The cancer survivors left scarred by bungled operations to rebuild their breasts
When Kay Haslam was told her breast cancer had spread and she needed a mastectomy, her immediate reaction was to ask when she could have reconstructive surgery.
‘I wasn’t desperate, but I was interested in whether reconstruction would be possible as I have always taken a pride in my appearance,’ says Kay, 59, a former British Airways cabin service director.
She first discovered she had breast cancer in July 2007. Tests then revealed the cancer had spread to other parts of her breast.
Her doctor told her it was possible to rebuild her left breast using muscle from her left shoulder at the same time as having a mastectomy — and give the cancer-free right breast a lift, too, so she had a ‘matching pair’.
‘I couldn’t believe I could have both done at the same time — I thought it was brilliant,’ says Kay, who lives with her husband, Redvers, in the Cotswolds.
But things went horribly wrong. The surgery, in September 2007, left her breasts uneven, with the left smaller than the right and positioned so it was almost under her armpit.
Moving muscle from her shoulder to reconstruct the breast also caused nerve damage, leaving her in such excruciating pain that she has been on prescription painkillers and morphine patches ever since.
She has undergone seven further operations and attended more than 200 appointments with surgeons, pain specialists and physiotherapists to try to put the problems right.
It may sound like terrible luck, but Kay is one of a worrying number of women left disfigured by reconstruction procedures following breast cancer treatment.
Experts warn that many of these procedures are being carried out by surgeons with limited experience in cosmetic surgery — and hospitals, under pressure to meet targets, may be rushing women into making a decision and failing to offer them all the options.
Kay says she was like a ‘scared rabbit’ when her surgeon discussed her operation. ‘It all happened so quickly and decisions just seemed to be rushed through,’ she says.
‘I never received a leaflet about the procedure or information about any of the other types of reconstructive surgery, which I now know exist. I have taken more time deciding where to plant a tree in the garden.’
Around a third of the 14,000 women who undergo a mastectomy each year choose to have reconstructive surgery. Two-thirds of these have it at the same time as the mastectomy.
Guidelines by the government health watchdog NICE (the National Institute for Health and Clinical Excellence) say all women undergoing a mastectomy should be offered the surgery as an all-in-one operation — unless there are medical reasons for not having a reconstruction.
This is because surgeons can achieve a better cosmetic result, as they are able to hollow out the tumour area and then use the woman’s skin to rebuild the breast, which is taken away if reconstruction is not done straight away.
Research shows that for many women, immediate reconstruction has physical, emotional and psychological benefits.
But a survey carried out in 2010 of 7,000 NHS and private patients — the third National Mastectomy and Breast Reconstruction Audit — found that around 15 per cent of reconstruction patients will have some kind of complication, and one in six women has further treatment or surgery.
One in five is not satisfied with the size of their reconstructed breast in comparison to their unaffected breast.
Fazel Fatah, a consultant plastic surgeon at City Hospital, Birmingham, and president of the British Association of Aesthetic Plastic Surgeons, says that since all women’s bodies are different, some operations will be more suitable than others.
‘It is vital that every patient is offered breast reconstructive surgery, and told about the range of possible procedures, with their pros and cons,’ he says.
According to a 2008 audit, only 28 per cent of hospital breast units have a plastic surgery unit working alongside them, with the expertise to offer the full range of reconstructive techniques.
The rest use general surgeons with a sub-specialty in breast surgery, who, while able to remove the cancer from the breast, may have limited reconstruction training.
‘Some women are being offered a basic reconstruction when there are more advanced ones available that would give them a better result,’ says Mr Fatah.
Other experts agree. ‘We need more training for oncoplastic surgeons in breast reconstruction to raise the range of surgery options,’ says Professor Jerome Pereira, consultant breast surgeon at the James Paget University Hospitals NHS Foundation Trust in Great Yarmouth, and one of the audit authors.
NICE states that all suitable breast reconstruction techniques should be offered, even if they are not available at the local hospital.
