Life-changing surgery for girl, two, who was denied NHS treatment for birthmark that threatened to leave her blind
The care and expertise afforded the Knight family today are the best the NHS can offer. Zosia is having a large birthmark — one that snakes around her eye, and covers some of the lid — removed.
The nurses are reassuring and the consultant patiently explains exactly what to expect. Even Zosia’s Mickey Mouse toy gets a bandage. The hospital cleaner takes time for a kind word. It all makes you proud to be British. Except for one rather crucial fact.
This vital, life-changing and potentially sight-saving operation is not being paid for by the NHS. Funding for it was provided by the Daily Mail. We stepped in when we discovered that — despite the fact that almost every other NHS trust in the country offers the procedure routinely — West Sussex NHS Trust was refusing to help Zosia.
Every healthcare professional involved was aghast to discover that a little girl like Zosia — her name means ‘wisdom’ — came further down the pecking order than those needing gastric bands or boob jobs.
‘It’s despicable,’ says Carole. ‘This is the NHS trust that paid for someone I know to have a gastric band. Can someone tell me why that is more necessary than a treatment that can give my daughter some hope of a normal life? ‘Worse, I know a woman who had a breast augmentation paid for by West Sussex NHS Trust. She said the size of her breasts made her self-conscious and stopped her socialising. It is sheer lunacy to say that she needs treatment more than my daughter.
‘I just don’t understand how these people can sit round a table and make these sorts of decisions. ‘They have overruled three consultants who say Zosia needs this. How dare they, when they haven’t even met her.’
An hour watching Zosia play in the pre-surgery waiting room is more than enough to confirm that she is a bright and observant little girl. Perhaps too observant for her mother’s liking. She started to notice the pinky-purple birthmark on her face as soon as she could talk, and asked what it was.
At first, she was satisfied with her mother’s explanation that it was a ‘special mark’, something to be proud of. Then, as the birthmark spread and darkened, other children started to point, and ask questions.
‘It got really awful during the last big snows,’ Carole explains. ‘Zosia’s birthmark changes colour depending on the temperature. If she is warm, it is quite light. When she’s cold, and her blood rushes to the surface of her skin, the birthmark goes a really dark purple. It looks terrible. ‘When she was out playing in the snow, other kids would come up to her and say: “Uuuughhh, what’s that on your face”.
Experts in the field advise starting treatment as early as possible, so that by the time the child begins school — where teasing and bullying is going to be harder to avoid — optimum fading will have been achieved.
Carole, herself a paediatric nurse, was well aware of this, so sought medical advice in May last year. Her consultant confirmed that Zosia would be an ideal candidate. Indeed, in her case, the removal procedure would be essential because her birthmark snakes round the eye and actually covers some of the eyelid.
Over time, port-wine stains grow with the child and can become raised and bumpy. In some cases, the eye can be affected, and blindness can be a risk. If she did not have treatment, Zosia’s eyesight would have to be monitored more carefully than most.
But to the surprise, and horror, of every healthcare professional involved, the Knight’s local NHS Trust, West Sussex, refused to fund the £15,000 treatment. The family, who live in Maidenblower, Crawley, discovered too late that they came under the jurisdiction of one of only two healthcare trusts in the country which do not routinely offer laser treatment for children with facial birthmarks.
Their doctors appealed, but their appeal was rejected. The family’s local MP, appalled by the decision, intervened, but again was overruled.
Zosia’s story was highlighted last month in the Daily Mail, and our readers were so outraged that such a young child could become a victim of an unfair postcode lottery that this paper offered to pay for the treatment, which is why we are here with Carole and Zosia today, at the Queen Mary Hospital for Children in Carshalton.
The past few weeks have been emotional. On the day we phoned to tell Carole that the bill for Zosia’s treatment would be met, albeit not by the body that should be assuming responsibility, she burst into tears. ‘We’d been worried sick about what was going to happen. We’d already made the appointment with the bank about remortgaging the house,’ she reveals.
‘The worry was stomach-churning. My husband Craig is a police officer. I’m a nurse. We have two other children. We just don’t have a spare £15,000 lying round. ‘We’d thought about moving — were we in the next county over, there would not be an issue about funding — but this is not the best climate to be thinking about that.
‘I’d barely slept since it had all happened. Every night I’d lie awake thinking of what to do for the best, and every morning I’d get up and look at Zosia’s little face, and want to cry.’
She’s been floored by the support offered by complete strangers. Today, Zosia carries a Mickey Mouse sent in the post. In her bag, Carole also has an envelope, which arrived at her home with no address, only her home town. It contains £30.
Zosia is not the only child being treated today, which brings home how unfair her situation is. Consultant dermatologist Dr Chris Harland is well used to carrying out similar procedures on children Zosia’s age and younger. Her case is unusual only in that it is not the NHS that is footing the bill — a first, in his experience.
