Medicine, aided by the State, is waging war on parents who are discovering better treatments for their children. In the past few months, the dramas of Ashya King and Neon Roberts have grabbed the headlines, but a more recent case-that of Mary Kidson and her 16-year-old daughter-clearly exposes the limitations of medicine and what doctors are allowed to offer. Ms Kidson was treating her daughter's chronic fatigue syndrome with hormones-prescribed by a pioneering doctor in Belgium-when she was arrested under archaic UK poisons legislation and had to face charges at her local magistrates' court. She has not been allowed to see her daughter, who suffered a breakdown after her mother's arrest and has been detained in hospital under the Mental Health Act.
Although cleared of all charges at the end of October, Ms Kidson is determined to continue fighting for a more open National Health Service (NHS) that offers safer alternatives, or at least allows parents to seek them out for their children. Medicine has little to offer the chronic fatigue sufferer. The NHS Choices website suggests that using the 'talking therapies', such as cognitive behavioural therapy (CBT), and pacing your day so that you don't get over-tired, may help manage the problem, but adds that there is "little evidence" that any alternative therapies, or even nutritional supplements like vitamins B12 and C, will work. Faced with no other option, Ms Kidson, a 55-year-old special-needs teacher, looked for alternatives outside the NHS, and discovered the work of Dr Thierry Hertoghe, a fully qualified doctor based in Belgium. Dr Hertoghe is a world-renowned expert on hormone therapy and believed he could help Ms Kidson's daughter. He prescribed three hormones-thyroid extract, oestrogen and hydrocortisone-and her condition started to improve over the following five months.
Despite the improvements, Ms Kidson's estranged husband reported her to the local police in Hereford. The police came to her home with social services officials in March last year, arrested her
on poisoning charges under the 1861 Offences Against the Person Act and took away her daughter. She has been separated from her daughter since then and is allowed only one short supervised visit once a fortnight. Her daughter eventually broke down under the strain and is now being detained in hospital under the Mental Health Act. Ms Kidson was imprisoned last April after her daughter tried to contact her, so breaking the terms of her bail; she was then remanded into custody at Eastwood Park women's prison in Gloucestershire. Since being found innocent by the
local magistrates, Ms Kidson has told The Independent newspaper: "This whole case raises the question of a parent's right to go and find treatment outside the NHS for their child. It seems the NHS has a monopoly on children's medical treatment".
Dr Hertoghe, who gave evidence at the trial, agrees. He said the trial should never have taken place and urged the NHS to allow parents greater freedom in determining the best care for their child. "I don't think the NHS doctors who gave evidence against me are untypical of other doctors in the NHS in their way of thinking; the whole system needs reform."
The Ashya King case Ms Kidson's case has echoes of the recent Ashya King case, the five-year-old boy whose parents took him abroad to get safer treatment for his medulloblastoma,
a highly malignant type of brain tumour. They wanted him to receive proton radiotherapy instead of the standard radiotherapy and chemotherapy the Southampton General Hospital was
offering. Ashya had the tumour removed last July, and courses of chemo-/radiotherapy are recommended as a follow-up within six weeks of surgery to reduce the chances of the tumour returning.
But Ashya's parents, Brett and Naghmeh King, had done their own research and believed that proton radiotherapy-or proton beam therapy-was more targeted and caused less damage to surrounding brain cells. According to a statement issued by the hospital, doctors had told Ashya's parents there was no difference in survival rates between the two forms of radiotherapy.
Mr and Mrs King told Daily Mail journalists that a radiologist at the hospital admitted that the only criterion doctors worried about was survival rates, and the quality of life afterwards
wasn't even a consideration. "With radiotherapy, your son will get secondary tumours, have hearing problems, growth problems and special needs for the rest of his life," the radiologist was reported to have told them. 2 However, after Mr King persisted with his requests for proton therapy, he said that a doctor told him: "If you continue with these questions, your rights to make
decisions about Ashya will be taken away from you. We will apply to the family court to have your parental rights removed and then we will give him any treatment we want."
As with Ms Kidson, Ashya's parents felt they had few options open to them, so they took Ashya out of hospital without the knowledge or consent of the doctors, packed the special food he needed and made their way to Spain, where they planned to sell their holiday home to raise the funds for the proton radiotherapy, which was to be administered in a clinic in Prague.
