Autism and the cost of care
For all US healthcare’s faults, it outperforms the NHS on autism provision
John Oliver, the British-born American TV comedian, recently ran a segment for his HBO show on the healthcare proposals of the Democratic presidential candidates. He highlighted the plights of the 27 million Americans without health insurance, and 44 million underinsured who pay large amounts in premiums, deductibles, and ‘co-payments’ for prescriptions and services. He also said the following, and it is worth quoting him in full:
“I shit on Britain a lot on this show, and I’m not going to stop anytime soon. But one thing Britain does well is the National Health Service. It’s not perfect, of course. I’m not going to swing dance on a fucking bed about it [he said, in reference to the Olympic opening ceremony]. But I’ll be honest with you, I’ve never had a bad experience, and I don’t know anyone who has. But since moving to America, I don’t think I’ve met anyone who doesn’t have at least one insurance industry horror story.”
Speaking personally, I have concerns with my US health insurance, but the care my family now receives is excellent. I know many more people who have NHS horror stories and all relate to care, not cost.
John Oliver is 42 years old, has lived in the USA for around fifteen years, and is married to an American former army medic. They have two children born in the USA, and at the end of a powerful and important piece on vaccinations – which aired on the same show in 2017 – Oliver discussed how his son was born prematurely. My own children were both born before term and both received excellent medical care. Both were able to leave hospital after a few days. They were born in the USA, and after insurance co-pays and deductibles, each birth cost me personally around $8,500. My youngest nephew was born in the UK at only 33 weeks and received amazing care from the NHS. He survived and flourished and his treatment was entirely free.
However, for every success story, there are others that are less edifying. The same sister spent the night after the birth of her first child lying on a trolley in the corridor of her local hospital, separated from her tiny daughter for no reason other than oversight. Consequently, she decided to have her second child at home. The NHS midwife arrived just in time, but without gas and air. These stories now seem trivial in comparison to her son’s survival, but at the time they were very real to my sister. She would happily have paid $8,500 to avoid either experience. She is not alone.
Were I to meet John Oliver, he would be the only British person I know over the age of forty who does not have at least one NHS horror story. I would tell him the story of a friend whose father was admitted to hospital with a broken hip and died having contracted a superbug.
I would move on to the story of a friend who waited three months for a GI consultation, before ‘going private’, and seeing the same doctor for whom she had waited that long within a week, visiting him after hours at a non-NHS facility.
Then there is my own experience seeking care for an autistic child in a system that prioritises necessary public health considerations. Try persuading an NHS GP to prescribe antibiotics or administer the chicken pox vaccine when it is against his practice’s policy.
For all parents, curing their child’s illness quickly and with the least pain and suffering is a greater priority than long-term public health outcomes. But most accept the arguments for restricting the use of antibiotics, and some are even persuaded that it is better for a child to contract chicken pox than receive a shot. For parents of an autistic child, who cannot be persuaded not to poke at an infected ear canal or to pick off every scab, antibiotics and vaccinations are essential and therefore frequently in the UK they must be purchased privately.
When my daughter was two, I employed an online MCHAT (‘Modified Checklist for Autism in Toddlers’) screener to investigate why this otherwise bright toddler did not speak simple words or even babble, did not respond to her name, or take an interest in toys or her own brother. I took the completed MCHAT to my NHS GP, who suggested he had never encountered one before.
In response to my concerns, and to the sight of my child running in circles and spinning, he suggested there was little he could do. “I can ask for a referral, but 99% of the time it is refused,” he dead-panned. “Perhaps we can just wait until school starts and the teachers notice something? That’s usually how it works.”
In response to the sight of my child running in circles and spinning, he suggested there was little he could do.
I took my daughter to the Portland Hospital in London for a private consultation. This was carried out by an NHS doctor working on a Saturday and it cost £600. The initial assessment obliged me to investigate obtaining a full diagnosis, which was done in the USA several months later. Although I was uninsured, that proved less expensive and more thorough than the service offered at the Portland. Still, it cost several thousand dollars to confirm my worst fears.
Two years later, having struggled to obtain non-existent occupational therapy and hopelessly inadequate speech and language support in the UK, we moved back to the USA, where medical care and therapy are costly for the under-insured, and where new immigrants are denied access to public funds.
But as a consequence of the money that flows through the system, speech and language pathologists and occupational therapists exist in abundance, many specialising in early intervention therapies. There are paediatric neurologists with expertise to diagnose children early enough for therapies to have more profound effects. My daughter is making great progress, although there is a long way still to go. The care she receives is expensive but effective. No doctor here would ever suggest I wait for a teacher to notice if she behaves differently to others.
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