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Pernicious Anaemia Society

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Petition

lesbud1 profile image
32 Replies

I have started a petition to stop NHS hospitals destroying notes after 8yrs of no contact with them. please read and sign if you agree. Change.org.

thanks chng.it/Ljyg6sMwTy

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lesbud1 profile image
lesbud1
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32 Replies
nano2 profile image
nano2

Hi lesbud. Where’s the petition?

lesbud1 profile image
lesbud1 in reply to nano2

sorry I will edit it. change.org

nano2 profile image
nano2 in reply to lesbud1

Okey dokey. Have you put it on Twitter or FB for a larger audience ?

lesbud1 profile image
lesbud1 in reply to nano2

yes put it on my fb and twitter but don't know where else to share it.

nano2 profile image
nano2

Tag a couple of the media in your posts

lesbud1 profile image
lesbud1 in reply to nano2

showing my age now. how do I do that?

nano2 profile image
nano2 in reply to lesbud1

Not sure on FB I don’t have it. Look for same as BBC or a newspaper under their name is @ click and copy to your post

lesbud1 profile image
lesbud1 in reply to nano2

thanks. have tagged bbc and itv news. who knows they might be interested.

spacey1 profile image
spacey1

Who destroys notes? I work for the NHS and we have always kept notes for many years. I've never heard of an 8 year destruction policy

lesbud1 profile image
lesbud1 in reply to spacey1

NHS hospitals have the right to destroy notes after 8yrs of no contact with them. BMA guidelines. A hospital has destroyed mine as they tell me it is their policy. DJR1 has put a link up from BMA.

EllieMayNot profile image
EllieMayNot

Similar here in the US. Daughter trying desperately to get past medical records for new health insurance, seems no one has them any longer. Feeling your frustration!

lesbud1 profile image
lesbud1

what is going on in the world. It feels like they just do what they like without any consequences and we have to put up and shut up. this just can not be right.

fbirder profile image
fbirder

How long should they keep notes?

lesbud1 profile image
lesbud1 in reply to fbirder

are you asking my opinion or the facts? I think they should keep them or archive them so they are accessible. If they copied them electronically that would be a good way to store them. GPs notes 10yrs after death recommended. seems sensible to me to do the same with hospital notes?

bma.org.uk/advice/employmen...

fbirder profile image
fbirder in reply to lesbud1

That's going to cost a lot of money, transcribing decades of paper notes into an electronic format. Or storing tonnes and tonnes of paper.

lesbud1 profile image
lesbud1

well they could photocopy them but if storage is better then so be it. if they are legal documents then they should be kept until a certain amount of time has lapsed after death, they could send them on to the next hospital as gp records are, that would be a sensible answer.

fbirder profile image
fbirder in reply to lesbud1

I can't think of another sphere where records need to be kept forever. Accountants need to keep records of past clients for just six years.

And it would mean some records being kept forever. Over the last five years I have been seen at six hospitals and my GP. My records for UCL are about 40 pages plus a CD-ROM. It is unlikely I shall need to go there again. There is no way for them to know if I am still alive or not. So those records would need to be stored forever.

It is unlikely that I will ever visit two of the other hospitals. So that's two more lots of records that would need to be stored indefinitely.

lesbud1 profile image
lesbud1 in reply to fbirder

if a hospital requested the notes from previous hospitals like the gp's notes then there would only ever be one set of electronic notes. if you would like you notes destroyed I think it is up to you the same as I think it is up to anyone else to have a say on what happens to their notes when they are still alive. indefinitely is not the question a reasonable amount of time and access to them is the issue. you can not challenge your treatment if there is no record of it.

fbirder profile image
fbirder in reply to lesbud1

Yup. I agree - a reasonable amount of time.

So how long is reasonable?

Personally, I think that letting people know about the 8-year rule should be enough. Then they can request their records if they think they're going to want them. That's why I've just requested mine from UCL. Because I thought I'd be better at storing the records than they would be.

Iesgobdafydd profile image
Iesgobdafydd in reply to fbirder

Birth, marriage and death records are kept forever by the government. So are census records and many other kinds of information. Obviously keeping records forever isn't free, but someone's medical records from ten years ago can contain valuable information if they are trying to figure out what is wrong with them now. I've made repeated use of my GP's medical records about me from the past 20 years since we moved to this area, which are available online, and tried to access my homeopath's records about the treatment I'd received from her only to find she'd destroyed them because I hadn't seen her in some years. I'm not upset she destroyed them, but the information could have been useful to me. I think hospitals should keep medical records until the person would certainly be dead based on age, or at least seek consent before destroying them.

fbirder profile image
fbirder in reply to Iesgobdafydd

My BDM records, plus census records are 8 pages.

My medical records from one hospital that I visited on three occasions are 35 pages, plus one CD-ROM. My Patient Record from my GP, over just 4 years, are 27 pages.

