"Record keeping"

About: North West London Commissioning Hub

(as the patient),

I really feel strongly we should have access to ALL our NHS data. I am Australian, UK based and I travel a lot, so it's incredibly important to me personally. Bio feed back, data monitoring by the patient not the system surely is the way forward for everyone.

I have investigated systems like Patient Knows Best and just wish my GP engaged with one. Almost ANY ONE would be fine with me. If anyone is seriously looking at GP management surely there is a group who care about this issue?

My background is in IT and nothing seems to have changed since the 1980s that huge system Blair wasted money on was totally wrong. I knew people who worked on it.

I hope this not too personal I want to be constructive and to point anyone who might be looking at this issue at the way they developed the award winning gov.uk web site.

I had reason to use this in August, as my London neighbour is planning a basement conversion, the link on Camden's letter was WRONG - it’s not just the health people who have rubbish data. I had heard about the award and found the PLANS in less than 5 minutes. I was super impressed.

If I have a blood test privately or via a private consultation they email me my test results, thoughts it's all really straightforward I file everything in date order and can get back to it easily. It’s not a database but it works pretty well 99% of the time.

My husband and I both run a blood pressure app on our iphones and find it incredibly helpful in maintaining our best levels via exercise, emotional well being, meditation etc its instant feedback on how your lifestyle and mind set affects your body.

We are the product of our past and our long term data matters a lot. My GP NHS system seems to hold almost no information about me and my history. I understand the health service cannot manage much more BUT why can I not hold and manage my own data and SHARE it with the GP ?

I manage my financial affairs, endless accounts, tax records, passwords and cards so surely my health event data is better managed by me than some central system.

I really really hope this is changing but right now in 2013 in central London where i am, it’s virtually impossible to get an electronic record of NHS happenings, even simple things like blood tests. A print out, given reluctantly, has to be scanned by me yet it came digitally.

My last blood test is a good example; they failed to check my thyroid which was the ONLY thing I asked for specifically. I took a computer generated sheet, one copy, to the blood centre they took it away from me, leaving me record free. When I went back to GP for results the thyroid was missing. I go elsewhere for hormones as the NHS will not prescribe the armor thyroid I use. So I had to do another blood test privately.

Every time I visit my London GP, it’s a new registrar on a year’s training; we seem to start from scratch. They usually have one fact they like to focus on. Lately it has been my wine consumption. I drink a couple of glasses of wine a day less than I used to definitely and about where I plan to stay. I am slim , exercise a lot and eat very healthily I walk everywhere at least 10 Km most days. They don't bother holding this. One asked me the other day if I could I walk up stairs. They never can tell me what vaccinations I've had.

Yours sincerely and thankyou for your time, your web site is great and congratulations on winning Best use of social media in healthcare recently.

Do you have a similar story to tell? Tell your story & make a difference ››

Updates, changes and questions related to this story