Revealed: girl of 13 is first child in Britain to receive artificial heart

A 13-year-old girl from Worcester is the first child in Britain to have received an artificial heart, the Guardian can reveal, after doctors decided it was the only way to save her life.

Chloe Narbonne had the device installed in a complex nine-hour operation that involved 30 NHS staff at the Royal Brompton, a specialist heart and lung hospital in London. The artificial heart kept the then 12-year-old girl alive until a human heart became available a few weeks later.

While others have had a device known as a “Berlin heart”, which replicates its functions outside of the body, Chloe is the youngest person in Europe to have had an artificial heart implanted. With her fourth heart now beating in her chest almost a year on, she told the Guardian: “I feel well, like my normal self, but not quite my normal self, not after what I’ve been through. I guess the artificial heart was my lifesaver; it’s what kept me alive until I got another heart. What I’ve been through is life-changing.”

Chloe and her mum, Fabienne. Photograph: David Levene for the Guardian

Chloe was diagnosed with dilated cardiomyopathy when she was four weeks old. Her heart failed when she was 11 and still at primary school. She then had a stroke while waiting for a new heart, and when that first transplant failed to work, she was left close to death.

At that point, medics decided an artificial heart was the only option to keep her alive until another heart could be transplanted. André Simon, the director of heart and lung transplantation at the Royal Brompton and Harefield specialist hospitals, flew back early from a conference in the US to operate on Chloe last May.

What doctors said was an “extremely risky” surgery involved two medical firsts. Chloe was the first person in the world to be transferred from one hospital to another with her chest open and while on a life-saving extracorporeal membrane oxygenation machine, which delivers oxygen to a patient from outside the body. And Simon had to rebuild her heart’s atrium, or upper chamber, which had been removed during the failed transplant days earlier. A few weeks later, after her health stabilised on the artificial heart, she received the new heart.

Chloe’s mother, Fabienne Narbonne, said: “How they saved Chloe should be recognised for what it is – a miracle. Without the artificial heart she would be dead. It kept her alive for those crucial few weeks. By the time she got it she had run out of options.”

Simon, who has carried out all 13 artificial heart surgeries that have occurred in London hospitals, believes the success of Chloe’s operation should prompt other specialists to consider the devices for more children.

Heart surgeon André Simon. Photograph: Richard Saker for the Observer

Chloe’s long waits for a transplanted heart have made her and her parents, Fabienne and Todd, passionate advocates for a change in the law on organ donation. Chronic shortages of donated hearts, lungs, livers and kidneys result in thousands of people a year dying while on the transplant waiting list. The family want the rest of the UK to follow the example of Wales, which in December 2015 switched from the opt-in system of organ donation to one of opt-out, where people have to specifically refuse consent for organ retrieval if they die.

Fabienne Narbonne said: “We owe eternal thanks to the donors and their families, without whom none of this would be possible as without donors there is no point being on a waiting list, however long you have to wait. We cannot thank them enough for offering Chloe a second chance at life, no words can explain how it feels and we have nothing but respect and gratitude for their gift of life.”

how it works

Only 1,690 people in the world have ever received an artificial heart. Of those, 34 were under 18. The oldest person in the UK to receive one was 62. Chloe is the third youngest in the world, after a nine-year-old and an 11-year-old in the US.

“Chloe is an example of a patient who would have been out of options without the 50cc total artificial heart,” said Michael Garippa, the president of SynCardia, the American firm which makes the devices. “It was the only device that could save her.”

Revealed: girl of 13 is first child in Britain to receive artificial heart

Dementia sufferers to receive devices to block nuisance calls

The UK government is to fund high-tech call-blocking devices to protect dementia sufferers and vulnerable people from nuisance phone calls, although only around 1,500 people will be given the gadgets under the initial funding.

The £500,000 project will install trueCall devices in the homes of elderly and vulnerable people identified by doctors. The machines block all recorded messages, silent calls and calls from numbers not pre-identified by the homeowner, which the government says will offer particular protection for dementia sufferers.

