt said the scandal exposed the “blame culture” in the NHS. “The basic problem is that if you are a doctor or a nurse and you see something going wrong … the thing that families want, if they are bereaved or have a tragedy, is to know that the NHS isn’t going to make that mistake again,” the health secretary said on BBC radio.

“We make it much too hard for doctors and nurses to do that. They are worried that there will be litigation, they will go up in front of the GMC [General Medical Council], or the NMC [Nursing and Midwifery Council].”

Hunt added: “In some places they are worried they might get fired. So we do have to tackle that blame culture and turn that into a learning culture.”

Frankel, however, said the secrecy of the investigatory body would not change the reluctance of doctors and nurses to admit fault, because the draft bill allows it to pass information to the police, the GMC or the NMC, which can end doctors’ and nurses’ careers.

Writing in the Guardian, Peter Walsh, the chief executive of Action Against Medical Accidents, which supported the Gosport families in trying to get inquests held, criticised the new body.

“It is hugely controversial, as it would introduce something it calls a ‘safe space’ in patient safety investigations. This is defined in the bill as a prohibition on sharing any information obtained in an investigation,” writes Walsh.

That prohibition, he says, means even a patient who was the victim of an incident, would not be able to see the information. “Nor could they use any facts in the final published report to seek justice through the civil courts or tribunals. There doesn’t seem much candour in that.

“This measure, if it is allowed to go ahead, would destroy any trust that patients or families could have in NHS investigations, and lead to a more adversarial culture where people turn to legal action and seek disciplinary action straight away.”

A Department of Health and Social Care spokesperson said: “We are committed to improving patient safety in the NHS and supporting staff to speak up is a vital part of that. It’s clear from incident investigations in aviation and rail sectors that staff are more encouraged to speak up about concerns in a safe space.”

NHS trusts win legal fight over Virgin Care child health contract

A decision by Lancashire county council to award a £104m contract for children’s healthcare services to Virgin Care has been thrown out after a legal challenge by NHS trusts.

A high court judge found the local authority’s process was flawed and the contract for services for children aged 0-19 should not have been awarded to the private provider late last year.

The case hinged on the scoring system used by the council when it reviewed rival bids for the deal, which the trusts claimed had been applied incorrectly.

The contract for delivering the Lancashire’s healthy child programme, which includes providing health visitors and school nurses, was advertised in September.

After the tender process, the local authority announced its preferred bidder was Virgin Care, part of Sir Richard Branson’s Virgin Group.

It was chosen over the existing providers – Lancashire Care NHS foundation trust and Blackpool Teaching Hospitals NHS foundation trust.

On Friday, the judge, Justice Stuart-Smith, upheld the trusts’ legal challenge, saying the council’s decision to score Virgin’s bid more highly than theirs was not adequately supported in its notes of the scoring procedure.

After reviewing them, he said he had “come to the conclusion that the reasons given were not sufficient in law in the circumstances of this case”.

A spokesperson for both trusts said: “As public bodies, the trusts are always reluctant to resort to legal action, in particular against other public bodies. However, we felt that we had submitted a strong bid and wanted to gain clarity on why we had not been successful.

“We believe the connectivity with other wider NHS services is important in terms of being able to fully meet the needs of the children and families who access these types of services in a joined-up way.

“We are proud of the services within this contract and our teams that deliver them.”

Virgin Care had been due to begin the five-year contract in April. However, after the legal proceedings began, the trusts were granted an extension until April 2019.

The council said this would stay in place while it considered its options.

Shaun Turner, the local authority’s cabinet member for health and wellbeing, said: “Putting services out to the market is not a political decision, it is simply part of what the county council is required to do in order to meet its legal obligations.

“Although we’re disappointed in the outcome of this judgment, we are reassured that with the exception of the moderation element, the county council’s procurement processes was appropriate and that individual panel members were not found to be at fault.”

Turner said the council would not be rerunning the procurement process or inviting new bids, as only the final part of the process had been judged as being flawed.

“Our existing contract with LCFT and Blackpool NHS Teaching Hospitals trust runs until March 2019, so there will be no disruption to these services,” he said.

“We recognise this is a stressful time for our health visitors and school nurses. We value the vital role they play and will continue to support them in delivering the best outcomes for our children and families.”

Virgin Care has been a growing provider of healthcare contracts awarded by NHS bodies and county councils, and offers similar child health services in other parts of the country.

