Organ donation rates for transplants still too low in UK, says NHS

A record number of organs were donated and transplanted in the UK in 2015-16 but the consent rate is still one of the lowest in Europe, with a worrying shortfall of donors from black or Asian communities.

In the 12 months to the end of March, 1,364 people became organ donors when they died and their donations resulted in 3,519 transplants taking place, figures published on Thursday show.

The consent rate stood at 62%, slightly up on 2012-13 when it was 57%, but well short of the target of 80% by 2020 with the biggest obstacle being family refusal, mostly when they were unaware of their deceased relative’s intentions.

The consent rate was much lower (34%) among potential black, Asian and minority ethnic (BAME) donors, which is of particular concern as 26% of the current waiting list are BAME.

Sally Johnson, NHS Blood and Transplant director of organ donation and transplantation, said: “Think about what we would want others to do for us if we ever need a transplant and be prepared to donate. Talking to your relatives about what you want is crucial as it is much more difficult to agree to donation when you don’t know what the patient would have wanted. There are about 6,500 people waiting for a transplant now and they need people to agree to donate for them to get the organ transplant they so desperately need.

“It is especially important for people from our black and Asian communities to talk about organ donation. I realise that this is a very difficult subject but there are many black and Asian people who need a transplant. While some are able to receive an organ from a white donor, others will die if there is no donor from their own community.”

Last year, 466 patients died in need of an organ and a further 881 were removed from the transplant waiting list, many whom would also have died shortly afterwards.

NHS Blood and Transplant estimates that if 80% of families approached to donate a relative’s organs said yes, more than 1,000 additional transplants would take place across the UK each year.

People from black and Asian communities have a higher incidence of conditions such as diabetes and certain forms of hepatitis, making them more likely to need a transplant, and make up a third of the active kidney transplant waiting list. But in 2015-16 only 67 (5%) of all deceased organ donors were from black and Asian backgrounds.

Lloyd Dalton-Brown, 65, who lives in Exeter, agreed to donate his half-sister Jane’s organs when she died aged 29 after being hit by a truck in 2000. Their father was from Trinidad. “Because of that gift [of organs] five people had transplants, which is utterly fantastic. One of them was a mother of children of three and four; she got one of Jane’s kidneys and because of that ended up with quality of life and was able to bring up her children.

“A lot of people from Caribbean backgrounds are quite susceptible to kidney disease. Her organs were going to be really beneficial to someone in that category. There’s a positive outcome after a very sad ending.”

The Welsh government, which on 1 December became the first part of the UK to introduce a “soft opt-out” system, expressed satisfaction at a 24% rise in the number of its citizens whose lives have been saved or improved by organ transplants, compared with a 4% increase in the UK as a whole. The effect of the change in system was relatively small in the period analysed, during which there were nine cases where consent was deemed.

Charities including Live Life Give Life and the British Heart Foundation urged people to join the organ donor register and communicate their decision to their loved ones.

To join the NHS Organ Donor Register visit www.organdonation.nhs.uk or call 0300 123 2323.

Organ donation rates for transplants still too low in UK, says NHS

Can the NHS really not afford second transplants for cancer patients like me? | Hannah Partos

If I had not been given a stem cell transplant, I would be dead by now. At 22, I was diagnosed with acute lymphoblastic leukaemia, an aggressive form of blood cancer. Doctors told me a transplant of healthy stem cells from an unrelated donor was my only hope. Last month, I was thrilled to celebrate three years in remission. I hope the cancer never returns, but if it does, my only chance of survival will be another transplant. Except this time around, I might not be given that chance.

Two weeks ago, NHS England announced it would stop routinely funding second stem cell transplants for patients who have relapsed more than a year after their first transplant. NHS England, the body which oversees the budget for commissioning NHS services, has ruled that the treatment is “not currently affordable”, even though it was widely available in England before 2013, and is routinely given to patients in Europe and the US.

At a time of critical illness, the process is lengthy, bureaucratic, and extremely stressful

In a letter to The Times Anthony Nolan, the blood cancer charity and stem cell registry that coordinates all donors for UK transplants, joined forces with leading haematologists to condemn the decision, stating that “NHS England is ignoring the advice of the clinical community, thereby effectively handing [most of these] patients a death sentence”. The charity delivered an open letter with 18,000 signatures to Jeremy Hunt last Thursday, calling on him to urge NHS England to reconsider their decision.

The announcement has left me reeling. However healthy I might be right now, I know that my bone marrow is only one misstep away from needing a transplant again. If I relapse tomorrow, I won’t be able to afford private treatment, which can be between £50,000 and £120,000. My only option would be to submit an individual funding request to NHS England, arguing that my case is exceptional and that I have a high likelihood of survival, which justifies the treatment’s price tag.