These include using an implant, an expander (a deflated implant that is pumped up once inside the body), or skin, muscle or fat from other parts of the body to rebuild the breast.
But with doctors needing to provide the first definitive treatment within 31 days of a breast cancer diagnosis in order to meet government targets, there is a perception that decisions about reconstruction are rushed.
Indeed, while surgeons say they get the best results when women have immediate reconstruction, research from last year’s audit suggests that women who delay having the surgery tend to be happier with the results, possibly because they have a more realistic expectation of what the new breast is going to look like.
Anna Beckingham, who runs support group Keeping Abreast, says there is a postcode lottery in breast reconstruction. She had a mastectomy in 2007. ‘Luckily for me, we have really top plastic surgeons in Norfolk, where I live. I did a lot of research and I’m happy with my results.
‘As far as we know, the failure rate is low, but there are areas where people can’t access a plastic surgeon and they’re not told they can go somewhere else.’
Her group arranges ‘flashing’ sessions where women who have had a mastectomy show the group their breasts so they know what to expect. ‘We want to remind women that this isn’t a boob job — it’s surgery to remove a cancer, and so it can be a bit of a shock,’ says Anna, 42.
Kay Haslam says her surgery left her looking like ‘a Picasso painting’. ‘Sadly, I was advised to have a type of reconstruction that probably wasn’t right for my body.’
She has taken legal action against her surgeon, claiming the advice he gave her was sub-standard and the surgery itself was performed with substandard care.
She received an out-of-court settlement, though the surgeon did not admit liability for the surgery.
Jennifer Emerson from Irwin Mitchell solicitors, which represented Kay Haslam, says: ‘We are working with an increasing number of breast surgery patients (cancer surgery and cosmetic cases). ‘The issues of poor advice and insufficient time to fully consider the available options is something that happens all too often.’
Samantha Brick again
A comment below from Australia. He says that the “nuclear” global response to her has proved her point.
Like most people, however, he seems to have missed the point that she intended to write in a light-hearted way, hence the apparent narcissism. But the topic was such a fraught one to many that it all came across as deadly serious
As the body count has grown on the streets of Syria, and the people of Burma have enjoyed their first taste of democracy, the number-one issue which has dominated the opinion pages in the western world this past week has involved a column by an English woman called Samantha Brick who is worried about being too pretty.
Brick, a regular columnist with London’s Daily Mail, set some sort of world record for self-absorption with a 1000-word rumination on the curse of being attractive, specifically taking aim at her female friends (and ex-friends) for being intimidated by her apparently stunning looks.
The column was a shining demonstration of first world problems. Brick talked about how she dreaded going to dinner parties and would even dress as a frump so as to not show up the other poor women in attendance, who even then would pale in comparison to her untameable beauty.
“I’m tall, slim, blonde and, so I’m often told, a good-looking woman,” Brick wrote. “I know how lucky I am. But there are downsides to being pretty — the main one being that other women hate me for no other reason than my lovely looks. “
Much of the discussion around Brick’s column has centred on the point that she appears to be labouring under a serious delusion about how hot she is. The one passage of her column which really resonated with me was her brief and uncharacteristically modest disclaimer that she’s “no Elle Macpherson”. On this point she is dead right. Still it is probably best not to dwell on the matter of her looks as her husband, a fiery Frenchman by the name of Pascal Rubenat, has now threatened to kill anyone who ridicules her appearance.
It will be quite a massacre as in the week since she put pen to paper Brick has been the subject of tens of thousands of tweets and dozens of newspaper columns pointing out that she is no oil painting.
In a perverse way the nuclear global response to Brick’s column has proved her central point – that if you are attractive, or if you are simple happy with your looks, you will invite pure hatred from those who are unhappy with their looks or possessed of inferior looks, and that the hatred will come with most venom and intensity from fellow women. However vain and inane Brick’s column was in its execution, it has worked (possibly accidentally) as a demonstration of the body image issues and questions of appearance which bend so many women out of shape.
