access to medical records: it says that... - Fibromyalgia Acti...

Fibromyalgia Action UK

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access to medical records

36 Replies

it says that access to patients medical records should be available for patients from april 2015 but is down to the doctors to decide if they allow this.

does anyone have or has anyone had access to their records?

36 Replies
tracynoe profile image
tracynoe

I have access to my Summary care record is that what you mean

in reply to tracynoe

yes it is.what is meant by summary care record?

tracynoe profile image
tracynoe in reply to

Mine lists my current medications on repeat any medication given as a one off in the last 12 months and more importantly for me all allergies and reactions to any medication for my whole life. I can see mine when I log on to systemonline

Lruk profile image
Lruk

You shouldn't have any problems getting access to your medical records. I haven't had to ask my GP but I have had my records from our local hospital and there wasn't even a fee payable.

in reply to Lruk

i have had copies of my records in the past and had to pay for them

Stephrm44 profile image
Stephrm44

You have a right to see your records as you say and I don't think the doctor can refuse. There are several different policies that cover this. You should be able to look through your records at the surgery accompanied by a member of staff. I haven't seen my records but work in admin for the NHS and we do training on this.

Sewnsew profile image
Sewnsew

I have had access to my medical records at the surgery for some time now. I log on the Patient Access site and can view medications and order repeat meds, view consultations, letters, test results. It makes life so much easier.

To view hospital records I first spoke to the PALS service who advised me to speak to Medical Records. They sent me a form to complete and I'm just waiting for a copy of the records now. No charge so far!

in reply to Sewnsew

hello SewnSew

when you viewed your records did they show the full consultation it what you and you gp said,

should I put my request in writing?

Sewnsew profile image
Sewnsew in reply to

Hi, sorry for not replying! Not logged on for a little while. I can see you have got some good advice though. Good luck, hope you get your records.

This unfortunately is not available in Scotland as yet, shame xxxx

mattoid-mags profile image
mattoid-mags

Hi, I'm so glad this question has been brought up. I often think about wanting to see what is in my medical records, now I know if I want to see them, I can do. Thanks, Mags xx

Liz62 profile image
Liz62

I have requested my medical records from hospital. I live in Scotland. You have to contact the legal department to get a form to get your records. Will cost me between £10 and £50 depending on how much of my records I want to access. On the form it does ask dates and even department you are requesting to see. The form has to be witnessed by a third party before you send it off. and they have 40 days before they reply. Seems everyone you have seen in hospital has to sign off on you being able to read your own medical records. I sent mine off nearly 3 weeks ago

My hubby picked up forms from our GP last week so that we could make appointments and order perscriptions on line.

The form also allows you to access your records but does warn you that you may find something in your records that may upset you and that you can opt out.

If you opt out you can opt in at a later date.

I dont think that i want to see my records, I know that i have been close to death 3 times, i just dont think that i want to know how close.

It was made law in England & Wales in 2013 that patients could access their Medical Records. Unfortunately not all Drs make their patients aware of this. In my practice in Somerset, I can make appointments, order repeat scripts, and send a short note to my Dr. I also applied to access my Medical Records, and can now do this on-line, along with reading Test results, and Hospital reports. This is done through accessing Patient Access which Sewnsew above mentions. I have an App on my iPad to do this. Your GP has to pay Patient Access for the software to do this and to keep their Practice Records up to date, but it doesn't cost the Patient anything to access their Records on-line, but if they wanted print outs you would have to pay for the cost of them, but it's not very much. You have to fill out a form to access your Records, and there is strict access security via passwords etc. But once the forms are finished it is very easy to do.

If your your GP practice doesn't use Patient Access, then you have the right to request your Medical Records, and they cannot refuse, but you may have to pay the cost of having them printed out.

Good luck with your quest, and I hope it works out for you.

GJ 😊

in reply to

if its law in England then why aren't they available online for me to see?my gp has patient access but can only book appointments or order presciptions Is it that they don't want to rather than not being aware?

TheAuthor profile image
TheAuthor

As far as I am aware, anyone in England and Wales can access these. I wan to genuinely wish you all the best of luck with this.

Good luck

Ken

janh profile image
janh

Hi there

I'm on the patient participation group at my doctors, and this came up. The problem is that on our records,there will be loads and loads of awful hurtful comments. The drs in times gone by would put things like "wasting my time" "hypochondriac" "here she is again" and much much worse. I've been ill all my life and it took 55 years to get a diagnosis.

I can't even imagine what's on mine. We will all be the same as a diagnosis can be so hard to get. The drs are really worried about the patients seeing all this, but really what can you do about it. We go through so much trauma every time we see a Dr we can't worry about this.

Our doctors haven't decided how much they are going to release and the government recommendation isn't clear about what we can or must see. It's all very vague.

