Tuesday, November 16, 2010

Kids With Special Needs Around The World: England

Stacie is mom to May, an 18-month-old with cerebral palsy and the focus of Stacie's inspiring blog Mama Lewis (and the amazing adventures of the half-brained baby). "We were told she might never eat or hold her head up, let alone enjoy a vigorous bounce," Stacie says. "She continues to defy all these original predictions." Originally from Detroit, Stacie moved to England 11 years ago to be with her husband, who's Welsh. They're both teachers. I hope you find this fourth installment in the Kids With Special Needs Around The World series as interesting as I did. Warning: You may be stricken with a sudden urge to move to England.

Last summer, while visiting my family in Michigan, my daughter was admitted for an overnight observation at a children’s hospital. We shared a room with a grandmother and her very ill four-year-old grandson, separated by a thin blue curtain and a wealth of insurance.

The following morning, after the doctor’s rounds, the two of them disappeared. I returned to the room after making a call on my cell phone to find their side vacant.

“Where did they go?” I asked my husband.

“Their insurance ran out,” he said, forlornly.

My jaw dropped. I had forgotten this terrible fact about the Land of the Free.

For the past 12 years, I have lived in Britain, the land of socialized medicine. Last year, when my daughter was born with brain damage, we never consulted our insurance to see what they would and would not pay for. Here, there is no insurance, everything from vacinnations to an MRI brain scan is covered by the National Health Service (NHS).

Besides, what was there to question? My daughter needed 24-hour care for as long as it took. She needed specialised equipment and machines to monitor her and help her breath and eat. If she needed a test, she got it. If the doctors wanted to retest, the only okay we needed was from the receptionist booking the appointments.

The generosity of services followed us home. Her specialised chair to eat and play in (cost: almost £2,000/$3,600) was paid for by the government, along with a duplicate that resides in her nursery. She also receives one-on-one care at her nursery that is paid for by the government. Everything, from her therapies (and she has a physio, OT, dietician and visual therapist) to her medicines (and she is on four different ones) is covered.

Not subsidised. The policy of health care in Britain is that it is free on the point of delivery.

When I explain to my British friends, all of whom also pay a percentage of their income towards the NHS, that in the States you pay insurance every month and then when you go to the doctors or have an x-ray or are admitted to the hospital, you pay in addition to that, they look at me like I am crazy.

Concerns that we sacrifice standards for all this “free” stuff are unfounded. A 2010 report by the Commonwealth Fund comparing Britain’s health care system to seven other countries including America, placed us second and the U.S. last. The U.S. spends over twice as much per person as we do, and yet they came last or sixth in every category including access, quality of care and efficiency. In contrast, we came sixth in only one category, Long, Healthy Lives. In the same category, the U.S. again came last.

Sure, there are some aspects of health care here that annoy me. I can’t make an appointment to see a specialist – I always have to see a general physician or May’s neurologist first and convince them to write a referral. Once made, referrals always go missing. Always. That is very frustrating to an American. Weeks or months can pass before we receive what could have taken days.

Also, I wonder: Would it be as hard to get May into a nursery in America? In the States, disabled children attend “normal” school. Here they are encouraged not to. That is an entirely different attitude I don’t think I’ll ever understand.

Despite all this, I am grateful that my daughter lives in a country that is more concerned about her health than profit.

Before May, I preferred to live in Britain, but now, I feel I have no choice. I worry that the major cuts the British government announced the other week will restrict May’s access to everything she needs. But there will never be a time when May is refused treatment or sent home early from the hospital when she is still unwell.


  1. I'm from Lancashire and agree completely that we are incredibly lucky to have the NHS. We never worry about whether we can afford to attend to our son's health needs. Specialists work marvels with our family and we don't give them a penny.

    The down side is the wait for physio, ot, etc - because the kids who need it more get it first and we are lower on the list! We really can't complain though.

    Your daughter is beautiful - such lovely dimples!!! Xxx

  2. We've been on this roller coaster world of special needs now for only 19mth. I to agree that we're very lucky to have the NHS. All of Tom's needs are met my only down side is the waiting for surgery we've been waiting ages now for a Peg for Tom and it keeps being put off.This last 19mths has taught me so much and just opened my eyes to this world I never knew existed and just how many kids and families there are out there riding this coaster ;0) xx Nicky xx

  3. Health care in Britian is not free...the citizens pay for it.

  4. Even if you have to wait it's not THAT bad. I had to wait over a year for things and then had to wait and see if insurance would cover it, which they usually don't.