Around £300,000 of the budget will be spent on the devices themselves, with the remaining funds allocated to management of the service and raising public awareness of scam calls.

Ministers have been pressed by health and consumer campaigners to do more about nuisance calls. One firm alone has been fined £350,000 for making more than 46m automated calls.

Announcing the fund, prime minister Theresa May said: “We want to create a fairer society by cracking down on unscrupulous practices which target the most vulnerable. This new, targeted scheme is the latest step in the government’s fight against nuisance calls, protecting those who are most at risk, including those with dementia.

“We have seen people tricked out of thousands of pounds by scam callers and this government is determined to clamp down on their activities once and for all.”

A trial of the devices last year by the National Trading Standards scams team resulted in 93% of participants feeling safer in their homes, the government said, including one person who had previously paid £150,000 to a scam caller.

Hilda Hayo, chief executive of Dementia UK, said the funding was a step in the right direction. “These calls can not only have a negative financial impact but can also lead to psychological affects such as anxiety, depression and a loss of self-esteem,” she said.

“We frequently receive calls to our national helpline from family members who are concerned that their relative with dementia has fallen prey to rogue traders.”

Further plans are being drawn up to combat the wider problem of nuisance calls, the government said, including a plan to issue fines of up to £1m if companies are found to be in breach of privacy and electronic communications regulations.

Dementia sufferers to receive devices to block nuisance calls

Virtual fracture clinics enable patients to receive care online

A physiotherapist and orthopaedic surgeon are transforming the way patients with fractures are treated and saving the NHS more than half a million pounds in an initiative which could become a national model.

Physio Lucy Cassidy and consultant James Gibbs have established a virtual follow-up clinic for patients with simple fractures or soft tissue injuries. In the past these patients would have come through A&E and have to return for a follow up appointment at a consultant-led fracture clinic. But today these patients receive all their post A&E care online.

The patient’s x-ray and injury is assessed within 24 hours by a physiotherapist and an orthopaedic consultant to decide if they can self-manage their recovery remotely. Patients are then phoned by the physio and offered a virtual clinic referral.

Virtual clinic patients are emailed a video message from the consultant talking through the injury and the prognosis and a link to an individual rehabilitation video – one of 27 which have been produced – with a six-week exercise plan to follow. Patients can phone a specialist physiotherapist if they have any problems; the option to come into a traditional face-to-face consultant outpatient clinic remains open.

Cassidy, an extended scope practitioner says: “This is a no brainer – it works for the patient, it works for the consultants and physios and it’s cost-efficient. Patients absolutely love the virtual clinic they say ‘What, I don’t have to come in?’ They really appreciate the service and they have a safety net.”

Some 12,000 patients have been referred to the virtual clinic run by Brighton and Sussex University hospitals NHS trust since it began three years ago. Fifty seven per cent of those patients are discharged without ever having to return to hospital; 37% have a follow up appointment at a consultant out-patient clinic and 6% are seen by a specialist physio. The service has already saved the NHS around £500,000 as the cost of a virtual referral is £67 – half the price of a traditional clinic appointment. Those savings are expected to double in the next year because since May the service has expanded to include wrist and hand injuries which account for almost half of all fracture clinic referrals.

Under the virtual system patients who require a face-to-face appointment are now booked in with the most appropriate specialist consultant at an outpatient clinic. Cassidy explains: “Under the old system it was a bit of a lottery who you saw. The patient would come to the fracture clinic and if it was run by the shoulder consultant on that day, but you had broken your ankle, you would still be seen by the shoulder consultant. One of the complaints I get from the consultants now is that ‘all my clinics are now full with people that need to be seen.’ ”

Gibbs first had the idea of a virtual fracture clinic when he was a junior doctor: “I would sit in the fracture clinic and feel exasperated for me, and for the patients, because the majority of injuries you see heal on their own with the passage of time and we were seeing people in clinic unnecessarily.”