‘When you have a port-wine stain on the face of a child, you expect funding,’ he says, simply, unwilling to directly criticise the trust involved, but also clearly baffled as to why Zosia should be denied what every other child who passes through his clinic has received.
Zosia is thankfully oblivious to the storm her case has caused. Even as she heads to theatre, her MP, Henry Smith, is refusing to let the matter go, and her parents are taking legal advice on whether their Health Trust can be taken to court.
‘The official wording was that they “considered it a cosmetic procedure”. I couldn’t believe that. How is the risk of her sight being affected cosmetic? And there is nothing cosmetic about a child’s life being blighted because she is afraid to show her face.
‘Believe me, I know what I am talking about. In my job, I have dealt with children who have facial disfigurement, and some of them have never come to terms with it. I’ve dealt with teenagers who have tried to commit suicide because of the way they look. ‘Sometimes, it isn’t possible to change that through surgery. But when it is ….. my God, how can they not see this?’
Two separate appeals have now been turned down by the Trust, which does not appear willing to compromise. ‘A businessman in Crawley offered to pay for half the treatment if the Trust met the cost of the other half. They turned him down,’ says Carole. ‘I find that despicable.’
The laser treatment is actually quite straightforward. Dr Harland uses the pulsed dye laser — the industry standard for the treatment of port-wine stain in children — which applies intense bursts of light that selectively destroy the blood vessels making up the birthmark. A cooling liquid is sprayed immediately before each laser pulse, to reduce side-effects.
Half an hour later, Zosia is back on the recovery ward. Dark purple bruising is immediately obvious. Over the next few days, this will darken yet more before fading. In six to eight weeks, doctors will be able to tell how well she is responding to treatment, and how many sessions will be needed.
Ultimately, though, what convinced the Knights to fight, and what would have led them to take out that second mortgage, was the thought that one day Zosia would hold them to account. ‘Say she was bullied. Say she withdrew into herself. Say her whole life was ruined because we’d chucked in the towel when those faceless bureaucrats said “No”. ‘They might have been to blame, but we would never have been able to forgive ourselves either.
‘Thanks to the Daily Mail we’ll now be able to sleep at night. How the bureaucrats can is beyond me.’
Rudyard Kipling… doesn’t he make cakes? How a third of British children have an exceedingly poor knowledge of literature
More than a third of children think Rudyard Kipling makes cakes, according to damning research. The study, carried out among eight to 12-year-olds, also found that one in five thinks Phileas Fogg, the principal character in the 1873 Jules Verne novel Around the World In Eighty Days, is just the name of a snack brand.
The poll of 217 children nationwide found just 15 per cent had heard of Arthur Conan Doyle, 17 per cent knew J.M. Barrie, 19 per cent Robert Louis Stevenson and 31 per cent Lewis Carroll.
Ignorance about Kipling – the novelist and poet behind the Jungle Book, Kim and stories of imperial India – and other books, confirms fears that many children don’t count reading as their leisure activity of choice. If a new book came out, 31 per cent would read the book, but 69 per cent would prefer to see the film.
And when asked what their favoured after-school activities are, 78 per cent chose TV and 69 per cent went for games consoles. Fewer than a third of boys – 31 per cent – were likely to read a book for pleasure.
The implications of a lack of enthusiasm for reading could be devastating. A study by the OECD suggested that the UK had plummeted down international tables measuring reading, maths and science ability.
And a recent report by ChildWise found that children in Britain sit in front of a TV or computer screen for four-and-a-half hours a day. It found that children now spend an average of one hour and 50 minutes online and two hours 40 minutes in front of the television every day.
The reading research was carried out to support an initiative to print extracts from children’s books and poems on breakfast cereal boxes. The Roald Dahl Foundation has signed up to it, along with Puffin books and Asda, which commissioned the study of children’s reading.
Extracts from four of Roald Dahl’s children’s books, combined with interesting facts about the author and details of a creativity competition for youngsters will appear on Asda shelves nationally from today.
Francesca Dow, managing director of Penguin Children’s Books, said: ‘We’re delighted to be supporting this imaginative campaign to inspire kids to read and fire their imaginations.
‘We’ve selected the extracts very carefully and we’re hopeful that by doing so many thousands more children will soon be hooked on books. Roald Dahl is the world’s favourite children’s author and the perfect choice to launch this important campaign.’
Children’s author Tamsyn Murray said: ‘There are far more tugs on kids’ time today than ever before and that means that we need to find new ways of getting kids hooked on reading and awakening their imaginations.’
British bureaucratic madness
Operation overkill: 25 firemen and five engines sent to rescue one cat stranded on roof
It’s a service traditionally offered by our compassionate fire services. But the response of the Suffolk brigade to a cat trapped on a roof went well beyond the call of duty.
Health and safety rules meant 25 firefighters were sent to rescue the cat at an estimated cost of £1,500.