— Anthony Nolan (@AnthonyNolan) July 27, 2016

Write to your MP.

Tell them that second transplants save lives – they need to be funded.https://t.co/DqtArcku2n pic.twitter.com/IxjSoRm6jk

At a time of critical illness, the process is lengthy, bureaucratic, and extremely stressful. Then comes months of waiting for a panel of expert clinicians to make a decision while their condition deteriorates. Blood cancers are fast-moving and kill quickly, so there would be gruelling cycles of chemotherapy – at great cost to the NHS – simply to keep the cancer at bay.

NHS England’s decision has been in the making for three years, and patients have had to make funding requests since 2013. But until now, with no clear consensus in place, doctors have had greater scope to argue in favour of a patient’s individual circumstances. Now that there is an official policy that the NHS does not fund second transplants, my application would most likely be rejected. I would then be offered palliative care instead – if I didn’t die during the waiting period.

Emma Paine, 29, from Peterborough had to wait four months for funding approval for a second stem cell transplant after she relapsed with myelodysplastic syndrome (bone marrow failure) last year. As a result, her recovery is not going as well as she had hoped. “There’s no doubt in my mind that my health would be better if we’d been able to start the treatment sooner,” she says. “During the waiting period I contracted four serious infections and lost all my muscle mass. I had difficulty sleeping and felt stressed about the decision. Why put a patient through all of that when they’re already ill?”

Related: A moment that changed me: the chance to use new life-saving cancer drugs

NHS England has to make decisions on a cost-per-benefit basis. I understand they believe that patients have a lower chance of survival after relapsing once – they think there is insufficient evidence to support funding this treatment. But Paine, a statistician herself, argues: “This is total guesswork. They’re rejecting people on the grounds of low success rates, but they haven’t got the data to do that, because the numbers of people who have second stem cell transplants are small.” Only about six patients this year in England who have relapsed over a year since their first transplant will have a second one, although this number would be about 16 if they were routinely funded.

Paine points out that the NHS can only gather significant data by funding second transplants for all patients. A recent study conducted in the US, where second transplants are routine, suggested that one in three patients will reach the five-year survival milestone after given this chance.

The NHS England analysis suggests that funding second stem cell transplants could be cost-neutral. If patients do not receive transplants, they are given alternative treatments – further chemotherapy or palliative care – the costs of which are difficult to quantify as they are highly variable and depend on the patient’s circumstances. However, the policy working group of clinicians, commissioners, patients and stakeholder organisations, including Anthony Nolan, which advised NHS England on the decision, looked at examples of two patients who didn’t receive a second transplant. These patients were estimated to have incurred costs of about £130,000 over a one-year period.

A stem cell transplant is a brutal form of treatment – a last resort with side-effects similar to those experienced by nuclear warfare survivors. Waiting to find a matching donor on the register is agonising. In one of the richest countries in the world, no one should have to endure the added trauma of being denied funding for a treatment that could save their life.

Can the NHS really not afford second transplants for cancer patients like me? | Hannah Partos

Injection To Exchange Heart Pumps And Transplants

A simple injection that promises to change heart transplants and other key cardiac surgical procedure is currently being examined on humans with heart pumps for the initial time.

The pioneering gene therapy will provide sufferers with a crucial enzyme that aids heart muscle tissues to pump blood.

The technique – which has previously been effectively attempted in animals and on human hearts in vitro, and is getting examined concurrently on patients with less severe heart failure – is to be utilized by scientists from Imperial University London on patients with advanced heart failure at Harefield Hospital.

The substitute gene, Mydicar, developed by US biotech firm Celladon, could assist hundreds of 1000′s of sufferers a year, and make heart transplants and mechanical pumps obsolete. Some three million individuals in the US and Britain endure from some degree of heart failure.

“The ideal treatment at present available is a heart transplant, but the shortage of donor organs indicates that numerous individuals will die on the waiting listing,” explained Dr Nick Banner, a consultant cardiologist at Harefield, who carried out the initial infusion.

A fifth of these waiting for a transplant in Britain die just before a ideal organ turns into offered.

Heart illness is a progressive sickness, usually initiated by harm or illness, in which the heart gets to be weaker as its cells malfunction.

Amid its triggers are large blood pressure, alcohol abuse, smoking, genetic defects and infections. Heart muscle cells can also be killed throughout heart attacks when their personal blood provide is lower off.

“Heart failure devastates the lives of hundreds of 1000′s of folks,” explained Professor Peter Weissberg, medical director of the British Heart Foundation, which is funding the trial. “This cutting edge trial offers real hope of an efficient therapy in the close to future.”