It is all a bit hard to fathom as a bloke because one of the defining features of being a man is that you don’t fret about your appearance, and you don’t care or even notice what your mates are wearing, or whether they’ve gained or lost a few kilos. When it comes to our appearance the best we generally hope for is the ability to “scrub up alright”, a self-deprecating phrase which suggests that looking good is still not that big an issue anyway.
It’s one of the reasons that men in the public eye who obsess about their appearance, such as the metrosexual Michael Clarke or the man-scapers at the St Kilda Football Club, will be regarded by other blokes as prissy and weird.
Brick’s point about the way women treat each other was beautifully demonstrated on Q and A a few weeks ago, bizarrely enough by the mother of modern feminism, Germaine Greer. By way of a bizarre non sequitur, Greer concluded a negative critique of Prime Minister Julia Gillard by attacking her dress sense and body shape, saying: “You’ve got a big arse Julia, just get over it.” As an amusing aside on the night the program was aired someone inside the ABC’s studio covertly pegged off a close-up photograph of Greer’s backside on their iPhone when the panellists were backstage having drinks.
The image suggests that when it comes to bum size Germaine Greer is standing in a glass house armed with a bucket of rocks. Setting that schoolyard point aside, Greer’s comments that night strongly endorsed Brick’s point about the way women treat other women.
Beyond that though is the bigger issue of the mindless self-absorption and superficiality which defines our culture. Brick might have had a valid point in her column but it still seems remarkable that she would choose to write about it in such an incredibly up-herself fashion, and then feign amazement at the ferocity of the reaction.
The reaction is still amazing though – hundreds of thousands of words across social media, independent blogs and mainstream newspaper pages. The fact that people care about this issue at all suggests that we have all got far too much time on our hands, and are in desperate need of something serious to worry about.
Britain’s Tory party has lost sight of its true values — ‘Decontaminating’ the brand has alienated voters – but there is a way back
The latest polls will not make for happy reading in No 10. After a torrid post-Budget fortnight, Labour has a strong lead. If there was an election tomorrow, they would be returned with a big majority.
In 43 years as a volunteer for the Tory party, I have always believed that the values of our activists have been at the heart of our electoral success. Yet, in recent times, there has been an almost evangelical focus on the “modernisation” or “detoxification” of the Conservative brand. The result has been a growing disconnect between the party leadership and the grassroots, and a loss of clarity, principle and policy direction.
The Conservative Party has, at its best, always been radical and reforming. Under Disraeli and Shaftesbury, it introduced social reforms before Labour even existed. But “detoxification” saw us ignore issues where we were clearly in tune with the voters, such as immigration and Europe. Even just talking about them was seen as reinforcing the supposed “nasty party” image and alienating voters.
In fact, this approach weakened our appeal among large sections of the electorate. Even against a discredited Gordon Brown, in the midst of an economic crisis, modernisation failed to produce the election victory it was meant to secure. The Tories not only failed to win over new voters but failed to win back more than three million who supported us in 1992. This was due to a lack of clarity about our values, and a lack of understanding of the electorate’s aspirations.
What can we do about it? First, the party needs to have the courage to stand up for its traditional values. If we stop, voters – at best – forget what we stand for. At worst, they think we stand for nothing but getting into power. We should be unashamed about promoting our ideals and principles. Most voters want controlled immigration. Most oppose further European integration. Most share our support for freedom under the law and free markets, and recognise the importance of opportunity and social mobility. These are all inherently Conservative values. So, in the Budget, we should have had the courage to say that cutting tax for the low-paid and cutting the top rate were not alternatives, but two sides of the same coin. We should have stated plainly that axing the 50p rate will increase revenue, create jobs and drive growth.