The company was awarded £1.6m by NHS commissioning groups this week after legal action over a children’s services contract it missed out on in Surrey.

The doctor from Myanmar faced with 1 million patients and a plague of rats – podcast

Growing up in an isolated village in western Myanmar was tough, with no running water or electricity, and little access to healthcare. The nearest hospital was several days’ walk away. SaSa was determined to become a doctor, but just as he reached the end of his training, the bamboo on which his community survived was wiped out, triggering a huge increase in rats, who ate what little food was left. The overwhelming challenges of trying to bring medical help to the remote region inspired SaSa to found the organisation Health and Hope, which has since enabled hundreds of villagers in Chin state to become community health workers.

Theresa May under fire over NHS ‘Brexit dividend’ claim

Theresa May is under pressure to justify how a so-called Brexit dividend could help pay for a planned £20bn annual funding rise for the NHS, as her announcement on extra health spending was met with scepticism.

The prime minister told the BBC the government’s 10-year spending plan for the health service in England – which she will formally unveil on Monday – would involve “significantly more money going into the NHS”.

She told Andrew Marr on Sunday: “What we’re doing is saying very clearly as a government that the NHS is our priority. And it’s right, because the NHS matters to people.

“We have looked carefully at what we have put into the NHS to ensure that we deliver world-class healthcare.”

But May’s assertion that the rise could be partly paid for with money saved by ceasing EU contributions after Brexit was dismissed by Sarah Wollaston, the Conservative backbencher who chairs the Commons health and social care committee.

“The Brexit dividend tosh was expected but treats the public as fools,” she tweeted. “Sad to see government slide to populist arguments rather than evidence on such an important issue. This will make it harder to have a rational debate about the ‘who & how’ of funding and sharing this fairly.”

Her view was echoed by Philip Lee, who recently resigned as justice minister and who sometimes works as a freelance GP. Lee tweeted that while the extra money was to be welcomed, “we must be honest about how we are going to pay”.

He added: “There is no evidence yet that there will be a ‘Brexit dividend’ – so it’s tax rises, more borrowing or both.

Q&A

What are the financial pressures on the NHS that have built up over the last decade?

Between 2010-11 and 2016-17, health spending increased by an average of 1.2% above inflation and increases are due to continue in real terms at a similar rate until the end of this parliament. This is far below the annual inflation-proof growth rate that the NHS enjoyed before 2010 of almost 4% stretching back to the 1950s. As budgets tighten, NHS organisations have been struggling to live within their means. In the financial year 2015-16, acute trusts recorded a deficit of £2.6bn. This was reduced to £800m last year, though only after a £1.8bn bung from the Department of Health, which shows the deficit remained the same year on year.

Read a full Q&A on the NHS winter crisis

The junior Brexit minister Suella Braverman was unable to say how much a Brexit dividend might amount to if it did exist. “There are lots of estimates,” she told Sky’s Sophie Ridge on Sunday when questioned about it.

Speaking to Marr, May was vague on how the funding increase would be paid for, saying only that it would be financed from the country “contributing a bit more” and a boost to public finances from Brexit – something the government’s official forecasts say will not happen.

But the PM insisted there would be extra money after Brexit. “At the moment, as a member of the European Union, every year we spend significant amounts of money on our subscription, if you like, to the EU.

“When we leave we won’t be doing that. It’s right that we use that money to spend on our priorities, and the NHS is our number one priority.”

The argument contradicts official forecasts, which say that leaving the EU will weaken the public finances, at least in the short term. EU contributions until 2022 have already been earmarked, either to keep paying into Brussels budgets or to replace this spending elsewhere.

May also faced pressure about the amount of the increase, which she said would be a 3.4% real-terms average rise over the first period, up to 2023-24. This is less than the 5% that the Institute for Fiscal Studies (IFS) says is needed for real progress.

In another tweet, Wollaston said the planned 3.4% real-terms increase over the period was welcome but “will not deliver as planned” without increases in preventive health measures, social care, training and capital budgets.

May saidsome improvements would come from efficiencies, and she claimed too much of the NHS budget increases under Labour governments were spent on non-clinical care. “We need to make sure that the money we put in is being spent on delivering for patients,” she said.

To pay for the rise, May said the UK would be “contributing more as a country”, but gave no details as to whether this would be higher taxes or more borrowing. “The chancellor will announce the details in due course, and before the spending review but there are many aspects that will change over the next few months, potentially,” she said.