  5. Yeah, you were right. I want to move to the UK. We actually had the opportunity to move to England, but passed it up because my husband's employer would not help pay for us to relocate. At times I regret that choice. I fear the USA will never have socialized medicine. God forbid that everyone have quality healthcare:-(

  6. Before anyone heeds Ellen's warning after reading my post: "You may be stricken with a sudden urge to move to England."

    Beware. If you move to Britain, you will never eat Ranch dressing again. You will eat baked beans for breakfast - and your bacon will never be crispy.

    Heed my warning: you may receive better health care, but your meals will be forever lacking :)

  7. I have relatives in Canada who are under a similar state program. The care is there but sometimes you do have to wait or travel across the country to get the operation you need (it's a regional thing, I guess and the less populated areas have more openings than the ones near cities). If they really want an operation in a hurry, they'll pay out of pocket and go to a third world country to get it! Really! My great uncle got a new hip and a vacation to/rehab in India, of all places! It wasn't cheap but beat waiting a year, so he said.

    Also, you aren't going to get any brand new or experimental treatments from the state. You want that, you have to go get it and pay for it.

    You also can't just GO to Canada and get the health care. You have to be a citizen. I think it's the same deal with the UK. Living or visiting there isn't enough. You have to be part of the system.

    I'm a Democrat because I like the idea of some sort of health care for everyone. There should be a baseline, anyway, and if you're rich, well, pay for the extras. I don't understand why some people think it's a bad thing.

  8. Also, in response to Kim who said, "Health care in Britian is not free...the citizens pay for it."

    As I said in the post, it is free on the point of delivery. But that doesn't mean it is free. Like I said, a percentage of our salary is deducted automatically from all our pay checks. It is called National Insurance.

    But, besides some side charges, like prescriptions for adults (£7.20/$12 set rate for all medications and there are some exemptions) - you never pay outside of that.

    See this page for more details about what we do pay for outside of our National Insurance contribution:


  9. Yes, paying national insurance is nothing really when it means that in the last month I have had my rubbish removed regularly, streets cleaned, hand mended and examined regularly after breaking a bone, a social worker offering to make phone calls for me if I found it too stressful, an OT going out of her way to get a proper sensory assessment done on my eldest child, put on the waiting list for a free major buggy for my son, met with an NHS run support group for parents of kids with ds, met with a health visitor for advice on weaning my baby, had a phone call from a professional just to check that I'm happy with how my three year old is getting on ... ALL FOR FREE!

    There is no point at which someone says, "you've had enough help now". We have had amazing provision and if it depended on our wealth (rather than a very small percentage of wage going to NI) we could not afford to help our son effectively.

    For all it's failings and pitfalls I couldn't love the NHS more!

  10. Australia is supposed to have a similar system however it fails miserably. We have gap payments on everything. Huge waiting lists. Therapies like PT are only subsidized to a maximum of 5 sessions per year. Adaptive seating isn't covered at all, wheelchairs only partially covered so long as you choose off a very limited list. No assistance with home modifications or car mods.

    We can take out private health insurance to reduce the gap and assist with therapies, but it still doesn't cover adaptive equipment.

    And we still pay for the health system through a levy on our income.

  11. Stacie, thanks again for the guest post. Felicia, I have long envied Canada's medical system (though I would be curious to hear from a mom there about how it does/doesn't work for kids with special needs).

  12. Very insightful! We lived in Germany for almost 7 years total and received healthcare by both our U.S. military specialists and the German civilian doctors.

  13. Hi all.

    Ellen, I love your blog and follow regularly.

    I am a mom from Vancouver B.C., Canada, and I have a son with Sensory Processing Disorder. Although it comes with some frustrations and pitfalls, I can't brag enough about our medical system.

    My son receives speech therapy, physio and O.T, all for free. Yes there are waits. And yes, you still have to advocate as a parent and do your research and know your stuff. But my son has all these services and he is only 28 months old. He was low on on the priority list, since they go by who needs it most, but he has still come to the tops of the list at this young age. Also, while i was on the list I paid for some private therapies, so it's not like the option is not available if you can afford it. You can budget accordingly, public or private.