Second, we need to re-establish the Conservatives as the party of aspiration: the kind that in the Eighties led to more home and share ownership, more new businesses, and the re-emergence of pride in our country. Tragically, for most of the Blair years we allowed Labour to portray itself as the party of aspiration. Unless we take practical steps to show voters that we understand and share their hopes, many of those who voted Tory two years ago will come to regard the party as out of touch.
To reconnect with its values and its voters, the party leadership must also re-engage with its members and activists. In the short period since the election, membership has fallen significantly. Why?
One reason is that we give people so little incentive to join. Once, members could table motions for party conference and shape party policy. Now, conference is no longer a forum for debate but an exercise in media management. Until recently, members could always choose their local candidates. But under the open primary system, an ordinary voter has the same say as a paid-up member. What is the point of paying to join when you can get the main benefits for free?
Then there is the significant decline in contact between the leadership and the grassroots. Every year at conference, Margaret Thatcher spent two hours receiving cheques from local treasurers. No amount was too small for a personal thank-you: a £50 cheque from a small branch in the Welsh Valleys was received with the same gratitude as £25,000 from a wealthy association in Surrey. This commitment paid huge dividends in terms of volunteer motivation and engagement.
Of course, Thatcher had a majority, and perhaps some compromise is essential in coalition. Yet being in coalition means it is more, not less, important that the party does not lose sight of its values.
So how should the leadership reconnect with the grassroots? For a start, ordinary members should be given more of a say in how the party is run. Candidates should be chosen by members, not just anyone who turns up. The party chairman should be elected by members, not hand-picked by the leader. Activists should have more contact with senior parliamentarians, and more chances to debate and shape policy.
Members and activists are the lifeblood of any party, and the custodians of its values. “Detoxification” has seen the party lose touch with its grassroots and with the values that brought it so much success. It has seen it lose loyal voters without winning enough new ones.
As with a successful business, it is vital to get it right inside the organisation first. Only by reconnecting with its members will the leadership rediscover the clarity of vision, principles and purpose that it needs to win the next election.
Pupils are recruited to spy on us during our lessons and schools are being ‘run like totalitarian regimes’, say British teachers
“Teachers must not be assessed” is the holy gospel of teachers everywhere
Pupils are being ‘actively recruited’ by schools to spy on their teachers in the classroom, a union has warned. They are being used as ‘management tools’ to carry out covert – and even open – surveillance of members of staff, it was claimed.
Chris Keates, general secretary of the National Association of Schoolmasters Union of Women Teachers, condemned the practice as a ‘form of abuse’ of children. She told the union’s annual conference in Birmingham on Saturday that ‘debilitating’ monitoring ‘erodes teachers’ self-esteem and gnaws away at their professional confidence’.
She said: ‘Children and teachers are diminished and abused by the use of pupils as management tools to carry out surveillance on their teachers.
‘Schools are being run like totalitarian regimes where children are being actively recruited to spy and report on adults.’
Afterwards, Mrs Keates said she had been horrified to discover that secondary schools in some areas have been taking pupils out of lessons to put them through a form of ‘formalised Ofsted training’.
Pupils are trained in the methods used by real inspectors to assess whether teachers are good at their job. Ofsted is not involved in the practice, which has also been adopted by some academy chains.
The NASUWT union said that heads now have ‘breathtaking autonomy’ and are undermining teachers by forcing them to mark work on school premises until as late as 7pm.
General secretary Chris Keates said: ‘Roman Emperors were more accountable than head teachers in our schools.’
Mrs Keates revealed that some pupils are given forms to rate teachers as part of Student Voice – a movement which involves giving pupils a greater say in the running of their schools. These forms tell students to list the ‘strengths’ of members of staff.
Other schools use questionnaires, which ask pupils to consider whether they are ‘treated fairly and equally’ by teachers. They can tick boxes including ‘always’, ‘usually’, ‘occasionally’, ‘never’ and ‘not sure’ and complete ‘one star and a wish’. This involves awarding a teacher ‘one star for something they are doing well’ and ‘one wish for something you would like them to do even better’.
