Does the State reserve the right to have ultimate say over decisions about the medical treatment of children, if its views depart from those of the child’s parents?
This issue has been raised again with the handling of the King family, where Mr and Mrs King were temporarily imprisoned in Spain after leaving the UK because they disagreed with the treatment that a Southampton hospital insisted upon for their child Aysha’s brain cancer.
As ultimately came to light, the family were not neglectful or putting their child in danger, as the hospital (and the media) initially concluded. The Kings had carefully researched the situation and decided to forego Southampton’s proposed treatment of aggressive radiotherapy, in favor of proton beam treatment, which is less likely to have a blunderbuss effect on the healthy cells of the brain.
The King case brings to light the problem of making the views of one group of medical professionals the ultimate authority over medical decisions of minors. A few years ago, I wrote about a family I called the "Smiths”. In that case, Social Services took the issue of newborn Alex’s slight underweight (a trait shared by many on the baby's maternal side of the family) and proceeded to build an entire case of parental "failure to attend to the baby's medical needs" around what were well informed decisions about alternative health care.
The Smiths ‘neglect’ was their refusal to give their newborn injected vitamin K, the Guthrie (heel prick) test or vaccinations. This refusal to conform to the views of the 'professionals' resulted in an interim care order and the Smiths being placed in a family centre for 24 hour surveillance for about four months. The long hooks of Social Services were firmly sunk in.
The Smiths were then let out of the family center, but ordered to live with Joe Smith's parents. This caused no end of friction between the couple. Joe's parents smoked in front of the baby, against Lisa's wishes. His mother was critical of everything Lisa does and has firmly sided with Social Services in blaming the baby's underweight on her daughter in law, even though Lisa sought the advice of three health professionals.
Disabled from a botched knee operation, Lisa was forced to live in a house with stairs that she had to continually negotiate just to go to the loo.
Relations between Lisa and Joe, which had been "extremely" happy for 12 years, became strained to the point where the word divorce crept into the conversation.
The Smiths were convinced they could save their relationship if they were able to proceed with plans to move to their own home. They put in an offer on a three bedroom house in Wales; Joe, a former bricklayer who studied to be a financial advisor, wanted to go and seek permanent work there and get off state benefits. Lisa's extended and supportive family live there and were happy to assist with the rearing of the baby.
Social Services, however, decided that Joe shouldn’t work because Lisa is disabled, even though she explained that she was perfectly able to get around on her "one and a half legs", particularly in the new house which had facilities all on one floor.
Their future completely hung in the balance for months, while the Smiths waited for psychological and paediatric assessments, to whether they were fit to keep the baby and move to Wales or whether Social Services could retain joint control over Alex until he was school age.
Make no mistake: this case wasn’t about the health of Alex who, by six months, was a bruiser between the 75th and 91st percentile in height and weight.
As with Aysha King, the case was about professionals asserting arbitrary control over an entrenched position. The problem here was simply that Lisa wasn’t willing to blindly listen to her doctors.
Lisa had good reason to be wary of medical professionals. She's disabled because of a number of botched knee operations. She had an appendix operation that turned septic and has had numerous other incidents in hospital. She knows health professionals are not infallible and she doesn't mind saying so.
The problem is that Lisa is a bit like Randle P. McMurphy, the Jack Nicholson character in One Flew Over the Cuckoo's Nest. She got a bit prickly with mindless authority; indeed, her major sin, she was told, is that she doesn't listen to professionals. That attitude even led to accusations of Munchausen's syndrome by proxy.
Ultimately, the Smiths prevailed, but only after they had to hire a lawyer and take their case to court. Ultimately it took the law to fight the medical profession to enable a couple to get out from under the clutches of the Nurse Ratcheds of Nottingham and make some well reasoned decisions for their child.