Half-hearted crackdown on NHS practice of killing off the elderly
The Nazi-like “Liverpool pathway” should be completely banned — Beneath the BS, it is just a money-saving exercise akin to Hitler’s practice of killing off “useless eaters”. The elderly should certainly be given pain relief but making them die of thirst is animalistic
No patient should be consigned to the controversial NHS process to help the dying in their final days without the involvement of at least two doctors, experts urged yesterday. They said the most senior staff available must be involved because ‘it is not always easy to tell whether someone is very close to death’.
The demand for the highest possible level of supervision of patients on the Liverpool Care Pathway follows allegations that the system is being used to kill off sick people before their time – effectively officially sanctioned euthanasia.
Under the pathway, patients judged to be days or hours from death can be denied water or nutrition through a tube, may be heavily sedated, denied treatment that could prolong life and not given any unnecessary tests or treatment.
It was developed by specialists in Liverpool in the late 1990s to ease the distress of the last hours of dying patients and is now used across the NHS. At the moment, only one duty doctor is needed to approve its use.
Yesterday’s demand for better supervision of those on the LCP follows claims that 130,000 patients a year are being killed off prematurely.
Consultant neurologist Professor Patrick Pullicino said in the summer that the Liverpool process had become an ‘assisted death pathway’ and that putting a patient on it is a ‘self-fulfilling prophecy’.
He claimed the system was being used to get rid of difficult-to-manage elderly patients and to free beds to make room for new patients.
A number of other senior medical figures have questioned the removal of nourishment and hydration by tube from some patients, and one pressure group has begun issuing cards to patients that tell hospitals they do not want to be put on the Liverpool Care Pathway.
The call for at least two medical staff to assess patients – one of whom should be the most senior on duty – was issued in a ‘consensus statement’ by 20 bodies including the Royal College of General Practitioners, the Royal College of Physicians, the National Council for Palliative Care, pressure groups including Age UK and the Alzheimer’s Society, and the Royal College of Nursing.
They said the LCP could bring ‘substantial benefits to people who are dying and their families’.
The statement added: ‘It is not always easy to tell whether someone is very close to death – a decision to consider using the pathway should always be made by the most senior doctor available, with help from all the other staff involved in a person’s care. It should be countersigned as soon as possible by the doctor responsible for the person’s care.
‘People should be involved in decisions about their care if possible and carers and families should always be included in the decision-making process.’
The statement also said that the withdrawal of fluids and food by tube was not always necessary.
The pathway, it said, ‘does not preclude the use of clinically assisted nutrition or hydration – it prompts clinicians to consider whether it is needed and is in the person’s best interest.
‘We support the appropriate use of the Liverpool Care Pathway and make clear that it is not in any way about ending life, but rather about supporting the delivery of excellent end-of-life care.’
But Professor Pullicino, who works for East Kent Hospitals and teaches at the University of Kent, has warned that putting patients on the LCP is fraught with difficulty because it is not scientifically possible to predict whether someone is going to die in three or four days.
He added: ‘If we accept the pathway we accept that euthanasia is part of the standard way of dying, as it is now associated with 29 per cent of NHS deaths. ‘Very likely many elderly patients who could live substantially longer are being killed by the LCP.’
Ministers and NHS chiefs back the process. In June health minister Lord Howe said that it was not a means of withholding treatment, including hydration and nutrition, but was used to ‘prevent dying patients from having the distress of receiving treatment or tests that are not beneficial and that may in fact cause harm rather than good’.
He also told the House of Lords: ‘I recognise that some people who have been on the Liverpool Care Pathway have received poor care. It is in no way a replacement for clinical judgment and should not be treated as a simple tick-box exercise.’
Getting cancer drugs out of the NHS is often a huge bureaucratic battle
When you’re told ‘You have cancer’, it can seem the most shattering news you could possibly receive. But many patients are then told something infinitely worse: ‘There is a treatment — but we can’t afford to give it to you.’