The shadow foreign secretary, Emily Thornberry, expressed scepticism about the plan, saying people would not be fooled.

Thornberry told Marr: “I’d certainly welcome it if we could believe it [but] how are they going to pay for it? They say that they’re going to increase taxes, but we’ve yet to hear who is going to get their taxes increased and how. They say they’re going to increase borrowing but they haven’t said by how much, and they haven’t told us what the effect will be.

“They’ve told us they’re going to pay for it from a Brexit dividend. We don’t really know what that means because we don’t know what the deal is going to be and what the overall effect on the economy is going to be, and actually whether Brexit is going to end up costing us a great deal of money.”

Thornberry also noted that the new plan did not include extra spending on social care. “You can’t talk about just the NHS. You can’t have the NHS without social care. Anyone who has an elderly relative or is elderly themselves knows that.”

The Local Government Association (LGA), which represents councils, said it was disappointing there was not a parallel boost to social care.

Izzi Seccombe, who heads the LGA’s community wellbeing board, said: “Properly funding social care would help prevent crises in the NHS by reducing the numbers of people who are admitted to hospital in the first place.”

The Liberal Democrat MP Norman Lamb said the funding was “an inadequate sticking plaster” that “falls well short of what the IFS and others say is necessary. It will condemn the NHS and patients to a very uncertain and dangerous future.”

Mother of boy whose cannabis oil was seized pushes for legalisation

The mother of a boy with severe epilepsy has called for a meeting with the home secretary and health secretary to talk about making medical cannabis legal for children who have similar conditions to her son.

Charlotte Caldwell said it was “absolutely horrific” and “cruel” that 12-year-old Billy had been refused cannabis oil after Home Office officials confiscated a six-month supply. She is seeking a discussion on the issue with Sajid Javid and Jeremy Hunt.

She added that his condition was now beginning to improve after being allowed to have some of the treatment on licence.

Speaking to BBC Breakfast, Caldwell said: “This experience, that myself and my little boy have endured in this last week, I do not want, and I will not stand by and let, any other family in our country endure. It’s absolutely horrific, it’s cruel.

“I’m asking Sajid now. I’m in London, I can assure him I’m not going anywhere, until this is now put in place and this medicine is made accessible to all the other children that desperately need it.”

Billy began using cannabis oil, which contains a substance called tetrahydrocannabinol (THC), in 2016 to control his seizures.

THC is illegal in the UK but available elsewhere. Billy’s most recent supply, which came from Canada, was confiscated when he and his mother arrived at Heathrow airport from Toronto. After Billy suffered “life-threatening” seizures without access to his supply, Javid issued a special licence to provide him with treatment.

The oil was administered under a 20-day licence and is not allowed to be taken home. A spokeswoman for the Home Office said it was an “exceptional licence” for a “short-term emergency” and it would need to be reviewed.

Mother of boy whose cannabis oil was seized pushes for legalisation

The mother of a boy with severe epilepsy has called for a meeting with the home secretary and health secretary to talk about making medical cannabis legal for children who have similar conditions to her son.

Charlotte Caldwell said it was “absolutely horrific” and “cruel” that 12-year-old Billy had been refused cannabis oil after Home Office officials confiscated a six-month supply. She is seeking a discussion on the issue with Sajid Javid and Jeremy Hunt.

She added that his condition was now beginning to improve after being allowed to have some of the treatment on licence.

Speaking to BBC Breakfast, Caldwell said: “This experience, that myself and my little boy have endured in this last week, I do not want, and I will not stand by and let, any other family in our country endure. It’s absolutely horrific, it’s cruel.

“I’m asking Sajid now. I’m in London, I can assure him I’m not going anywhere, until this is now put in place and this medicine is made accessible to all the other children that desperately need it.”

Billy began using cannabis oil, which contains a substance called tetrahydrocannabinol (THC), in 2016 to control his seizures.

THC is illegal in the UK but available elsewhere. Billy’s most recent supply, which came from Canada, was confiscated when he and his mother arrived at Heathrow airport from Toronto. After Billy suffered “life-threatening” seizures without access to his supply, Javid issued a special licence to provide him with treatment.

The oil was administered under a 20-day licence and is not allowed to be taken home. A spokeswoman for the Home Office said it was an “exceptional licence” for a “short-term emergency” and it would need to be reviewed.