Mrs Keates added: ‘We’ve had practices ranging from children sitting at the back of classrooms, watching teachers with check lists, to unacceptable covert practices where children have been identified before a lesson starts by management.
‘They’ve been given a form to fill in, with no consultation with the teacher at all that the practice is going on, and in fact it’s only being discovered when the teacher asks the child why they’re not concentrating on the work in hand.’
‘Make them pay’: Pupils who make false claims against their teachers should be dealt with by police, says British union
Pupils who make malicious allegations against teachers should face criminal charges, a union said today. The NASUWT said false claims remain ‘an enduring problem’, blighting the lives and careers of accused teachers, and called for urgent action to make sure that those responsible face punishment.
The union published figures showing that 103 of its members faced criminal allegations last year.
Of these, only four resulted in court action, 39 cases are yet to be concluded and the rest (60 in total) were not taken forward.
NASUWT, or the National Association of Schoolmasters Union of Women Teachers, passed a resolution at its annual conference in Birmingham which said it believes ‘the most effective way to protect teachers from malicious allegations is to make such an allegation a criminal offence’. It called on the union’s executive to ‘take action to bring about the necessary legislative change’.
Phil Dunn, a physics teacher from Walsall, told delegates: ‘Malicious allegations eat away at the very fabric of our professional standards. ‘The NASUWT has successfully highlighted the blight on the accused teachers’ lives and their families, with often lengthy suspensions. Many teachers are simply unwilling to return to teaching following such allegations.
‘Strong clear legislation would make the consequences of such allegations plain and clear to pupils and families. ‘I will not defend any teacher who has betrayed the basic tenets of our profession. Child protection remains one of the basic foundations of our profession. ‘But, colleagues, malicious allegations threaten to undermine that very basis.’
NASUWT general secretary Chris Keates said: ‘These figures demonstrate that the issue of false, malicious and unsubstantiated allegations against teachers continues to be an enduring problem.
‘Teachers’ fear of having allegations made against them is very real, yet four out of five did not feel that current protections for teachers are adequate.
‘The coalition Government has made bold promises of handing power back to teachers, but the new powers to search and restrain pupils, which teachers did not want, will leave them even more vulnerable to allegations and litigation.
‘The fear of having an allegation made against them is compounded by the fact that, even if they are exonerated, their career will be permanently blighted by the fact that the allegation will remain on record. ‘Urgent action is needed to bring in statutory provisions to cover the recording and reporting of allegations on a teacher’s file.’
According to research commissioned by the Department for Education, nearly half of allegations made against teachers are malicious, unsubstantiated or unfounded.
The survey, which examined the number and nature of allegations of abuse referred to 116 English councils between April 1 2009 and March 31 2010 found that of 12,086 allegations referred, 2,827 (23%) were against school teachers while a further 1,709 allegations of abuse were made against non-teaching staff in schools.
A DfE spokesman said: ‘Schools should have absolutely no tolerance of malicious allegations against teachers. We’ve made crystal clear that heads can suspend or expel pupils who make false claims – and should report them to the police if they believe a criminal offence has been committed.
‘All investigations must be quick and thorough, with unfounded allegations stripped out of individual teachers’ personnel records.
‘We’ve legislated so teachers have a legal right to anonymity before they are charged with an offence, to prevent their names being dragged through the mud.’
Why don’t GPS warn you that statins can harm your memory?
This would appear to be part of a slowly-growing general awareness of the toxicity of statins. The cure may be worse than the disease if all effects are taken into account
The side effects probably show up rarely in clinical trials because of therapeutic non-compliance. People made ill by the drugs discontinue or cut down taking them but out of embarrassment don’t admit it as they know that getting into a clinical trial is a big deal
John Holliday had been on a higher 40mg dose of cholesterol pills for only a few weeks when he started to lose his concentration. ‘I’d be watching TV and suddenly find myself unable to follow the plot of a drama,’ says John, 52, a telecoms project manager who lives in Southend-on-Sea, Essex, with his wife Jill, 51, and their two children Adam, 20, and Emma, 16. ‘I’d have to read the same page of a book over and over because I couldn’t take any information in.