The gene therapy involves injecting a benign virus with copies of the DNA for SERCA2a, an enzyme that helps heart muscles to contract by recycling calcium.

Two dozen patients, all of them at present fitted with mechanical pumps, are enrolled in the review, of whom sixteen will get the gene. Biopsies of their heart muscles will be taken soon after six months to measure the gene’s spread and how effectively it is operating.

“We will be utilizing state-of-the-artwork strategies to achieve in depth info on how and in which the gene therapy will take impact, which will potentially assist us develop and enhance the treatment,” mentioned Professor Sian Harding, the head of the British Heart Foundation’s centre of regenerative medicine at Imperial.

Although the therapy entails the delivery of genes to the body’s cells, it is not correcting a genetic defect. “We are functioning much more downstream,” Professor Harding said. “No matter what the trigger of the heart failure, the treatment should be equally advantageous.”

The researchers will also test to see no matter whether the therapy functions in patients with antibodies to the wild vaccine currently being employed to supply the gene.

“We have adapted the wild virus by removing the viral genes and replacing them with the treatment method SERCA gene, so the virus acts like a biological courier to deliver our treatment gene,” explained Dr Alex Lyon, the lead investigator from the National Heart &amp Lung Institute at Imperial.

“This particular virus is beneficial since it is not identified to cause any human ailment. However this means numerous folks have been exposed to the virus without building signs and for that reason possess antibodies. If we demonstrate that the antibody does not block the delivery of gene therapy, numerous a lot more patients could advantage.”

Injection To Exchange Heart Pumps And Transplants

Organ transplants at record level

Even though specialists welcomed the rise, they mentioned that 3 individuals nevertheless die every single day in the United kingdom while waiting for an organ donation.

An NHS BT spokeswoman explained that there requirements to be a ”revolution” in societal attitudes in direction of donation so a lot more lives can be saved.

She stated that the proportion of households who agree to organ donation following the death of a family member remains ”stubbornly low”.

During 2013/14, much more than 4 in 10 households approached about organ donation stated no to donating a loved one’s organs, she mentioned.

She explained that people who consider they would like to donate organs in occasion of their death ought to allow their loved ones know their feelings just in case tragedy strikes.

NHS BT’s director of organ donation and transplantation, Sally Johnson, stated: ”We are actually grateful to the households of the 1,320 deceased donors and to every of the one,146 living donors who made transplants possible final year. Their donations ensured that for the eighth yr in succession, the amount of folks benefiting from an organ transplant elevated.

”However, we can not be complacent. Despite year-on-12 months increases in action, the Uk can and need to do a lot more to conserve and increase lives via organ donation and transplantation.

”Family refusal is our largest problem and it really is unhappy we lag so far behind some other nations in terms of consent/authorisation rates to donation.

”The truth is every prospective donor is precious and whenever a family members cannot carry themselves to donate individuals waiting for an organ may die.

”If you choose donating is the right factor to do, please signal up to be a donor and spell out your wishes to those closest to you. Then, ought to the time come, your family members will know you want to donate your organs to support to save other individuals.”

:: Folks can sign up to the Organ Donor Register by going to: www.organdonation.nhs.uk or by calling 03001232323.

Organ transplants at record level

Heavy drinkers to be deemed for NHS liver transplants

About a fifth of liver transplants already involve sufferers whose condition is linked to their drinking, which includes the late footballer George Very best. Photograph: Kieran Doherty/Reuters

People with a extreme drink-associated liver disease are to be considered for transplant for the 1st time, reopening the debate in excess of regardless of whether individuals who are considered to deliver ill well being on themselves deserve pricey therapy.

The determination by the NHS’s blood and transplant service (NHSBT) comes at a time when there is a national shortage of suitable organs, and amid concerns that donors would be reluctant to assistance schemes of this nature.

Well being officials concede they are acutely mindful of the sensitivities surrounding their selection, but argue that a pilot scheme is worthwhile. “We transplant humans, not angels,” NHSBT’s associate health care director James Neuberger advised the Guardian.

The new scheme concerns people with significant alcohol linked hepatitis (SAAH) who have been excluded from consideration due to the fact the prognosis was so poor. There is occasionally not enough time to judge the prospects of them giving up alcohol and they frequently suffer infection and bleeding as properly as getting deep jaundice and psychological confusion.

The sufferers the doctors are hunting to deal with in the pilot scheme have to be fairly young – between 18 and forty – seeing a physician for the first time with liver disease, and getting diagnosed with a drink dilemma for the 1st time.

