Trying to get reality into the NHS – rationing overtly
Category Archives: Good News
The implication of treatments for genetic diseases is good news for the UKs Regional Health Services (RHSs) but there will be a cost, and we may have to reduce the expectation for some years as safety is proven, Will we be able to afford the costs and still provide the high volume low cost free treatments for everyone? Will we be able to afford humane care for the elderly and demented? The pace of the advance of technology, and the demographics of old age, are exceeding our ability to cope.
Diseases such as muscular dystrophy, kidney failure and diabetes could be treated more gently after scientists developed a tool that “switches on” genes rather than cutting them.
In the past decade, genetics research has been revolutionised by a technique called Crispr Cas9 that uses a molecule to find a specific stretch of DNA. It then harnesses an enzyme to snip it and so delete or edit it.
The powerful technology poses serious safety concerns if used in humans because of the potential for it to go wrong. Many researchers are wary of cutting DNA because they could accidentally target the wrong bit.
American researchers, however, say they have found an alternative by modifying the Crispr Cas9 system. They describe a safer approach in a paper in the journal Cell.
“Cutting DNA opens the door to introducing new mutations,” Juan Carlos Izpisua Belmonte, from the Salk Institute for Biological Studies, said. “That is something that is going to stay with us with Crispr or any other tool we develop that cuts DNA. It is a major bottleneck in the field of genetics — the possibility that the cell, after the DNA is cut, may introduce harmful mistakes.”
Professor Belmonte and his colleagues use the same molecule to guide the enzyme to the target bit of DNA. Rather than cut it, though, they boosted it. They argued that this meant that they could amplify the signal from genes that combat diseases.
To test the theory, they used mice genetically modified to suffer from diabetes, kidney failure and muscular dystrophy. They then tried to reverse the progress of the diseases by activating genes to mitigate the effects.
It worked. They boosted insulin production, the mice’s kidneys improved, and those with muscular dystrophy saw muscle growth.
“We are not fixing the gene; the mutation is still there,” the professor said. This means it is not a cure, in the way that true gene editing would be. He said, however, that it was sufficient to harness the power already dormant in the genome to reverse the symptoms.
Other scientists welcomed the research. Helen Claire O’Neill, from University College London, said that the research was exciting. “This paper clearly shows the potential therapeutic viability of this technology in human disease models,” she said.
Alena Pance, from the Wellcome Sanger Institute, said that more work was needed to make sure it was safe.
“These results bring hope for a targeted gene therapy and widen the application of the technology,” she said.
“But it is a proof of principle where follow-up of longer term effects . . . are not examined. These issues would need to be investigated in depth before any application in humans is considered.
On the whole results vary with affluence/poverty. What a pity we in Wales cannot compare to the rest of the UK, and EU.
Cancer statistics show for the first time how quickly people are being diagnosed in different parts of Wales.
Experts say it is “encouraging” that people living in deprived areas have a similar chance of early stage diagnosis for cancers like breast, bowel, lung and prostate.
For breast cancer, 34.1% of women are diagnosed at stage 1 in Wales – more than 40% in Conwy and Gwynedd.
The lowest proportions are in Bridgend (29.2%) and Neath Port Talbot (25.6%).
For lung cancer, 11.6% of patients are diagnosed at stage 1 for Wales as a whole, with the highest proportions in Cardiff and the Vale of Glamorgan (just under 16%) and the lowest in Swansea and Neath Port Talbot (just over 8%).
The chart above shows the proportion of patients from different parts of Wales with cancer diagnosed when it is at stage 1 – usually when the tumour is at an early stage and relatively small.
Dr Dyfed Wyn Huws, Wisu director, said: “Across Wales, the diagnosis of lung cancer at an early stage has improved, and a higher proportion of prostate cancer cases are now recorded as early stage at diagnosis.
‘Best in Europe’
“At the same time, there has been little change in breast cancer early stage at diagnosis and for all stages of bowel cancer.”
The statistics also show older people have the lowest level of early stage diagnosis for breast, prostate and bowel cancer.
Tracey Cooper, chief executive of Public Health Wales (PHW), said: “It is encouraging that people from areas with higher deprivation have a similar chance to those from the least deprived areas of having their cancer diagnosed at an early stage for the key common cancers of breast, prostate, bowel and lung.
“However, while our cancer survival outcomes are broadly comparable to those of England, our long term aspiration is to become one of the best in Europe for our patients.”
Experts say they can focus on finding cancer that has developed at an early stage when treatment can be more successful.
“Which is why it is so important to take up the offer when invited to take part in the screening programmes for cancers of the breast, cervix and bowel,” added Chrissie Pickin, PHW director for health and wellbeing.
The NHS is under unprecedented pressure. Rising numbers of patients need hospital care – whether in an accident and emergency department, for cancer treatment or for planned operations and care, such as knee and hip replacements.