Southampton Hospital contacted the police and a European arrest warrant was issued. Within two days, the couple were arrested by Spanish police-and separated from Ashya- and imprisoned in one of Spain's most notorious prisons. The couple spent three nights in prison before they were reunited with their child. The arrest warrant was withdrawn following a massive public outcry,
and the Kings were allowed to go to Prague to let Ashya get the proton radiotherapy, which the NHS has funded but does not currently supply. At the time of writing, Ashya has finished the 30 courses of proton therapy and is out of intensive care. A spokeswoman at the Proton Therapy Center in Prague says that Ashya is already putting on weight, smiling and reacting to gestures.
The Neon Roberts case Sally Roberts wasn't so lucky. As with Ashya, her son Neon, who was seven at the time, had a brain tumour, which was successfully removed in October of last year, and the doctors wanted to start a course of chemo-radiotherapy to lower the chances of it returning. Unhelpfully, a doctor told Sally that the radiotherapy would "fry Neon's brain".
Frightened by the damage that might be done to Neon, Sally ran away with him. A judge allowed the release of photographs of Sally and Neon, and they were caught within four days.
In the High Court-where Sally's rights as a parent were eventually taken away from her-she put forward evidence about alternatives to the chemotherapy and 30 courses
of radiotherapy the doctors said Neon would need. She told the court: "I fear they are frying my son's brain when there are other ways we could proceed. I feel it is very unnecessary and I'm sure any mother who had researched it as I have would feel the same." Sally was vilified in the press, but since completing the course of radiotherapy, friends close to her say that Neon is listless and showing signs of developmental problems. However, part of the court order prevents Sally from talking too openly about Neon and his response to the treatment.
Doctors can offer only what they've been taught and what is allowed by the General Medical Council. Unfortunately, that often falls short, as parents are demonstrating on a regular basis.
Instead of parents being hounded and prosecuted, perhaps it's time for the NHS to listen and consider alternatives that may work. As Dr Hertoghe said at the close of Ms Kidson's trial: "We have to give people the right to choose their doctor without fear of prosecution. Doctors are not gods. The NHS is decades behind its time and its doctors are too traditional."
When a child can decide
Any child in England aged 16 or under can decide on his or her own medical treatment "if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed". This right-known as 'Gillick competency'-is determined in the first instance by a doctor, who can also consult with other doctors before deciding. But it's something the courts
have been loath to define. It's also been weakened by subsequent rulings, so doctors faced with a competent child who refuses treatment would need to resort to the courts. The Gillick competency ruling was made by Lord Scarman in 1985 in response to Mrs Victoria Gillick's campaign against her daughter, who was under the age of 16 at the time, being prescribed
contraceptives. Although common practice allowed doctors to prescribe contraceptives to minors without parental consent, Mrs Gillick argued that it was illegal as it was encouraging sex involving a minor.
What are the rights of parents?
When it comes to medical care, the rights of parents are surprisingly limited-and they become almost non- existent if they disagree with the treatment proposed by a doctor. Parents have the right to "consent to treatment on behalf of their children, provided the treatment is in the interests of the child". The second half of that statement takes us into a vicious circle, because what a
doctor proposes is invariably seen as being in the best interests of the child, so any parent who disagrees doesn't have the best interests of their child in mind. The British Medical Association, the trade union for doctors in the UK, tells its members that the courts invariably side with the doctor and will go against the wishes of the parents "where there is a good chance of it [serious
treatment] succeeding or providing significant benefit to the child". The hands of the courts appear to be strengthened by human rights legislation-which reinforces the welfare of the child-but it's a double- edged sword, as Article 3 of the Human Rights Act 1998 also states that we all have the right not to be subjected to inhuman or degrading treatment.
A doctor requires the consent of only one person before beginning treatment. It can be one parent-and it's often one who has divorced and left the marital home-or even the child him-/herself,
provided the child has 'Gillick competency' (see box, above). Religious convictions don't hold much sway either. A doctor can refuse to carry out male circumcision if required purely on religious grounds, for instance, and a Jehovah's Witness parent who refuses a blood transfusion for their child is almost always overruled.
1 Gallagher P. The Independent, 30 October 2014; www.independent. co.uk/news/uk/crime/mother-cleared-of-poisoning-teenager-daughter-with-hormones-supplied-by-belgian-doctor-9829226.html
2 Hardy R. Mail Online, 29 September 2014; www.dailymail.co.uk/news/ article-2772994/They-locked-left-Ashya-frightened-crying-like-wounded-animal-Starting-today-parents-jailed-trying-save-little-boy-s-life-tell-story-It-enrage-you.html