He admits his consultant colleagues were sceptical at first about the changes but there would be a “hue and cry” now if the trust reverted to the old system: “It’s standardised treatment for specific injuries, it’s freed up consultants’ time and we are working smarter.”

The virtual clinic – which is being showcased at the NHS Health and Care Innovation Expo 2016 in Manchester next month (September) – is already being adopted by others. Virtual clinics are now run at Western Sussex hospitals NHS foundation trust and Maidstone and Tonbridge Wells NHS trust in Kent; others in Hastings and Eastbourne are due to launch in January.

A free “plug and play” package – an electronic virtual clinic blue print – is available for trusts to use as a starting point. Computer software which will allow hospitals to run their own branded virtual clinic on their own system – to be sold under license – is due to be launched next February.

Cassidy and Gibbs believe the virtual clinic – which was recognised in the NHS Innovations Challenge awards this year – could become a national model. That ambition is shared by the Chartered Society of Physiotherapists. Society professional advisor Priya Dasoju says: “We would like to see this model rolled out but it’s key that it is a physio-led service because it’s physios who can provide the rehabilitation service. It’s such a simple concept but makes such a massive difference.”

Virtual fracture clinics are new to the UK but others already exist worldwide – particularly in rural areas of Scandinavia, according to orthopaedic surgeon Stephen Cannon, vice-president of the Royal College of Surgeons.

He says: “It does require resources in terms of time from the physio and the consultant and is a huge change for patients. But it is patient-centred, it works in other parts of the world – it’s a great idea.”

Health and Care Innovation Expo in Manchester on 7 and 8 September will explore the Five Year Forward View in action. High profile health leaders will speak across two stages, while feature zones will explore digital health, personalised medicine and new models of care. NHS colleagues can attend free-of-charge. Click here to register.

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Virtual fracture clinics enable patients to receive care online

Wounded soldiers failing to receive the care they are entitled to

The Division of Well being has responded to the warning by saying that from up coming 12 months every single part of the country will have GPs specially educated to react to the bodily and mental overall health needs of veterans.

“Veterans are now entitled to priority accessibility to NHS care when their medical condition or care relates to their time in the Armed Forces, and we’re investing £22 million to help veterans bodily and mental health as well as funding 24 professional veterans prosthetics centres,” a spokesman explained.

“From summer 2015 there will also be a expert GP in each regional area trained in the physical and mental health demands of veterans.”

Prof Briggs has recommended that personnel serving complete-time are handled inside of 6 weeks and those who have retired from services are noticed inside twelve weeks. At the moment there is an 18-week waiting time target for civilians.

In a foreword to the report, the Duke of York writes: “This will boost care for all individuals and provide a extremely significantly much more constant strategy to rehabilitation. Without a doubt, some of my fellow Falklands veterans – often forgotten by the program – are living confirmation of the urgent want for this.”

Prof Briggs’s overview, acknowledged as the Chavesse report after Captain Noel Chavesse, a medical professional who was awarded the Victoria Cross twice in the course of the 1st Globe War for treating injured soldiers, is anticipated to discover:

·  There is nevertheless some lack of connection between the MoD and the NHS, particularly in rehabilitation. This results in a fragmented service and dangers serving personnel, reservists and veterans falling into “no man’s land”

·  When services personnel are discharged, the NHS gets to be the sole supplier of their on-going care. There is a threat that they will not acquire on-going care in a timely method

·  Variable and patchy rehabilitation signifies veterans might miss clinical consultations and get misplaced in the method

·  It is presently impossible for NHS systems to recognise serving reservists and veterans in order to ensure quickly tracked care for them

·  Both clinicians and veterans appear unaware of the Covenant and its implications for their care. As a consequence, veterans frequently neglect to inform the GP that they are an ex-serviceman and do not supply the GP with their discharge report.