Boys do more exercise than girls, research finds

Adolescent girls and young women are less likely to engage in heart-rate raising recreational activities than their male peers, and when they do keep at it for shorter periods of time, research has revealed.

Current guidelines in the UK and US recommend that children and teens undertake at least an hour of moderate or vigorous physical activity a day, with adults advised to aim for 150 minutes a week.

However, a study from the US has found that more than 20% of adolescent girls and 12% of boys do no sports or recreational physical activity in a week, with just under 30% of men and almost 40% of women, aged 18-29, saying the same.

Dr Charlene Wong, co-author of the research from Duke University in North Carolina, said the research could help to direct public health interventions, noting that the study suggests the focus should be on females, young adults and those from minority and low-income backgrounds.

“Our black female young adults were the least likely to say they did any physical activity and those who did were active for the shortest amount of time,” she said.

Writing in the journal Jama Pediatrics, Wong and colleagues describe how they pooled and analysed data from an annual nationwide health survey in the US, encompassing the years 2007 to 2016, focusing on responses from 9,472 individuals aged between 12 and 29.

The survey, carried out through interviews, asked participants questions about their levels of physical activity relating to sports or recreational pursuits.

While almost 88% of boys aged between 12 and 17 reported some moderate or vigorous exercise in a week, the figure fell to just under 73% for males aged 18 to 24, and to just below 71% for those aged 25 to 29. For females the proportion fell from just over 78% of adolescents to just over 61% for both of the older age groups.

For those who did get their blood pumping, the amount of time spent exercising also fell with age, from just over 71 minutes a day for adolescent boys to just over 50 minutes for those aged 25 to 29. For girls, it fell from 56 minutes to just over 39 minutes a day respectively.

White adolescent boys were the most likely to say they exercised in a week, with black males aged 18-24 reporting the longest duration of physical activity a day.

Once factors including weight, education and income were taken into account, the team found race was linked to whether females reported any physical activity: in general, a larger proportion of white females said they exercised than black or Hispanic participants. The trend was less clear for males.

Higher income was linked to reporting physical activity for females regardless of age, but the same only held true for adolescent boys and not young men, while young adults with a college education were more likely to report any exercise across both sexes. Weight had little impact on whether participants reported exercising.

While it is not clear what is behind the trends, the authors say multiple factors might be at play including issues around body image, social norms for exercise being different between the sexes, less scheduled activity after leaving school and growing pressures of working life.

But the study had limitations, including that activity such as walking to work was not included, it was not considered whether participants had children, or were pregnant, and the authors admit that self-reported data can lead to an over-estimation of activity.

Dr Gavin Sandercock, an expert in child activity and fitness from the University of Essex who was not involved in the study, said the findings mirror certain trends seen in the UK, including that females exercise less than males and that physical activity drops across both sexes with age.

While he noted there are already some campaigns aimed at encouraging girls and women to exercise, including This Girl Can, he said it was also important to help individuals of both sexes from lower income groups to become physically active.

“We know that if you get children more active, as well as getting more physically healthy, they get happier and their educational attainment improves,” he said.

Joan Duda, professor of sport and exercise psychology at the University of Birmingham, said offering a choice of activities and cultivating a sense of empowerment is key: “We need to do more to promote participation in physical activity in the case of adolescent females, and males, not just taking it up or giving a particular activity ‘a go’ but also how to sustain quality engagement,” she said.

Boys do more exercise than girls, research finds

Adolescent girls and young women are less likely to engage in heart-rate raising recreational activities than their male peers, and when they do keep at it for shorter periods of time, research has revealed.

Current guidelines in the UK and US recommend that children and teens undertake at least an hour of moderate or vigorous physical activity a day, with adults advised to aim for 150 minutes a week.

However, a study from the US has found that more than 20% of adolescent girls and 12% of boys do no sports or recreational physical activity in a week, with just under 30% of men and almost 40% of women, aged 18-29, saying the same.

Dr Charlene Wong, co-author of the research from Duke University in North Carolina, said the research could help to direct public health interventions, noting that the study suggests the focus should be on females, young adults and those from minority and low-income backgrounds.

“Our black female young adults were the least likely to say they did any physical activity and those who did were active for the shortest amount of time,” she said.

