https://digitalhealth.blog.gov.uk/2010/12/14/a-wonky-gene-and-the-web-my-son-and-my-job/

A wonky gene and the web – my son and my job

My son has a wonky gene. It's a gene that affects the structure of the body in the womb. As a result he was born with a few bits of his body not quite finished.

Stanley, standing in a field

The biggest problems that this caused him have been the result of his unfinished larynx, which meant that he was unable to breathe or swallow properly when he was born. He had the gap in his larynx sewn up when he was a couple of months old, using a bit of tissue from behind his ear. But he needed a tracheostomy to breathe until he was two and a half, and he is still entirely fed through a tube into his stomach.

He has spent large parts of his life so far receiving extraordinary treatment and care in London hospitals, in Great Ormond Street, Guys, Kings, and Evelina and St Thomas'. And he has been looked after at home by community nurses, as well as getting loads of support from his GP, pharmacist and PCT.  He has a set of patient notes that fill a whole trolley - I'm always amazed when they turn up by his bedside whenever he is in one the hospitals.

So why am I telling you this on a blog about digital communication and the Department of Health? Well partly to provide some personal context. I'm sure that everyone reading this has their own personal experience of the health and care system, which will shape their views of the Department I work for. I've had more than my fair share of exposure to it in the last 3 years, which partly explains my motivation to do this job.

But also because, through my son, I have learned what a central role the web can play in health and care. The web has played a crucial role in my son's life, both in his medical treatment, and in my ability as a parent to provide care. How?

Well in the early days the web enabled me to learn about my son's syndrome long before his geneticists actually identified the gene. I really don't recommend others do this, but I learned a lot about what to expect from a medical wiki after typing his symptoms into a search engine. And the information I have found online, from official sources and bloggers in particular, has helped me to understand complex medical conditions, and to put his day-to-day problems in a wider context.

I watched other parents perform an emergency tracheostomy change on YouTube, which gave me the confidence to care for my son when he left hospital for the first time. When his tube blocked at home, I was grateful for having seen other parents calmly swap one tube for another.

I am in touch with another family who are dealing with the same rare condition through Contact a Family, the dating service for parents of disabled children. And although I have never physically met them - or anyone else with his particular syndrome - I have remained in regular touch with them through Facebook and Twitter.

Through them, I have connected with other families around the world in similar situations, and they have provided an invaluable support network at times when we might otherwise have felt very isolated. The ability to compare notes over the web with others going through exactly the same things has often been as valuable to me as official advice.

If my son had been born 10 years ago, his medical treatment would have been largely the same. But I would have been far less informed about his condition, and it would have been much harder to make contact, or stay in contact, with anyone else with the same condition. I am much better able to care for him because of the web.

This sometimes seems quite a long way removed from my day job. When I am working on finding better ways to publish policy documents, run effective online consultations, or communicate the proposed changes to the health and care system, it's difficult to imagine how any of it will affect my son's life directly. But of course, that's really what it's all about, and I often think about his life, and the lives of others like him, when I'm wondering about the point of what I do.

So you should find out about the plans for the future of the NHS, and public health and social care, because it does affect you and people you know. You should have your say about the best way to provide official health information, be it through NHS Choices, NHS Direct, 111 or others. You should have your say about patient choice, food vouchers, and patient records.  Because it really does matter, and because the web can immeasurably improve people's health and care.

6 comments

  1. Tweets that mention Stephen Hale - A wonky gene and the web – my son and my job -- Topsy.com

    [...] This post was mentioned on Twitter by Steph Gray, Marilyn Booth, LouLouK, Department of Health, Mrs Blogs and others. Mrs Blogs said: RT @hmshale: Posted a blog: A wonky gene and the web – my son and my job http://j.mp/dJ5eKk [...]

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  2. Anonymous

    Powerful stuff - written from the heart, and just about as good a blog post as I've ever read. Thank you so much for sharing this, and strong positive thoughts with you all. Inspiring and deeply moving.

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  3. Robert Rockstroh

    Great to see how the internet has brought together people with shared experiences from different parts of the world.

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  4. Public Strategist » Interesting elsewhere – 22 December 2010

    [...] Stephen Hale – A wonky gene and the web – my son and my job If my son had been born 10 years ago, his medical treatment would have been largely the same. But I would have been far less informed about his condition, and it would have been much harder to make contact, or stay in contact, with anyone else with the same condition. I am much better able to care for him because of the web.This sometimes seems quite a long way removed from my day job. When I am working on finding better ways to publish policy documents, run effective online consultations, or communicate the proposed changes to the health and care system, it’s difficult to imagine how any of it will affect my son’s life directly. But of course, that’s really what it’s all about, and I often think about his life, and the lives of others like him, when I’m wondering about the point of what I do. [...]

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  5. Adrian Robertson

    I had exactly the same experience with my youngest. A rare condition, great care from Evilina and support from the web when the (excellent) medical team had to give advice in a certain way. A few hours on the internet and the best and worst outcomes were identified....something that would not have been possible when I was born.

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  6. francis

    thanks for this. great to know that there is access to vital info when it is needed and the more reason why social media should be unblock whereever possible and in all places.

    http://www.direct.gov.uk/en/index.htm

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