‘I’d always been known for my amazing memory — I was great on trivia and had total recall of events that happened 20 years ago, but suddenly I couldn’t remember things and my brain felt fuzzy.’
Just like up to seven million other people in Britain, John had been prescribed a statin to lower his blood cholesterol levels. The drugs are credited by the British Heart Foundation as contributing towards the dramatic 50 per cent fall in deaths from heart attacks in the past ten years.
But while there is consensus that statins are lifesavers for people who have previously had a heart attack, concern is growing over their debilitating side-effects. They include muscle weakness, depression, sleep disturbance, sexual dysfunction, muscle pain and damage, gastro-intestinal problems, headaches, joint pains and nausea.
Now, official bodies here and in the U.S. have ordered that the drugs must carry warnings for cognitive problems, too. Worryingly, it’s claimed GPs are failing to warn patients of the effect statins can have on the mind — meaning they may mistake them for signs of ageing or Alzheimer’s.
‘When I went back to my doctor after six weeks for a blood test, I told him how dreadful I was feeling,’ says John. ‘But he just said all drugs had side-effects and didn’t mention reducing the dose.’
Things came to a head when a friend showed John an electrical circuit he’d built for his car. ‘I’d worked with circuits since I was 16 but it made no sense,’ he says.
So John insisted on seeing his doctor again and repeated his concerns about his rapidly declining memory. This time the GP told him he could start on another type of statin when he felt well enough, and so John stopped taking the drugs immediately.
‘It took a few months, but gradually my memory returned and I’ve got my concentration back. I can’t say for sure statins caused these problems, but it seems like too much of a coincidence.’
Earlier this year, the Food and Drug Administration (FDA) in the U.S. ordered statins must carry warnings that some users have reported cognitive problems including memory loss, forgetfulness and confusion. This followed a decision by the UK’s Medicines Healthcare Regulatory Agency (MHRA) to add memory problems to the list of possible statin side-effects in late 2009.
The FDA said reports about the symptoms were from across all statin products and age groups. Those affected reported feeling fuzzy or unfocused in their thought process — though these were found to be rare and reversible. The FDA also warned, following U.S. research, that patients on statins had a small excess risk of developing Type 2 diabetes — but stressed that the benefits of taking a statin still outweigh this.
The MHRA had 2,675 reports for adverse drug reactions connected with statins between 2007 and 2011.
Officially, side-effects are rare —affecting only 1 per cent of people on the pills — but some doctors say they are under-reported. Dr Malcolm Kendrick, a GP and author of The Great Cholesterol Con, says he frequently sees patients suffering from mental confusion in his job in hospital intermediary care for the elderly. ‘Many of the patients I see will have been admitted to hospital after a fall or similar crisis,’ he says.
‘If they appear confused I’ll often advise taking them off statins to see if it has any effect — in my experience, about 10 to 15 per cent of people who appeared to have memory problems experienced an improvement in their memory symptoms after being taken off the drug. ‘I had one dramatic case where a lady was admitted to hospital on 40mg a day of simvastatin with such poor memory function her family asked me about power of attorney.
‘I suggested taking her off statins and within a week her memory had returned to normal. She went home a fit and independent 83-year-old.’
Dr Kendrick says cholesterol is the main constituent of synapses (structures that allow signals to pass between brain cells and to create new memories) and is essential for brain function.
‘It is still not proven that statins have a significant effect on mortality — it has been calculated that a man who has had a heart attack who took a statin for five years would extend his life by only 14 days.
‘Too many statins are being given to people at low risk. ‘Even in the highest risk group you need to treat 200 people a year with statins to delay just one death. ‘One day the harm these drugs are doing is going to be obvious — the benefits are being over-hyped and the risks swept under the carpet.’