    I can't imagine living in a country where you could be turned away from health care or therapies if you didn't have the money or coverage. It doesn't even seem first world to me. Everything health-wise is provided for here. Yes, we pay a tax off of our income for this, but I don't know a single person who begrudges this small amount of money in exchange for such a strong sense of security should something go wrong.

    It's true that experimental stuff gets more tricky, though there are even ways around this. Overall, the triage system is very good and almost everyone with a serious situation gets taken care of very efficiently. Of course the few cases where something goes wrong get completely sensationalized in the media.

    For the most part we are taken care of incredibly well and everyone is happy to pay the tax for it. Surgeries/medications/specialists/appointments/evaluations/ -- everything is free. I can't imagine having to fight with insurance companies on top of all the other advocating we do as parents. What a nightmare.

    I have some friends from California who recently moved to Canada for that very reason. The wife was Canadian so they decided to do this for the future of their two children since their medical bills were always haunting them. Two weeks after they moved here, the mom broke her arm. They went to the hospital and got all fixed up. X-rays, set bone, cast, etc. Then she was sent home to rest. They knew they had made the right decision to move when no one billed them!It was all free.

    Myself, I can't imagine getting a bill for such a thing! I really feel so much empathy for those who can't afford health care in our sister country. It seems unfathomable that one should need to 'afford' basic health care.

  14. Just to clarify. I do use the term 'free' a few times re: our health care system. In actuality we do pay for it. But as I said, it is a small amount per month, according to your income. So it feels 'free' considering what we get in return. :)

  15. What a great blog Mama Lewis's has led me to, thank you :)

    Just to say that we did the reverse a few years ago and my husband collapsed in America, in New York state whilst on tour with an orchestra and was left completely paralysed from the chest down.

    I had a phone call from an american doctor who said a) I needed to get out there asap and b) he wasn't sure if my then fiancee would ever walk again.

    Well, I got out there to find him in a spinal unit, and I was bowled over by the instantaneous treatments, no waiting, nurses who had time to linger, same day results for tests. Staff who had time to spend with their patients and he amazingly made a full recovery over time. ( the short story is some alien blood vessels at the top of his spine burst, and the blood ran into his spinal cord causing the paralaysis)

    And yes, on our return home to England, the follow up appointments had to be waited for, they lost his x-rays..etc etc

    But, it's a VERY sobering thought, that had we not taken out extensive medical insurance before his trip...he wouldn't have even been treated, or most probably we would still be paying for it now. The Bill ran into tens of thousands of pounds.

    I've got lots of issues with the NHS. They caused my daughters Cerebral Palsy, due to medical negligence however, they also treat her. There are some therapists who I am incredibly grateful to, we love them, and they support my child unconditionally.

    We would have really struggled when she was born without the 'free' NHS- but they are the reason we need them. I can't get my head round that.


  16. Well, my son Sebastian was born in London, UK and his cp was also caused by negligence, the maternal care there needs to be reevaluated. Two months after he was born there was an investigative report about thevfailing maternity care in The Guardian newspaper. I digress. He too had excellent care in the NICU and follow-up with therapies and home visits from the time we went home. We moved to Egypt when he was 4 months old and were still paying for NHS and private insurance, so we were able to go back to UK for an MRI at 5 months. With our private insurance we saw doctors in Australia, where my husband is from and Michigan, where I am from. Our private insurance was international (my husband is a journalist) and we got 90% reimbursed but no equipment covered. We had private therapy in Egypt covered by insurance and went for doctors and specialists visits outside of the country. We are now living in Toronto and it has not been easy to get into the system. You have to wait about 3 months to get your health card so you do pay for doctor visits and trips to emergency. We did have private insurance to reimburse us for the costs. The wait lists for services are also long, we are just starting to get into dr appointments with referrals made in August after I finally found a ped. Willing to take us on. The wait list for PT and OT here is 8-10 months just for an assessment then another wait for services. We are also on a seating/mobility clinic wait list. We didn't get an appointment with a gastro specialist until February. Things are starting to come up but other things are still a long wait. We pay over $1000 for private therapies a month right now, we can't even afford to get a car to get us to them. We have additional insurance for dental and eye, but it doesn't cover nearly enough for therapies per year and it doesn't cover OT at all and private therapies are really expensive. There are programs that help pay for equipment which is good, we did a fundraiser prior since we had nothing to help with that in Egypt. I could go on but I'm hoping things will balance out in a years time but until then, the budget is very tight. There really is no perfect system. And patience is required. A lot of it.


Thanks for sharing!

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