Rose Woodward, 61, has dedicated her life to fighting to get such people a bit of good news.
Rose, from Porthtowan, Cornwall, has spent the past nine years voluntarily helping patients fight for funding for life-extending drugs, and has also successfully campaigned for new treatments to be made available on the NHS.
Though she has no formal legal training, Rose has helped mount more than 230 appeals against health authorities — and has won 90 per cent of the cases.
‘I had no previous experience of doing anything like this — but, to my surprise, I’ve found I have a voice and can stand up for people,’ says Rose, who is herself a cancer survivor.
‘The NHS doesn’t tell dialysis patients or road traffic accident victims that they’re not worth spending money on, so why should cancer patients be singled out for drug rationing?’
Rose was diagnosed with cancer at age 51. After suffering heavy menstrual bleeding, she had a scan to check her ovaries — a 7cm tumour was then found on her left kidney. Surgery to remove the kidney was successful, and thankfully she has been cancer-free since.
But after her doctors admitted chemotherapy and radiotherapy weren’t suitable for her cancer, and that no other drugs were available, she kept up-to-date with new treatments.
In 2004, she started reading postings on the internet from kidney cancer patients in the U.S. about a new drug called Sutent, which works by restricting the blood supply of tumours.
‘It seemed a real breakthrough, as it was the first drug specifically for kidney cancer,’ says Rose, a former transport manager, who lives with her husband Ron.
‘Back then, doctors in the UK weren’t telling patients about Sutent because they didn’t want to raise their expectations about getting it. ‘You could only access it on clinical trials, or buy it as a private patient. At the time, it cost £2,643 for a six-week cycle. ‘But my feeling was that people should be told about it. The data said Sutent could double life expectancy, from 12 months to 24.
‘I didn’t need it myself, but I couldn’t rule out that I might need it in the future. Besides, for many patients it was their only hope.’
Rose began to spread the word about Sutent through an online patient group she set up, Kidney Cancer Support Network, posting updates on research trials and fielding questions from patients trying to access the drug.
In 2005, she heard a breast cancer patient called Julia Black speaking on a radio phone-in, and got in touch with her. Julia had campaigned for the drug Herceptin to be made available on the NHS.
‘We instantly hit it off,’ recalls Rose. ‘We both felt passionately that patients should have access to new cancer drugs.
‘We were soon phoning and emailing daily, though it was to be two years before we met face-to-face, as Julia lives in Shropshire. But we worked together on a dossier of clinical information on the trials in the U.S.’
Julia had a friend with kidney cancer who was fighting for access to Nexavar, another kidney cancer drug. He spent his £70,000 life savings on the treatment, travelling to Germany to have it.
Rose and Julia fought three appeals before East Lancashire Primary Care Trust eventually agreed to fund his treatment in the UK. Their friend died in October 2007, but lived 18 months longer than his doctors had originally predicted.
After this victory, oncologists began putting other patients in touch with Rose and Julia — and things snowballed.
‘Patients started asking for advice on how to make an exceptional funding appeal,’ says Rose. ‘We helped them write the letters, construct a legal argument and gain access to medical records and relevant clinical trial data to build their case.
‘We also used the Freedom Of Information Act on their behalf to put in requests to primary care trusts (PCTs) for specific information that might help their case, such as what drugs the PCT had previously funded.’
In some cases, patients who were desperately unwell asked Rose and Julia to represent them at exceptional funding hearings, where patients faced a panel of clinicians and administrators. The patients had to prove there were exceptional circumstances justifying why they should be given access to a specific drug.
‘I found I had fire in my belly,’ says Rose. ‘I was so angry at the way PCTs were treating these people — playing God and deciding whether they lived or died. They were bureaucrats, not doctors, and were accountable to no one.
‘Some PCT executives were getting bonuses of £40,000 a year. ‘Surely that money would have been better spent on cancer drugs? Their attitude was that it wasn’t worth wasting public money for the sake of extending life for a few weeks — but the evidence coming through was already showing that people were surviving many months, and even years.’