While Dr Kendrick’s controversial view is in the minority, one large review of 14 studies by the London School of Hygiene and Tropical Medicine, published by the highly respected Cochrane Library last year, concluded there was ‘little evidence’ cholesterol-lowering drugs protect people who are not at risk of heart disease.
This review has been criticised by other doctors who say side-effects are rare and that there are still benefits even for people at lower risk who do not have established heart disease.
These defenders of statins include Professor Colin Baigent of the Clinical Trial Service at Oxford University, who published research in 2010 showing statins reduced deaths from all causes by 10 per cent over five years.
‘There is relatively little evidence of cognitive impairment — what evidence there is all comes from observational studies. ‘People read about side-effects and then put two and two together and blame the statins for their muscle pain or other health problems — it’s just not reliable evidence.
‘If you look at the best-quality randomised controlled trial where patients don’t know if they are taking a statin or placebo, there is no evidence of memory problems. ‘Even the FDA says the risks of cognitive problems are very small and go away when statins are discontinued. ‘We’re in danger of forgetting just how effective these drugs are.’
Dr Dermot Neely of the charity Heart UK, and lead consultant at the Lipid and Metabolic Clinic at the Royal Victoria Infirmary in Newcastle, agrees side-effects with statins are rare. ‘I’ve been dealing with patients on statins since 1987 and I can count on the fingers of one hand the number whose memory symptoms turned out to be caused by statins.’
However, he said he often saw patients who had not been told about side-effects. ‘It’s important GPs are clear about the drugs statins can interact with, such as certain antibiotics, as this can get overlooked. ‘If a patient notices an adverse effect after starting statins, they should discuss this with their GP —but not stop their drugs suddenly because this can be dangerous.’
Sonya Porter, 73, decided to stop taking statins after her memory problems became so bad that she walked away from a cashpoint leaving her money behind. ‘I was permanently fuzzy-headed and just couldn’t seem to concentrate,’ says Sonya, a retired PA from Woking, Surrey.
Then I started to get scared I might have Alzheimer’s. After reading about memory problems associated with statins, I thought it was at least a possibility. I decided to come off the pills to see if it made any difference. ‘I didn’t ask my GP, I just did it — I’d rather die of a heart attack than Alzheimer’s disease. Within a month I felt normal again and didn’t have any problems with memory. ‘I’m terrified that I could have been misdiagnosed with Alzheimer’s.’
John Holliday is also reluctant to go back on statins. ‘I wouldn’t rule it out completely — my latest test showed my cholesterol levels have gone up,’ he says. ‘But on balance, I’d rather take my chances with heart disease than feel as confused as that again. It’s all very well living slightly longer — but it’s about quality of life, too.’
Stem cell jab that repairs liver without need for transplant to be trialled on sick British children
Hopeful and at a stage where is could soon be in use
Doctors have developed a pioneering treatment for liver disease that could save hundreds of lives a year and avoid the need for transplant surgery. Liver specialists desperately need new approaches to the epidemic of liver diseases that is leading to huge demand for donor livers.
Eighteen British children suffering from rare and life threatening liver conditions are to receive infusions of specially treated liver cells removed from the organs of dead donors. Doctors believe they will make vital stem cells – the building blocks of life – and repair the damaged organ.
The worlds first trial using liver stem cells is to take place at London’s King’s College Hospital and will be headed by paediatric liver consultant Professor Anil Dhawan. He described the use of stem cells to treat liver disease as an ‘exciting breakthrough’.
He said: ‘We have many very sick children and babies who need transplants. If we can cure them without a transplant that will a fantastic development. ‘We have tried using ordinary liver cells with limited success, but is the first time a treatment has been developed that gets the liver to re-grow using stem cells.’