For each there are strict targets local services are expected to meet across the UK. But what are the chances of being seen in time where you live? Use our interactive tracker to find out.
Why for GPs and not other doctors? What is the governments attitude to “No fault compensation”? This is good news, but it looks like a reaction to the threat of losing General Practice as a speciality rather than a planned change in policy which could open up other opportunities. And its not just GPs who need cover. Hospital trusts and Regions are in deep financial do-do as their projected losses for litigation exceed annual budgets. Cleaning fluid included..
The health secretary will today announce plans for a new ‘state-backed’ indemnity scheme for GP practices that will see them paying a membership fee to have their fees covered.
As Pulse reported this week, Jeremy Hunt will tell delegates at today’s RCGP Conference in Liverpool that he is discussing plans to include the option of a new membership scheme into the 2018/19 GP contract.
Pulse understands that details around the cost of the scheme for practices and who it will cover are still being worked out.
It follows pressure from the profession and Pulse to tackle the problem of rising indemnity fees.
GP leaders gave the announcement a cautious welcome, but said more details on funding and who it will cover was needed.
Now this would be sensible rationing. The dispensing and container fees to the chemist are the main expense with Homeopathy, and few patients would rely on it for life threatening conditions. A private prescription seems sensible for those who believe in it enough, and of course it can be bought over the counter as it is entirely safe! Common sense rationing…
Sir, A sign in my local pharmacy asks patients to buy their own paracetamol, to save the NHS its much greater cost on prescription. If GPs are to prescribe homeopathic remedies, I hope to see a similar sign urging patients to obtain the same thing from the kitchen tap.
Sir, The only thing that Dr Fisher’s letter seems to show is that most patients get better or not despite their doctors, not because of them.
Alan Cohen, MBChB
Sir, The NHS ascribes any effect of homeopathic treatment to the placebo effect. I want to ask how it might be explained that, many years ago when my ten-year-old labrador became so stiff with arthritis that she could not jump into the car or rise from the slippery kitchen floor without help, the homeopathic remedy suggested by a friend enabled her to do both easily within a week. I gave her the pills until she died at 15, a grand age for a lab, and she remained reasonably active almost to the end of her life.
The Rev Mary Austin Droitwich, Worcs
Sir, Another way of expressing the contents of the letter from Dr Peter Fisher, editor-in-chief of Homeopathy, is that homopathic medication is simply cheaper than conventional medication (“NHS homeopathy”, Oct 3). This is because on the balance of probability a homeopathic medication contains not a single molecule of the supposedly active ingredient. Thus a tiny amount can go almost infinitely far — making it cheap to “treat” patients.
Dr Andrew Tay
The decision on assisted dying is to be welcomed, as is the news that diseases such as this could be edited out of society eventually using Crispr, but there is a cost, and patenting of the processes may mean costs are too high for many nations/systems. The news in the recent edition of the New Scientist is that a leukaemia gene can be edited for the price of $475,000 per patient. This blows NICE life – years valuation out of the water… But on the other hand, rich families will be able to afford the treatments… At last – common sense on the right to die with agreement of Dr and Family. But the cost implications of prevention, along with the ethical dilemmas and the religious rights objections, mean that helping the patient by “putting them at the centre of your concern”, will still be the main problem for doctors for decades to come. Even the insurers might object.
A judge has made a landmark ruling that legal permission will no longer be required by a court before life-supporting treatment is withdrawn from patients suffering from severely debilitating illnesses, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for more than 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter plus doctors caring for her all agreed that life support treatment should end……
Sir, The crux of the debate on assisted suicide is whether it is possible to grant some people the right to assistance in suicide without exposing others to subtle, malicious pressure to exercise it.
In 2011 Lord Falconer’s commission stipulated that a safe assisted-suicide framework required, first, safeguards “to ensure that the choice of an assisted death could never become an obligation and that a person could not experience pressure from another person to choose an assisted death without the abuse being detected”. Second, there had to be provision of “the best end of life care available”, including staff who would fully investigate the circumstances and motivations of any person seeking an assisted death and alternative options for treatment and care”.
In her book about the treatment of the elderly, Not Dead Yet (2008), Baroness Neuberger reported that in the UK 500,000 elderly people were being abused, two-thirds by relatives or friends. The Stafford Hospital scandal revealed that abuse of vulnerable patients is not limited to amateurs but extends to healthcare professionals.
So, we have no reason to suppose that we can “ensure” the absence of undue pressure to opt for assisted suicide and the presence of compassionate staff. Indeed, there is good empirical reason to doubt that such things can ever be guaranteed.
Judging by his own commission’s criteria, then, Lord Falconer’s Assisted Dying bill is, while well meaning, dangerously imprudent.
judge in a specialist court has made a landmark decision that will affect the relatives of terminally-ill people, lawyers say.