Add in the four other hospitals that I've been to in that time and my total records are likely to be somewhere around 200 pages. Over 4 years.

The NHS deals with over 1 million patients every 36 hours - nhsconfed.org/resources/key... - That's 2.4 billion a year.

A lot of the records I got from UCL are electronic. Once the NHS manages to get a holistic computer system (which they have failed to do, despite spending tens of billions on it) then it might be possible to store all of that data indefinitely. But I doubt they will ever decide that keeping paper records for more than a decade is sensible. Nor will it be a good use of limited cash to digitise it all.

Iesgobdafydd profile image
Iesgobdafydd in reply to fbirder

My understanding of the situation from what has been said is that the current situation is that they are only allowed to destroy records when they have been out of contact with the patient for 8 years. In other words, records are already routinely being stored for many people for far longer than that, and the storage costs you are so concerned about are already being paid in their cases. I'm not a frequent hospital user, but between routine tests everyone gets and occasional referrals to specialists, I don't think there's been an 8-year gap over the last 20 years when the local hospital could have destroyed my records if they wanted. On the other hand, hospitals in areas I lived previously could have destroyed my records by now. In other words, people who move around are being unfairly discriminated against in the current situation.

I was discussing this with my daughter yesterday evening. She has had to deal with the data management laws both for an international bank and now a school. She is adamant that whereas banks, businesses and the like are required to keep records for 7 years after the closure of an account medical records have to be kept similarly but the closure of the account is the date of decease of the person the account refers to. It may well be that your health service is using a different interpretation of the rules. It may be worth checking this out before leaping into action.

lesbud1 profile image
lesbud1 in reply to

I have checked the BMA guidelines and they say 8yrs after conclusion of treatment or death so I am in no doubt what they say or what the trust has told me. It is a scandal that most people are unaware of. This hospital has destroyed my notes and says there are no copies.

Miss-guineapig profile image
Miss-guineapig in reply to

I agree Kcbrecks, records are normally kept for 10 years after death x

lesbud1 profile image
lesbud1 in reply to Miss-guineapig

please look up BMA retention of notes. I am not making it up. they have destroyed my notes and are happy to say they are allowed to do it.

Miss-guineapig profile image
Miss-guineapig in reply to lesbud1

That's not good to hear, keep us informed how you get on lesbud x

lesbud1 profile image
lesbud1 in reply to Miss-guineapig

will do just make sure if you want to keep your hospital notes to apply for them before the 8yrs contact rule is up.

I was interested in the way GP records have to be treated and this is for the lifetime of the patient and 10 years beyond. Their electronic records have to be kept in perpetuity. This should mean, assuming all other parts of the Health Service do what they should, the GP records should have all the details of what, when and where for all of their patients.

It actually makes sense to do it like this. The GP becomes the repository of all data applicable to you so they, as the first point of contact, have the comprehensive data rather than having to garner it for many possible data holders.

At one period I had great difficulty with speech, running out of the necessary wind to talk, so I used to correspond with the GP by letter and hand them a report of condition when attending face to face. On one consultation the senior practitioner went through my file and we agreed which of my communications had actually been dealt with, so they were recorded, and removed them from the file. There were also the reports from all of my various hospital examinations and treatments.

As it is the GP who refers you to the hospital, unless it is an emergency, then the GP gets all of the reports and results. When you attend the Accident and Emergency Department of any hospital they ask you which practice you are registered and which is your GP so eventually they will be sending details of your case. So have you tried asking your GP if they have your records, including your hospital attendances and treatments.

So long as there is one set of records archived that should be sufficient, assuming they are safely kept. Even with the data storage capabilities of current

electronic media it must be a mammoth task to maintain and will just keep growing. Perhaps this is a lesson to us all that we need to truly be the Worlds Leading Expert on us and maintain our own medical records ourselves. Despite the scepticism expressed elsewhere our records may have to be accepted as valid as a professional degree and qualification does not guarantee veracity.

lesbud1 profile image
lesbud1 in reply to

not all treatment and things that are written in hospital notes end up in the gp surgery. I would like the option to have my hospital notes before they are destroyed or kept until after I die please so that any challenges have the original evidence.

Miss-guineapig profile image
Miss-guineapig

My understanding is that the NHS keep records for 10 years after death. The old Paper records are normally put onto microfilm, so there is still a recorded. New records are all on computer. My apologies if I am wrong but legally I am not sure that re rods can just be destroyed...well not before copied to a different format. Also many old re olds are stored within secure area within NHS. Saying all that if a petition is needed I will gladly sign. Good luck lesbud1

lesbud1 profile image
lesbud1

yeah that's what most of the public think. the hospitals are within their rights to destroy notes if you have not made contact in 8yrs. it is as simple as that. look up BMA on retention of notes. says it all. gp notes are kept after death not hospital notes.

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