Writing in the journal Jama Pediatrics, Wong and colleagues describe how they pooled and analysed data from an annual nationwide health survey in the US, encompassing the years 2007 to 2016, focusing on responses from 9,472 individuals aged between 12 and 29.

The survey, carried out through interviews, asked participants questions about their levels of physical activity relating to sports or recreational pursuits.

While almost 88% of boys aged between 12 and 17 reported some moderate or vigorous exercise in a week, the figure fell to just under 73% for males aged 18 to 24, and to just below 71% for those aged 25 to 29. For females the proportion fell from just over 78% of adolescents to just over 61% for both of the older age groups.

For those who did get their blood pumping, the amount of time spent exercising also fell with age, from just over 71 minutes a day for adolescent boys to just over 50 minutes for those aged 25 to 29. For girls, it fell from 56 minutes to just over 39 minutes a day respectively.

White adolescent boys were the most likely to say they exercised in a week, with black males aged 18-24 reporting the longest duration of physical activity a day.

Once factors including weight, education and income were taken into account, the team found race was linked to whether females reported any physical activity: in general, a larger proportion of white females said they exercised than black or Hispanic participants. The trend was less clear for males.

Higher income was linked to reporting physical activity for females regardless of age, but the same only held true for adolescent boys and not young men, while young adults with a college education were more likely to report any exercise across both sexes. Weight had little impact on whether participants reported exercising.

While it is not clear what is behind the trends, the authors say multiple factors might be at play including issues around body image, social norms for exercise being different between the sexes, less scheduled activity after leaving school and growing pressures of working life.

But the study had limitations, including that activity such as walking to work was not included, it was not considered whether participants had children, or were pregnant, and the authors admit that self-reported data can lead to an over-estimation of activity.

Dr Gavin Sandercock, an expert in child activity and fitness from the University of Essex who was not involved in the study, said the findings mirror certain trends seen in the UK, including that females exercise less than males and that physical activity drops across both sexes with age.

While he noted there are already some campaigns aimed at encouraging girls and women to exercise, including This Girl Can, he said it was also important to help individuals of both sexes from lower income groups to become physically active.

“We know that if you get children more active, as well as getting more physically healthy, they get happier and their educational attainment improves,” he said.

Joan Duda, professor of sport and exercise psychology at the University of Birmingham, said offering a choice of activities and cultivating a sense of empowerment is key: “We need to do more to promote participation in physical activity in the case of adolescent females, and males, not just taking it up or giving a particular activity ‘a go’ but also how to sustain quality engagement,” she said.

What happens when doctors change your diagnosis?

Suzy Syrett suddenly stopped going to her bipolar support group. Nobody had thrown her out, but one day she had bipolar and the next day she didn’t.

Her symptoms had begun at university – she withdrew socially, her grades began to fall and her mood was low: “I was essentially struggling with life and not understanding why.” Diagnosed with bipolar disorder in 1994, lithium seemed to help but her support group in Glasgow became crucial, too: “Being among people who shared the diagnosis, it normalised it for me, it gave me a vocabulary to explain to family and friends what was going on.”

Syrett later developed hallucinations and, in 2008, was hospitalised. By the time she was discharged six months later, her diagnosis had been switched to depression with psychosis. The loss of her bipolar diagnosis, one held for 14 years, left her with a sense of grief. “Because I have bipolar” was no longer a way to rationalise her symptoms. “My full understanding [of my illness] and how I framed it in my head had gone, and the support group went too.” She decided not to return, fearful her advice would be dismissed, aware their advice might no longer hold relevance for her.

People talking during a support group meeting.


People talking during a support group meeting.

This time, Syrett didn’t reach out to a support group for fear her diagnosis might shift again. “It had been quite damaging, feeling excluded from a group that offers inclusion to people not usually included in society. Like a double whammy of exclusion almost.”

By 2016, she was diagnosed with a personality disorder (it is not clear that the previous diagnosis of depression with psychosis was reversed as such; rather, a third diagnostic label had now emerged). “My immediate perception was that all of the pain and stress that I and my family and friends had been through, that this wasn’t caused by an illness, that it was caused by me. That was a burden I struggled to carry.

Now 45, Syrett is especially careful to emphasise that despite her experiences, she isn’t telling me her story to enter an ongoing debate about diagnostic labels in psychiatry; instead she wants to highlight the support needed when a diagnosis changes. Not just for subsequent alterations in treatment and prognosis, but also to help deal with potential employment issues, withdrawal of personal independence payments and the reactions of friends and family.