There has been some concern amongst transplant specialists above the number of candidates they could have to assess, which includes for publish-transplant abstinence, and the influence on other individuals awaiting transplants.

Study suggesting that this kind of individuals may escape a speedy death via this kind of intervention persuaded the NHS to set up a trial involve 20 sufferers who may get up to two many years to recruit – a modest proportion of people with the disease.

Alcohol use was a “very complex and emotive region”, stated Neuberger. “We need to retain public self-assurance that organs donated are utilized properly. That trust has to be earned it can be misplaced very speedily. We have to operate difficult to ensure we are honest and that organs are utilised in the correct way.”

The move comes amid mounting concern above rises in deaths from alcohol-relevant liver disease. The Workplace for National Statistics unveiled in February that in England and Wales these had gone up from three,269 in 2002 to 4,265 in 2012, a rise of 18%. The most significant enhance – a third – was seen in men and women more than 60. Liver condition of all varieties is going up steadily, the only major ailment class in which premature mortality is growing in Britain whilst falling elsewhere in Europe, a trend that will mean steeply enhanced demand for replacement organs.

Already about a fifth of liver transplants involve patients whose liver situation has been linked to their consuming, such as the late footballer George Ideal.

The most current rethink was prompted by a study by a French and Belgian staff published in the New England Journal of Medication in November 2011 which reported encouraging outcomes amid SAAH individuals. It discovered early transplantation worked in some targeted sufferers, with 6-month survival prices of 77% amid 26 who had transplantation in contrast with 23% amongst patients who did not.

The transplant support normally lists people for transplant if they are expected to have a much more-than-50% opportunity of getting alive with a excellent high quality of lifestyle right after five many years. Its recommendations for those with drink-linked condition say prospective recipients must abstain from alcohol prior to transplant, and be required to continue to be abstinent for the rest of their lives.

Andrew Langford, chief executive of the British Liver Trust, said some people explained they would not donate organs because of the George Ideal situation or desired to be certain the organ would go to an individual who would seem following it.

Instead of seeking at the cause of a potential recipient’s condition, “we should be hunting at what their healthcare demands are and not be judgmental”, Langford said. Most liver condition was caused “a single way or one more” by personal selections.

“The vast vast majority of folks who have transplanted organs do search soon after them and lead a far healthier life,” he said.

Heavy drinkers to be deemed for NHS liver transplants

Four ladies provided pioneering womb transplants impregnated via IVF

The Swedish surgical staff practicising before the uterus transplant operations at the Sahlgrenska University Hospital in Gothenburg. Photograph: Johan Wingborg/AP

Four of nine girls given pioneering womb transplants in Sweden have now also had embryos transferred, the pioneering Swedish physician treating them has mentioned.

Dr Mats Brannstrom, professor of obstetrics and gynaecology at Gothenburg University, stated his crew had embarked on a programme of embryo transfer for the ladies, who have been either born with no a womb or misplaced it as a end result of cancer. All have ovaries so had been ready to create eggs that have been fertilised employing IVF.

Brannstrom predicted that 3 or four of the 9 females may possibly succeed in providing birth, which would be a planet first. Other womb transplants have taken spot in Saudi Arabia and Turkey but no recipients have but managed to have a kid. A pregnancy was accomplished in Turkey, but it failed after two months.

“We have already begun transferring embryos into 4 of the women and prepare to make attempts with the other individuals when they are ready,” mentioned Brannstrom. He would not say no matter whether any of the girls were pregnant at the moment. In a review published final week, the group mentioned that there have been “mild rejection episodes” in four females who obtained donated wombs. Two sufferers had to have the uterus eliminated since of problems.

Brannstrom’s approach is controversial because he is accepting wombs donated by living women, who are family members or buddies of his individuals. Elsewhere, wombs from dead donors have been utilised.

Dr Richard Smith, head of the United kingdom charity Womb Transplant United kingdom, which is striving to increase money to carry out transplants right here, has said that large chunks of blood vessels had to be eliminated from the donor as properly as the uterus itself, raising the dangers of the operation for the donor. In the United kingdom, there would be ethical inquiries since the operation is not a life-saving procedure, he stated.

The females will have to get medication throughout their pregnancy to make certain their physique does not reject the organ. They will also have to be watched carefully for how the womb progresses during pregnancy.

Dr Charles Kingsland, a spokesman for Britain’s Royal School of Obstetricians and Gynaecologists, explained: “There are questions about how the physiological changes in the uterus will impact the mother and no matter whether the transplanted uterus will be conducive to a increasing little one.”

Brannstrom stated the transplanted wombs would be removed soon after a maximum of two pregnancies.

Four ladies provided pioneering womb transplants impregnated via IVF