The cat was perched about 40ft up on a two-storey house in Leiston, Suffolk, yesterday when five crews were dispatched to save it. The crews – two of which came from 30 miles away – scrambled to comply with national ‘working at height’ regulations to ensure the health and safety of firefighters, but union leaders have branded the response ‘crazy and overkill’.
Suffolk Fire Service sent a turntable ladder from Bury St Edmunds with a two-strong crew, escorted by a support crew from the same station. They sped off on the 60-mile round trip to Leiston at 9.45am.
Firefighters with specialist training in working at heights ‘each likely to be four or five strong’ were also mobilised from Felixstowe, 30 miles away, and Bungay, 20 miles away.
Ironically the crews were turned back within minutes when a local firefighter from Leiston climbed a ladder and rescued the cat – which ran off unscathed. Under the guidelines firefighters are allowed to work temporarily from the top of a ladder.
Suffolk Fire Service recently adopted national regulations drawn up in 2005 to ensure the safety of people working at height, according to the Fire Brigades’ Union. The response would have cost taxpayers thousands of pounds.
A spokesman for campaign group The Taxpayers’ Alliance said: ‘It’s ridiculous that five fire crews were sent out to rescue one cat. ‘It’s almost laughable but wasting resources is bad news for taxpayers and others who might have needed to be rescued, so it’s not funny.’ He added: ‘Of course we want firemen to be safe, but health and safety and red tape has resulted in an excessive and costly response.’
The crews from Leiston and Bungay are on-call, or retained, while the other stations involved have day-only cover.
Andy Vingoe, Suffolk branch chairman of the FBU, said: ‘Health and safety says that if we go up on to a roof, it brings into play our working at height procedures and safety system.
‘If a cat is stuck on a roof there is a chance the owner could get distressed and try to rescue it themselves and we would end up having to rescue them as well.’ He stressed: ‘It is crazy and it’s overkill and if we are having to send five teams to an incident like that, what happens if there is a serious incident elsewhere? ‘It strengthens our case that we need more people to make sure we have enough cover to cope with the demands of the service.’
A Suffolk County Council spokeswoman said it had been called by the RSPCA to help and the reaction was in line with national regulations. She said: ‘Due to the nature of the incident, fire crews with the specialist training and equipment were called to attend, in addition to the local crew. ‘The incident was quickly dealt with by the local crew so the specialist teams were stood down and did not attend.’
Neighbour Teresa Saunders, 49, alerted the fire service after hearing the cat crying. She said: ‘The firefighters deserve a lot of praise. They were very quick and dealt with it incredibly well. ‘I don’t know whose it was – it had a blue collar and was a tortoise shell tabby.’ She added: ‘It was perfectly fine as far as I could tell. It ran off as soon as it got down.’
English are now head and shoulders above Scots as growing wealth in the south adds inches to average height
Inadequate nutrition does limit height but it is difficult to imagine that Scots get inadequate nutrition these days. Over-nutrition, more likely. Scots have always moved South to better themselves and taller people probably felt more confident in doing that
If a Scotsman moans that other people belittle him, he might well have a point. For research has shown that the tallest Britons now live south of the border. Scots are, by and large, the shortest people in the UK, with the typical man averaging 5ft 8in. This compares to 5ft 9in for Londoners.
What might add to the Scots’ frustration is that it hasn’t always been this way. In fact, 200 years ago it was a completely different story, with the Scots towering over their English cousins.
Researchers say the reversal cannot be explained by the penchant north of the border for delicacies such as deep-fried Mars Bars.
Instead, they believe it is down to economics, with the pace of the improvement in living standards, nutrition and medicine in England – and particularly in the South – outstripping the change in Scotland.
Professor Bernard Harris, of Southampton University, said: ‘If you drew a map of people living in the early 19th century, then what you would find is the further north you went, the taller on average the population. Now, it would be the other way round. ‘The point is not that the Scots have shrunk, it is that living standards in the South of England have improved more dramatically over the past 200 years than those in Scotland.’
His research shows that two centuries ago the average Scot was an inch taller than those living in southern England, while Norwegians were among the shortest nationals in Europe. Today, the Norwegians are the second tallest nation in Europe, surpassed only by the Dutch, who average around 6ft.
But nationality is not the only thing that affects height, with wealth also adding inches. In his new book, The Changing Body, the professor revealed that there were dramatic differences between the heights of rich and poor classes in 18th and 19th century Europe. In the 1780s, the average height of a 14-year-old working-class child was 4ft 3in, while an upper-class child was 5ft 1in.
Professor Harris said: ‘Today, however, as health services, nutrition, sanitation and education have become universal, upper-class children have continued to grow taller, but at a slower rate than working-class children. ‘The difference between the upper and working-class adults has narrowed to less than 2.5in.’
Professor Harris trawled records from prisons, schools and the military to reveal the link between height and living standards.
Documents included in his research range from the details of soldiers who fought in the American civil war, to the vital statistics of convicts transported to Australia and measurements taken in British schools.