As patients in the UK do we have the right ... - PBC Foundation

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As patients in the UK do we have the right to ask for all information pertaining to our disease...

SamT profile image
SamT
4 Replies

such as blood tests, biopsies, scans.

A few of us are getting frustrated by the NHS and would really appreciate some help on this.

Thank you xx

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SamT profile image
SamT
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Val02 profile image
Val02

You have the right to see anything you want to. Unfortunately many doctors are not keen on the idea although the good ones seem all to ready to share. Im afraid with many things it is a case of asking for a copy of your results as suppose to getting things automatically. After seeing a consultant before you leave ask to be copied in on letters to your GP, copies of results etc. Probably the easiest route is to go through your GP and explain what you want to know. I know at my GPs she has access to all the hospital records and is quite happy to print me off a copy. Telling your GP not having the results is making you anxious is not a bad move either ;)

kosy2 profile image
kosy2

fFound this web site - it seems to have the information you need. From what I get after only a brief look is the you all in the UK have the same rights and us in the USA to your medical records. GOOD LUCK

nhsmedicalrecords.org.uk/

EAJSWW profile image
EAJSWW

You have the right to ask to see your medical data under the data protection act. However you will often only get to see parts of it, as I believe dr's are allowed to wthhold any information that could cause harm to another person or could infringe or their own rights.

However your medical care should be a partnership, and if my dr refused for me to see my results or to explain what care / drugs I was recieiving and why, I would be very suspicious.

My consultant always writes to me to let me know my results, and he always turns the screen toward me when he is looking at tests etc on the system. Thing is we can't have it all ways.

When i was in the waiting room a couple of weeks ago waiting to see my consultant, a lday was moaning big time to the receptionist about having to wait so long. She then turned to me and said... "He better take his time to answer all my questions and talk about my results as well" She just couldnt see that the reason she was waiting so long, was because he is a good dr and does take the time to go through all the tests etc with each patient, this invariably leads to long waits.

I think if we explain why we want to know our results, but also ask the dr's to explain what they mean, they are understanding. its when people get results as a set of numbers then shout in self help forum how their numbers are worse or better than someone elses. We have a duty to help our selves by doing what we can to help ourselves, and also by giving correct info to docs, and to be polite to them when they seem harrassed... i wouldnt want to do their job... i thank God for the NHS, When I think of what our non NHS friends have to pay for treatment, it is scary!

I definitely do like to know how the blood results are exactly and I know had I not have asked or even pushed last 2 times at the GP surgery then I'd not have got more than the usual, 'Not so good, repeat....' or "Very good (at the mo).....'

Last wk I had repeat bloods and had to ring the surgery not the once to ask if results there (to be told the doctor said they were 'very good' and repeat again 3mths) but twice as request had to be relayed back to the GP when I wanted the print-out of them.

I got them yest and to me they were important as 5mths into the urso which was May 2011 I had had really promising results but then come last Oct they had started to elevate and continued as the March 1st one showed. I wouldn't have known how 'very good' they were without seeing the figures and when I did yest., I discovered the doctor had only compared them to the March 1st ones and NOT previous results last yr. I noted that my results were as good as May 2011 and also 2 a bit better than May 2011 so they had decreased quite drastically since March 1st. (I put that down to the milk thistle capsule I make a 'tea' with once a day now as well as still taking usual urso.) Of course it only took me 10mins to compare the results to the previous ones I have since 2010 and then I like last time when they weren't so good, have put them away and I won't think about them again now until the next set comes along.

BUT also I know that around 5yrs ago now I applied for some life insurance and honestly said at the time I had not seen a doctor except for a couple yrs prior and I had mild anaemia which was fully treated for a mth. I got asked to go for a medical by this insurance co and I questioned it as I didn't think I had anything wrong with me. I managed to get information that from my medical records the GP had sent that there had been a query on a blood test taken same time as the ones for anaemia that I was never aware of (as I'd contacted surgery and been informed mild anaemia, script for iron tablets for a mth to collect and then when they were running out go back see doctor for repeat blood, nothing else amiss apparently). I contacted my doctors and asked them about this and I was informed by one of the GPs he had checked my records and nothing else there.

It was only just before I was diagnosed the hospital consultant informed me that back around 5yrs ago when I had the bloods for anaemia I had unknown to me at the time had bloods for LFTs and had shown 'slightly abnormal' and to what he said was they were never followed up!!! My point here is that at times if a patient isn't aware of what is going on, what tests, etc then if something is missed as is possible then being more in the loop with these things a patient may be able to question certain aspects of a blood test for eg themselves.