Dr Dan Poulter, the well being minister, said: “Veterans are some of our bravest and very best and the entire country has a moral obligation to support them. By generating a specially educated GP available to each nearby region we are continuing to prioritise help for our veterans’ physical and mental wellness.”

Wounded soldiers failing to receive the care they are entitled to

Critically ill sufferers could receive untested remedies underneath new bill

Some medical professionals have voiced worries that the medical innovation bill could open up patients to risks from maverick medical professionals. Photograph: Peter Macdiarmid/Reuters

Critically ill sufferers who are told there is nothing more doctors can do for them could obtain untested medical treatment options if a new bill turns into law.

The healthcare innovation bill aims to beef up legal protection for medical professionals so they can draw on far more experimental therapies for sufferers for whom all other therapies have failed.

Underneath the bill, physicians can provide sufferers untested medication and other interventions offered they have the assistance of other medical doctors, who could be at the exact same hospital, and approval from the senior official who oversees healthcare practice at their institution and reviews to the Standard Health care Council.

The bill was brought forward by Lord Saatchi whose wife, Josephine Hart, died from ovarian cancer in 2011. The first model of the bill was limited to cancer patients, but a revised model, which will be presented to the Lords on Thursday, applies to a broader range of sufferers that have run out of treatment method alternatives.

The bill has obtained a mixed response from the medical local community, with some arguing in favour and other folks warning that it leaves vulnerable patients at danger from maverick doctors.

Professor Michael Rawlins, president of the Royal Society of Medication, explained he was “broadly in favour” of the revised bill. “There’s been a tradition of undertaking what Saatchi wants to be done in the previous and sometimes it’s created some spectacular results. But it really is grow to be more and more obvious that the current scenario is not very good sufficient and you are increasingly liable to negligence,” he advised the Guardian.

Need to the bill become law, Rawlins said medical professionals who give untested remedies to patients must publish the outcome, no matter whether it operates or not. “If a particular treatment method turns out to be useless, every person needs to know,” he explained.

But Margaret McCartney, a GP in Glasgow, stated there was absolutely nothing in the bill to benefit individuals or protect them at the end of their lives. “The problem is that it truly is really challenging to distinguish who is a maverick and who is a bona fide science-based medical doctor.”

“The safeguards they suggest are that doctors will discuss the therapy between a multidisciplinary group, but if you work in an different medicine sector, your colleagues will have the exact same technique to the proof as you do,” McCartney mentioned.

The Division of Well being held a public consulation on the first model of the bill and plans to publish a report primarily based on the responses later on this month. Even though Lord Saatchi’s crew claims it has clear public assistance for the bill, the Division of Overall health mentioned this was based mostly on responses the Saatchi team acquired right, or that had been published on the internet. The Department of Overall health has not shared its very own responses with the Saatchi team.

In their submission to the consultation, the Royal College of Radiologists warned there could be “significant unintended consequences” if the bill were enshrined in law. It cautioned that the bill “hazards exposing vulnerable and desperate sufferers to false hope, futile and probably dangerous (and pricey) remedies.”

All around 170 responses sent directly to the Department of Wellness consist of some strongly-held opinions that are not addressed in the revised model of the bill, the Guardian understands.

Dominic Nutt, a member of the Saatchi crew, mentioned they had received 18,000 responses to the 1st draft of the bill. “If 1 of the repsonses we have not observed comes up with something we have not considered of, then of program we will consider that into consideration,” he said. Asked if the bill would permit quacks to exploit vulnerable individuals at the end of the lives, Nutt mentioned: “Even if you could get some type of groupthink going, you even now have a person else who needs to approve this, who can say ‘hang on’. If you don’t have consensus, no judge will let you get away with it.”

The government will react to the bill on its second studying which has but to scheduled. As it progresses by means of parliament, ministers, MPs and peers will have the possibility to amend, oppose or support the bill.