Soon Rose’s phone was ringing day and night with patients desperate for help.
‘Sometimes, a patient would call and say they had an appeal in two days’ time and could we help them? We always did — even if it meant staying up until 2am drafting advice and compiling information to help their case.’
Rose and Julia soon got a name for themselves as trouble-makers, and Rose says she was sometimes banned from hearings.
The work was voluntary and Rose and Julia had to meet their own phone bills and travelling costs. Rose and Ron were living off modest occupational pensions.
She admits money was tight, with phone bills of more than £250 a quarter, but she and Julia were adamant they wouldn’t take drug company funding should it be offered (it wasn’t), as they felt it would make them less credible.
Sutent was licensed for use in the EU, but here the health watchdog NICE (National Institute for Health and Clinical Excellence) turned it down in 2008. Rose, Julia and other network members organised a protest on the steps of the NICE HQ in London.
The following year, NICE relented and made Sutent available on the NHS for all kidney cancer patients — a huge victory for patient power.
Rose is convinced the health service changed its stance because of the glare of the media spotlight. She says: ‘There was no new clinical evidence — it was just they found themselves having to justify their decisions to the public.
‘One of the Cornish patients I represented in 2007 is still alive five years later after winning his case for Sutent funding, and there are many others like him.
‘Of course patients have died — Sutent merely extends life — but many of them had precious extra months with their families.’
However, while access to life-extending drugs has improved greatly since the government set up the £200 million-a-year Cancer Drugs Fund in 2010 to enable patients to have access to drugs they need, Rose is still fighting battles on behalf of cancer patients.
In most areas, patients can now apply directly to one of ten Cancer Drugs Fund panels of doctors at regional strategic health authority level for fast-track drugs. ‘But in some parts of the country, patients still have to apply to panels at trust or hospital level first — and these panels have administrators as members as well as clinicians,’ says Rose.
‘My work is now taken up with the patients who still have to apply to local panels. It’s frustrating they still have to deal with this level of local bureaucracy.
‘Today we have 450 people signed up to our organisation who swap information and support each other. It’s now called the Cancer Support Network because we represent all cancer patients.’
Alongside her voluntary work, Rose has started a paid job with the Rare Cancers Foundation.
‘We can’t give up because cancer patients are still being denied treatments,’ she says. ‘I’m going to carry on rattling cages because I believe they are entitled to these new treatments.’
British school bans parents watching sports day without criminal record check
A school has banned parents from watching their children take part in sports events – unless they pass a criminal records check.
The Isambard Community School in Swindon, Wilts., insists all parents must clear a Criminal Records Bureau check to weed out potential paedophiles.
Neil Park, 54, was furious when he was turned away from watching his son George, 12, play rugby.
The father-of-five said: “I was turned away from the school because I had not been CRB checked.
“I couldn’t believe it. Government guidelines state that parents are allowed to watch games.
“But any strangers can be questioned and requested to show the appropriate paperwork, which is fair enough.
“George was really upset by it all. What are they going to stop you going to next? Parents’ evening? The school play?
“Or what if England under 16s are playing at the County Ground , will they ask all fans there to be CRB checked?”
The school introduced the new measure at the start of the term to prevent strangers from accessing other parts of the school from the playing fields.
A spokesman said: “It is with regret that from now on we will be unable to accommodate parents wishing to spectate at our sports fixtures unless they are in possession of an up-to-date Swindon Council CRB check.
“At Isambard we take safeguarding very seriously and because of this we are unable to leave gates open for access to sporting venues at anytime during the school day.
“The current access arrangements are frustrating for both Isambard staff and parents and have recently resulted in reception staff and PE staff being on the receiving end of verbal abuse from parents who have become frustrated trying to get into or out of the school.”
Other schools in the area have no plans to implement this new policy however.
Clive Zimmerman, head at Lydiard Park Academy, Swindon, said: “We don’t have that policy here because there are always staff supervising the children.