As Eliza Fricker discovered, revised diagnoses are not just a tumultuous experience for patients; families are profoundly affected, too. Fricker, a Brighton-based illustrator and designer, had an especially close relationship with her mother. Maria had worked in bookshops and libraries all her life. She loved Motown, tapestry and theatre. She once danced in the audience of Top of the Pops with Lenny Henry.

But in her early 60s, Maria insidiously withdrew from the family, stopped caring, and, tellingly, stopped reading. She became incontinent and wore the same soiled coat each day.

Diagnoses of depression or dementia were suspected. Fricker would find her mother, previously “passionate, quick-witted and strong”, sitting on neighbours’ walls for hours at a time, staring into space.

“We were always really good as a family, we could talk about everything. When my mum got ill, it just imploded and fell apart. All those little niggles, the quirks, it all unravelled.” Her parents separated after 42 years. Antidepressants and bladder medications were dispensed. At one assessment, a wellbeing counsellor told Fricker that Maria, then aged 65, was “just getting old”. She was finally seen in a memory clinic and a brain scan was ordered.

Fricker was on holiday with her husband and daughter when she received a call. A consultant told her that her mother’s MRI scan had shown a mass pressing on the frontal lobes of the brain, one of the largest tumours he had ever seen. Three years had passed between the onset of her mother’s symptoms and that scan, and although the meningioma was fully resected in a 13-hour operation, Maria was left with permanent behavioural and cognitive changes – she is less empathic and more impulsive now, and remembers little of the past few years. (Fricker wrote her graphic novel, Just Getting Old, partly so her mother could understand this lost time).

A support group in session.


A support group in session.

Although she describes the hospital care and rehabilitation as fantastic, it was primarily practical, and Fricker wishes it had been more holistic, particularly to support her mother through this change of diagnosis. Within weeks of arriving home, Maria considered suicide. “For her, it was like coming out of a coma, this realisation she was no longer with my dad, that she was on her own, that she had seemingly lost it all because she had been ill.”

It is not just misdiagnosis that leads to a revised opinion. Sometimes it is only the natural evolution of a condition that allows a firm conclusion. Diagnostic criteria shift, as seen recently in multiple sclerosis. Or new information emerges – a long-lost family member unveils secrets of a hereditary condition, and revised diagnoses will surely become more common as our diagnostic tools improve.

One area of rapid transformation lies within the genetics of rare diseases. Suneet Agarwal, a paediatric haematologist/oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, is facing just these sorts of challenges. “In the era of clinical genomics, identifying rare diagnoses is increasingly common. We’re realising that clinically similar entities are biologically distinct.” Two patients might look as if they have the same condition, but gene testing later tells a different story. Agarwal and colleagues found that some children diagnosed with one form of congenital anaemia ended up having another, once targeted genetic testing of mitochondrial DNA could be performed. But while families might have been relieved that a revised diagnosis led to more appropriate treatments, Agarwal’s team learned they needed to provide support beyond a change in tablets and transfusions. For one of the diagnoses – Pearson Marrow Pancreas syndrome – he could at least reassure parents that any children they had in the future would likely be unaffected. But the second condition (Diamond Blackfan Anaemia) was a different matter. If a parent carried a mutated copy of the gene, there was usually a 50% chance that any future children would develop the condition. And so genetic counselling and emotional support became paramount.

Following these sorts of experiences, Agarwal is keen for medics to be sensitive to how disruptive a revised diagnosis can be. “A distressed patient or parental reaction can be unexpected, especially when the physician feels the new diagnosis is ‘better’ or is the result of her or his heroic diagnostic odyssey on behalf of the patient.” And he emphasises that a support group can be a major factor in this reaction: “Physicians should recognise the power and importance of community, especially for patients facing rare diseases. The patient group may have served as their lifeline of information and friendship for years.”

That is something Syrett identifies with. Her hope today is that others can be supported if their diagnosis changes. “I would have loved a doctor to have thought: if you know your patient well enough to give them a psychiatric diagnosis, I hope you’d know them well enough to anticipate the impact of changing that diagnosis.”

Now she carries lessons from her own experiences to her role as peer researcher in the department of mental health and wellbeing at the University of Glasgow, most recently helping to complete a study of cognitive-based therapy for psychosis. After all of this time, Syrett brings to others the very support that she once lost herself.