Mr Justice Peter Jackson ruled that a 50-year-old woman who had suffered from Huntington’s disease for 20 years should be allowed to die after a hearing in the Court of Protection, where judges analyse issues relating to people who lack the mental capacity to make decisions for themselves, in London.
The woman’s daughter and her doctors all agreed that life support treatment should end.
Mr Justice Jackson said that judges should not be required to make rulings in similar cases, where relatives and doctors were in agreement and medical guidelines had been followed.
Mr Justice Jackson said he could understand why the woman’s mother and doctors had asked for a ruling. But, he said, in a written ruling : “In my view it was not necessary as a matter of law for this case to have been brought to court.”
He published the ruling on Wednesday and said the woman had now died.
Specialist lawyers at Irwin Mitchell had represented the woman’s mother. They described Mr Justice Jackson’s decision as a landmark.
Genetic engineers have eradicated disease-carrying DNA from human embryos in a breakthrough that heralds a new era in medicine.
The achievement could lay the groundwork for doctors to eliminate hundreds of inherited illnesses such as Huntington’s disease, cystic fibrosis and sickle-cell anaemia with a single, permanent change to a family’s bloodline.
While implanting altered embryos in the womb is against the law in the UK and many other countries, some scientists forecast that the technology will become acceptable if the benefits of preventing these conditions outweigh their practical and ethical problems.
There are about 10,000 diseases that are caused by individual mutations and could in theory be fixed with the treatment, which is known as germline gene editing because it involves using chemical scissors to snip harmful DNA out of an embryo’s genome.
Biologists in the US, China and South Korea used a powerful form of the technique called Crispr/Cas9 to cut out the gene that causes one of the most common of these conditions, hypertrophic cardiomyopathy (HCM), from sperm cells as they fertilised 52 eggs from a single healthy woman.
This incurable disease, which affects one in 500 people, thickens and stiffens the wall of the heart, sometimes leading to shortness of breath, palpitations or abnormal rhythms.
Findings published in the journal Nature show that scientists were able to get rid of the mutation that causes about 40 per cent of HCM cases by injecting a tailored version of Crispr/Cas9 into the woman’s eggs at the same time as they introduced the mutation-bearing sperm.
It is the first time that researchers have edited the genes of embryos and then seen them develop normally, partly because the embryos appear to be able to repair their DNA cleanly by using the egg’s genome as a template.
Attempts carried out in China over the past two years failed because they resulted in so-called mosaic embryos in which some cells had been fixed while others carried the gene.
There is a long way to go before the treatment can be used in IVF clinics. Ethical questions aside, the findings will need to be repeated in eggs from other women, while politicians and regulators will need further evidence that it is safe before they can consider legalising germline editing in the real world.
Even then, it will play second fiddle to pre-implantation genetic screening, where doctors examine the DNA of a couple’s embryos to see if any are free of mutations. In practice gene editing would be most useful for would-be parents who cannot produce enough healthy embryos, particularly if they carry dominant gene-linked disorders such as Huntington’s disease, HCM, Marfan syndrome and neurofibromatosis, which makes its carriers prone to cancers of the nervous system.
Peter Braude, emeritus professor of obstetrics and gynaecology at King’s College London, who was not involved in the study, said: “The possibility of germline genome editing has moved from future fantasy to the world of possibility, and the debate about its use, outside of fears about the safety of the technology, needs to catch up.”
Designer babies — the last taboo
Scientists heave a collective sigh when they hear the phrase “designer babies”. The words conjure up an elite race of children whose genes have been customised with methods that are as technically implausible as they are ethically fraught.
This is not what most experts fear. The real risk is that one of these days, in a fertility clinic beyond the intense scrutiny that attends every step of embryo research in most western countries, doctors will quietly slice an inherited disease out of a few embryos’ genomes and nine months later announce the birth of the world’s first gene-edited baby.
We know this because we have been here before. Last year John Zhang, a US doctor, used a different but scarcely less controversial technique known as mitochondrial replacement to create a “three-parent” baby in Mexico.
The global scientific establishment was appalled, particularly as the UK was still putting the finishing touches to a pioneering system for licensing this kind of experiment after more than a decade of thorough debate.
The trouble is that no matter how carefully we try to control the science, there will always be places where even the best-laid laws cannot reach. There is not much that experts can do to hold back their colleagues if they are determined to defy international convention, particularly if they are prepared to do so in countries whose regulations are vaguer or more permissive than those in Britain and the US.
This is true not only of gene editing but also of many ethical frontiers that are being challenged by the breakneck pace of biological discovery.
Sandy Starr, of the Progress Educational Trust, a biomedical charity, said the technology needed to be considered alongside projects such as the creation of animals that contain human cells and the generation of sperm and eggs in a dish.
“All of these are potentially exciting areas of research,” he said. “They all require careful regulation, and they certainly require the widest public and international debate before we consider permitting any clinical applications.