“We think it is important that parents can support their children.
“We had our inaugural hockey game at the Link Centre this week, and half of that stadium was filled with parents which is fantastic.”
British Wind farms given £34m to switch off when the wind is strong
Wind farm operators were paid £34million last year to switch the turbines off in gales. Two days last week saw householders effectively hand £400,000 to energy firms for doing nothing.
The arrangement compensates wind farms for the National Grid’s inability to cope with the extra energy produced during high winds.
The exact structure of the payments is mired in secrecy – even though families have to carry the cost in the form of higher power bills. Hidden payments discovered by the Mail show that wind farms are given much more money than previously thought.
It was always known the National Grid made ‘constraint payments’ – cash given to operators to temporarily shut down their turbines when electricity supply outstripped demand.
But what was not made public were details of so-called ‘forward trades’, in which the National Grid agrees a pay-out when the weather is expected to be stormy. The money is paid out even before a turbine shuts down.
Limited information about the forward trade deals is published in an obscure section of the National Grid website – and in a format that even energy experts have struggled to interpret. The National Grid has admitted £15.5million was paid out to energy operators in the form of conventional constraint payments in 2011-12 in England and Scotland.
But for the first time it has emerged that an even greater sum – £18.6million – was paid out in forward trades. It means the total payments for that year were £34.1 million, far higher than previously reported.
Lee Moroney, of the Renewable Energy Foundation, said: ‘The UK electricity market needs to become very much more transparent.
‘Wind farms are already heavily subsidised and it is only right that all payments made to wind farms to reduce output are in the public domain, so that consumers, who ultimately bear these costs, are able to judge whether the charges are reasonable.’
Murdo Fraser, a member of the parliament in Scotland, where many wind farms are sited, said: ‘Why have the authorities been so anxious not to release this information? Is it because they feared this would undermine any remaining public confidence in renewable energy policy? ‘People will wonder if they were trying to cover up the truth.
‘The revelation that vast sums are being paid to wind power developers will just lead to more and more people questioning government policy.’
Details of which energy firms scooped the money is kept secret because of ‘commercial confidentiality’.
Although the figures cover all forms of power generation, including coal and gas, energy experts say the overwhelming majority relates to wind energy.
On Monday and Tuesday last week, when it was exceptionally windy, the National Grid said it paid £16,118 in compensation. But only when prompted by the Mail did it admit the true figure – including forward trades – was £387,000.
Yesterday National Grid spokesman Chris Mostyn said: ‘We have a number of tools available to help us balance the network minute by minute and keep the lights on, and constraint payments are just one of those tools. ‘Our incentives are set by the regulator to operate the network as cost-effectively as possible, and it currently makes up less than 1 per cent of the average domestic bill.
‘We are always working with the industry to improve and develop the way we operate the Grid, as well as investing millions of pounds in the coming years to help move the power to where it’s needed.’
Up to 32,000 wind turbines could be built in England and Wales over the next 40 years to meet government targets. Many of the existing sites are owned by foreign firms which have made record profits in recent years.
British over-40s denied free IVF can now sue NHS thanks to new law to prevent age discrimination
Since IVF is expensive, the NHS is broke and more than 85% of procedures for over-40s will be wasted, this would be one of the more deplorable uses of anti-discrimination laws
Women in their 40s can sue the NHS from today if they are refused free fertility treatment. A new law allows patients to take legal action if they are denied health care on the basis of age.
It is largely intended to protect the elderly from being written off by doctors because they are deemed too old. But the Government has confirmed that the same rules apply for IVF, which the health service currently restricts to women aged 23 to 39 [As it should].
The NHS rationing body NICE is considering raising its upper limit for treatment to 42 but a decision is not expected until next year. Some health trusts simply set their own rules and refuse to pay for IVF for anyone over 35.
Health minister Norman Lamb said older women refused treatment could take their NHS trust to court and challenge the decision. But they would need to argue that the treatment would be effective in spite of their age, and there is no guarantee the court would reverse the decision.