It comes after they successfully treated on baby Iyaad Syed last year. Iyaad was born healthy in February 2011 but his liver had started to fail after he caught the herpes-simplex virus. Professor Dhawan injected donor liver cells into the boy’s abdomen when he was just two weeks old. In November, doctors announced that Iyaad had recovered well and his own liver was functioning normally.
Liver specialist, Professor Etienne Sokal, who developed the technique at the Catholic University of Louvain in Belgium said: ‘Some patients with liver disease are unable to produce appropriate stem cells to repair the liver.
‘We have been able to show the cells we infuse into the liver last and continue to supply the liver with new stem cells, which are able to correct the missing functions of the liver in these children. ‘Our early trials in the laboratory were successful enough for us to get the go ahead to start human trials.’
If the trials in children are successful it is hoped the treatment can be extended to patients who have livers damaged by alcohol abuse, viral diseases like hepatitis or the growing numbers of patients who going into liver failure due to obesity.
At present large numbers of liver patients die each year waiting for an organ transplant – while some don’t even make the transplant list due to organ shortages. For those lucky to get an organ there is the risk of the liver rejecting putting them back on the transplant list.
The UK – along with many countries – is facing an epidemic of serious liver disease much of it due to alcohol abuse and obesity which is dramatically increasing the need for donor livers.
Latest figures show that around one fifth – or around 150 – of 700 organs transplanted each year go to recovering alcoholics.
The death toll due to liver disease has risen by a quarter in the last decade and many of the victims are only middle-aged. Just over 11,500 men and women now die of liver disease every year -up from 9,200 in 2001.
It is estimated that just under 80 per cent of these deaths are caused by alcohol, and obesity and the remaining 20 per cent by hepatitis and inherited conditions.
A culture of overeating is also putting the lives of more than 500,000 obese young people at risk of serious liver disease according to a recent report by the Department of Health.
While alcohol is a major contributor to liver damage, many people are unaware of non-alcoholic fatty liver disease, which is linked to being overweight. It can progresses to a life-threatening condition called cirrhosis of the liver and is now almost prevalent as alcohol abuse as a cause of liver disease.
The new treatment developed by Professor Sokal offers the hope of an alternative to liver transplants for the growing numbers of people who face death due to liver failure. The stem cells are better tolerated than a organ transplant and require less immuno- suppression drugs- reducing risks of rejection.
From a small number of cells gathered from one liver, experts have been able to grow millions of special liver cells capable of making stem cells when infused into a patient’s liver.
Trying to treat liver disease by infusing donor liver cells is not new. But until now only adult liver cells have been used – with limited success as the cells die off after a period of time.
By using specially treated liver cells that are capable of becoming stem cells, scientists believe they may have found a permanent cure for patients who would normally need a transplant.
Doctors will trial the stem cell treatment on children with an inherited metabolic disorder that affect the liver called Crigler-Najjar syndrome. Children with this condition are unable to eliminate toxins from their bodies and therefore must undergo daily 12-hour exposure to special blue lights, just to survive. Without daily treatments, a child would suffer brain damage, muscle and nerve damage and death.
The treatment will also be tried on children with urea cycle disorders who are unable to process liver toxins because of a genetic defect. This condition can lead to brain damage and death without a special diet. Experts believe that up to 20 per cent of cot deaths may be due to undiagnosed urea cycle disorders.
Professor Dhawan, said: ‘If all goes well the children we are treating with the cells will show an improvement within a couple of months. We would expect those children to come off their medicines and therapy. It will mean the liver cells have done their job and corrected the defects that made them ill.
‘Then we will have to see how long the effect lasts and whether we have to top up these children with further infusions. I am optimistic the treatment will work.’
Professor Max Malago, a liver transplant surgeon at London’s Royal Free Hospital, said: ‘There is enormous demand for donor livers at present which is impossible to meet. There patients who are desperate to transplant but unfortunately not everyone can get an organ. ‘If there was an alternative treatment to transplant where you could save the liver it would offer hope to patients who are at present dying waiting for an organ.’