“Of course it’s always possible that someone unscrupulous will jump the gun, go jurisdiction-shopping, and travel somewhere to use an experimental medical technique in an unethical way. Even if they do, and even if they evade legal judgment, we can still subject them to our own moral judgment and find them wanting. Indeed, it becomes all the more important for us to do so.”
I am still asked “how should I choose my GP practice”, and I usually give a guarded reply which amounts to “It depends what functions/services you value most”. Continuity of care is a rarity these days, and with more and more part time GPs the problem will get worse. Patients are not “ill” on days that suit a Dr working 2-3 days a week. Children are ill suddenly, and so practices where partners offer a daily surgery, albeit with a different doctor, are valued. One thing to consider is whether there is an “individual list” system, or a “shared list” system. In the former it can be harder to see your doctor, but it may be worth waiting especially for older patients with chronic conditions. In the latter system patients are often fitted in quickly but usually see a different Dr each time if it is an emergency (as defined by the patient)! Mothers of young children usually prefer this type of system, but not always. Does the practice have an active Patient Participation Group?Other things to consider are whether the practice is a teaching practice, what the turnover of staff is, and whether they have a QPA (Quality Practice Award) which is in date. If you know a family who have had a death recently, the quality of any palliative or terminal care is pertinent, but remember “dead patients don’t vote“. Despite all this, and the Care Quality Commission report, most patients will still ask their neighbours…
It’s a pity that we don’t know the quality of care for comparison in the other 3 UK health regions, thus emphasising that there is no NHS. Rather than reporting the bad news, the Times could report that 90% of GP care is good quality, and ask “Are you lucky enough to be in a post code with good GP care and good choice?” as many areas have reduced choices, even in cancer care.
Seven million patients are treated at GP surgeries with serious safety problems, according to the first comprehensive review.
Inspectors urged patients to switch to better performing surgeries after finding that one in seven had issues with safety and one in ten was not good enough overall.
They uncovered “pockets of persistent poor care” including out-of-date medicines, a failure to follow up on test results, delayed cancer diagnoses and a lack of checks on the medical qualifications of staff.
Smaller surgeries were more likely to do badly, the review showed, with the worst half the size of the best. They have been ordered to end “professional isolation” by linking with neighbouring surgeries to share resources and expertise.
The Care Quality Commission (CQC) has finished inspecting all 7,365 GP practices that existed when it started its revamped regime three years ago. Nine in ten were good or outstanding, significantly better than hospitals or care homes. It initially found that one in three was not safe enough, forcing inspectors to take action including shutting dozens of surgeries. One in seven still had safety problems, however, covering seven million patients, with 13 per cent “requiring improvement” and 2 per cent, with almost a million patients, “inadequate” for safe care.
“Safety is the one clinical area that we worry about,” Steve Field, chief inspector of GPs, said. “You find surgeries where they have lots of [test] results that haven’t been acted on, they might have out-of-date medication, their fridges might be at the wrong temperature so the vaccines might not work. It’s really poor leadership.”
Professor Field recently had to intervene to replace out-of-date emergency adrenalin that could have led to the death of a patient, he revealed. He urged patients to use ratings on the CQC website to switch to a better surgery. “I was in a surgery two weeks ago where they said they’d had 300 patients move to them because they were rated outstanding,” he said.
The average “inadequate” practice has 5,770 patients compared with 10,126 for the average “outstanding” one. Professor Field said that smaller places often found it harder to stay up to date, manage services well and employ nurses to help patients with long-term conditions. He said that most should be linked to other family doctors and social services. “I suspect that if you’re a weak leader but a good clinician and you’re part of a larger group, the quality of care will be better,” he said.
Ministers have promised GPs £2.4 billion as they struggle with rising patient numbers and Professor Field said that this had to get through before a “winter crisis”. Richard Vautrey, chairman of the British Medical Association GP committee, said: “These positive results are undoubtedly down to the hard work of GPs and practice staff, but many are in an environment where they are increasingly struggling to deliver effective care.”
The union has clashed with Professor Field, insisting that his inspections were not fit for purpose. Dr Vautrey insisted that the process “remains overly bureaucratic and continues to result in GPs spending time filling in paperwork when they should be treating patients”.
Jeremy Hunt, the health secretary, said: “Nearly 90 per cent of GP surgeries in England have been rated as ‘good’ or ‘outstanding’ — and that is a huge achievement for GPs given the pressures on the front line.”
What do we know?
Every GP practice has an overall rating shown on the CQC website
Each practice is also given sub-ratings assessing whether it is safe, clinically effective, caring, responsive and well-led
The NHS GP patient survey assesses whether people would recommend their surgery, whether GPs give them enough time and whether they see the same doctor
There is little other official data on GPs
Patients can post ratings on websites such NHS Choices