“Innovation is at the heart of modernising the NHS and is vital for enhancing remedies and obtaining new cures. We are meticulously thinking about all the responses we received to our consultation on the Health care Innovation Bill and we aim to reply as soon as attainable,” a DH spokesperson said.

Critically ill sufferers could receive untested remedies underneath new bill

All NHS personnel to receive coaching in dementia

Dr Poulter stated all well being staff, from porters to physicians, needed instruction in how to spot the early symptoms of dementia, how to interact with sufferers and where assist and assistance is accessible.

Wellness Education England stated 110,000 personnel had now received such coaching, ahead of targets, with a additional 250,000 due to be offered the lessons by next March.

Dr Poulter stated: “Specialist consultants to search following older men and women are crucial, but we also need to have to equip all healthcare personnel with the skills and self-assurance to support individuals with dementia and their families.

“Training all personnel, from porters to doctors, to spot the early signs, to understand how to interact with individuals with dementia and to aid men and women uncover the appropriate care will provide critical support to help the hundreds of 1000′s of individuals affected by dementia every yr,”

Jeremy Hughes, chief executive of the Alzheimer’s Society: “This is enormous progress and a huge phase in the right path. Folks with dementia occupy up to a quarter of hospital beds and many could not be in a position to communicate that they are ache, in need to have of aid, hungry, thirsty or just unpleasant.

“This is why it is important that all staff from porters to nurses and doctors are conscious of dementia and trained in how they can meet the complex needs of those with the situation.”

All NHS personnel to receive coaching in dementia

Woman whose brain was injected with glue to receive multimillion-pound damages payout

These days, Judge Birtles at London’s Large Court accepted a settlement against Fantastic Ormond Street Hospital For Young children NHS Trust of a £2.eight million lump sum, plus £383,000 a year until Maisha is 19, escalating to £423,000 per 12 months for as extended as she lives, which some specialists count on to be to the age of 64.

The trust, which admitted liability for Maisha’s injuries, repeated its unreserved apologies for the shortcomings in her care, which had this kind of devastating consequences.

It mentioned her family had engaged open-heartedly with the trust, which had permitted employees to genuinely discover from what occurred to Maisha so that improvements could be created.

Neil Block QC, stated: “We can’t wind the clock back. We hope there are now systems and procedures in place to make sure such a tragic error can not be produced yet again.

“While money cannot restore what Maisha has lost, we are sure a fantastic burden has been lifted from the family by coming to the settlement we have.”

He explained 1 could not support but be inspired by what Maisha’s mothers and fathers, Sadir Hussain and Rukshana, had attained in terms of their 13-12 months-previous daughter’s rehabilitation.

“It is almost certainly the most intensive cognitive rehabilitation we have ever seen by a family and we would want to acknowledge almost everything they have carried out for Maisha and wish them properly for the future.”

The judge extended his sympathy and admiration to the loved ones and explained he hoped the compensation would make the rest of Maisha’s life as cozy as feasible.

Outdoors court, Maisha’s father, of Ilford, Essex, mentioned: ” We are sad and devastated by what occurred to our daughter. Her daily life is ruined. All her dreams have been broken.

“I hope that by bringing this case, lessons will have been discovered to keep away from this taking place to other families.

“We are grateful that agreement has been reached with Fantastic Ormond Street to make sure that Maisha’s care wants are met.”

The compensation will be spent on care and accommodation for Maisha, who requirements assistance with all every day tasks day and night, is in a wheelchair and has misplaced the vast majority of her bodily and cognitive capabilities.

Ms Rawson mentioned: “What is so heart-breaking about this situation is that the damage was so avoidable.

“If the syringes had been marked-up so the hospital could see which contained glue and which contained dye, then Maisha would not have suffered what is an utterly devastating brain injury. This kind of effortlessly avoidable mistakes ought to not take place.”

Woman whose brain was injected with glue to receive multimillion-pound damages payout