There is widespread evidence that a woman’s fertility declines quickly in her 40s, so the chances that treatment will be successful are slim. Each course of IVF costs the NHS about £3,000. Only 17 per cent of women aged 40 to 42 having the treatment become pregnant, and the odds decrease further with age.
Mr Lamb, the recently-appointed minister for care and support, said: ‘If an older woman sought to argue she should have access to treatment on the NHS she can challenge it, but she would have to show that the upper age limit was not objectively justified.
‘What I’d say generally is that if people in any condition feel that a judgment can’t be justified, and feels arbitrary, then they should challenge it because we should always be making our judgment in the health service on clinical need.’
The Mail is aware of at least one woman who is preparing to take her primary care trust to court after being refused IVF because she is deemed too old. This trust, NHS Oxfordshire, will not fund treatment for anyone over the age of 35. The woman concerned is 38.
The new age discrimination law allows elderly patients, and their relatives, to claim compensation if they have been subject to poor hospital care.
They may also take legal action if they believe they have been refused life-saving cancer treatment, hip replacements or cataract surgery because doctors think they are too old.
Patients, or those acting on their behalf, will first have to complain to the hospital and if they are not satisfied, to the health service ombudsman. If they are still unconvinced that appropriate action is being taken against staff, they may go to a county court.
Depending on the severity of the case, patients and families could receive compensation, although ministers do not yet know how much will be awarded.
Mr Lamb said: ‘It gives legal force that people have to be treated as individuals, and not written off because of an arbitrary age limit.’
It is not clear what will happen to doctors or nurses accused of age discrimination but they are unlikely to be face immediate disciplinary proceedings.
Simple scratch could double success of IVF treatment
This does sound like a huge advance
A straightforward 15-minute procedure costing less than £100 could double the success rates of IVF. British researchers found that gently scratching the lining of the womb a month before IVF treatment improved the chances of pregnancy. A review of research on the technique found that twice as many women became pregnant after the procedure than without, boosting pregnancy rates to almost one in two.
Doctors at Guy’s and St Thomas’ hospital, central London, are carrying out a larger trial to establish the overall efficacy of the technique with the hope of offering it routinely within three to five years.
It is thought that scratching the womb lining stimulates growth factors and repair mechanisms that allow the fertilised egg to embed more easily.
It takes only 15 minutes in clinic, can be carried out by trained nurses and uses simple equipment already in use. The procedure may add less than £100 to the average £4,500 cost of a cycle of IVF treatment.
Dr Tarek El-Toukhy, who led the review study, said: “Endometrial scratching uses simple, inexpensive equipment that most hospitals already have and which clinicians are already trained to use, so complications are rare.
“It’s exciting that the chance of pregnancy could be doubled. The next step is to see if this applies to birth rates. About a third of IVF treatments result in a baby, so improving these odds would make a big difference to people trying to have children through IVF.”
The findings from the review of eight studies involving 911 patients are published in Reproductive Biomedicine online.
In the review, 128 out of 499 women who did not have the womb procedure became pregnant — almost 26 per cent. Of the 412 women who had the procedure, 198 fell pregnant, or 48 per cent.
There were no serious side effects reported and early signs are that the doubling in rates will be translated into birth rates.
The women in the study had all suffered repeated unexplained implantation failure, meaning other aspects of their fertility seemed normal but the egg did not implant properly in the womb.
Maha Ragunath, the clinical director of Care Nottingham, the biggest private provider of fertility treatment in England, said the technique should be offered widely to all IVF patients in the near future. She has begun carrying out the procedure for patients who have suffered repeated failed cycles of IVF.
“This is really priming the womb to receive the embryo,” she said. “It is a bit like having a smear test for cervical cancer. It is very quick and simple.
“I think any doctor reading the review would want to at least talk to their patients about this procedure.
“There is obviously something to be gained from it, no long-term damage and it is so inexpensive, so why not?”