Good luck

Jan h x

in reply to janh

Hi Jan

now I know my records cant be accurate .i wrote back to the practice manager and almost everything she said was wrong,she had the wrong dates for scans and appointments,claimed test results were "normal"when I hadn't even had the scan done.so who knows what else he has recorded.

tried to worm her way out by saying they were "saddened to have to let me go".rubbish they couldn't wait to find an excuse.and have not accepted any responsibility.

they said I had specifically seen 2 doctors re enlarged tongue and swollen lips.both times I went for something else and they pointed out my lips and tongue were swollen yet ignored enlargement of hands and feet,nose and head.

in reply to janh

they wont let us see our notes incase someone may sue them for false representation(not right word probably but cant think of any other).

in reply to janh

Hi Jan got my notes and gone thru them.no extremely hurtful comments but

he has recorded a lot of stuff never mentioned/discussed at consultation and everything put down to fibromyalgia and IBS when no mention/diagnosis of IBS except in a letter "suggesting" it and endoscopies etc revealed other conditions. and no record of his actual comments,(he wouldn't record them for fear of reprisal but I have kept a detailed diary of consultations and what was said/discussed.

janh profile image
janh in reply to

Hi there, lucky you, it could have been so much worse. It's all turned out ok. Happy days. Best wishes always jan h

in reply to janh

thanks Janh.yes it could be worse but also he has never actually diagnosed IBS -it was assumed based on tests for ovarian cancer/cysts being "normal".and then it changed to be "fat redistributes itself " dismissing the fact that my whole abdomen was painfully sore to touch and tightness from clothes as it swelled.fat doesnt cause pain.there was another HU Member who wrote on a forum that they had had scans and said to be clear when in fact they had a huge cyst growing.

Because he has put IBS in my notes (and then changing that to "fat redistributes " "it s menopausal"(not cos 6 years on from that and no symptoms associated with menopause.what ive said never changed apart from amount of pain ,distention and weight gain/loss.)the GP I have now wont accept I dont have IBS or am not obese and its not anxiety despite a gp at the other practice accepting this and starting investigations for possible pituitary problems.so thats where healthwatch have come in,.they are going to draft a letter for me to view and OK and to make an addendum in my notes .she did agree that i was wrongly made to suffer for over two years until another GP arranged scans.

janh profile image
janh in reply to

Hi, your story could be about anyone of us. Frustrating is nowhere near an adequate word to use. We've all been from one Dr to another, to another 20 or more times over and been given one diagnosis after another or no diagnosis at all. We've explained our symptoms hundreds of times over. The Drs simply do not know what is wrong with us and worse how to treat us. My disease is so rare that it is named after me but incorporates nearl all the diseases on health unlocked. At the moment there are 9 others like me. IBS is impossible to diagnose, and a lazy term when it is. I cannot eat about 95% of foodstuffs and am hugely allergic to most drugs.

At my worst I am allergic to water, both drinking and it touching me. When I am in that state my life is in danger.

I've learned to accept what is and realise that how ever much I have railed against it, cried, screamed I can't stand it, nothing changes. I've got past the frustrated part as now I carry letters everywhere I go that explain where I'm at with this illness. The Drs then don't waste my time with inane comments, ridiculous repetitive questions and don't look at me as though I'm making everything up.

Since my spine was shattered in an accident 2 years ago, my stomach swells up and I feel 9 months pregnant with Branson hicks contractions. I'm 63 so unlikely I am unless God visited me.

My stomach has always been at the very centre of my illness. If that is not right all my symptoms are so much worse. I now take prescribed enzymes with every meal which really helps but is not 100% effective when I have a flare. It took me ages to get them but I wouldn't leave the consultation til I got them. I'm now very outspoken and and it works because I rarely get a bad Dr. Fight for your corner and be consistent. It takes a lot of strength but it gets soooo much easier as time goes on. I used to get so tearful in the end but not anymore. It's made me stronger and more determined to life the best life I can and believe me it is very difficult as I have so many diseases wrapped up in my body. It doesn't seem possible no one has ever seen anything like it before. I have just had my 5th op on my right foot foot and can't walk for a couple of weeks and the it's the 6th op on my left foot. Mindfulness is magic please try it.

We can work it out, don't fight it work with it. Look at what you have eaten, medications, and when you might be flaring, the answer might be there. Mine was. Now because I've lost nearly 6 inches in height there is no room in my stomach for a lot of food and that then traps wind which will make your stomach hurt and swell. If you are eating something your body doesn't like you will get trapped wind. But work out with astrict diary as I did, and it took a good year, and you may find the answer. Let me know how it goes and if I can help at all please just tell me I'm happy to share what I know and it may be that you can help diagnose what it is.

Drs are limited in what they know and accept.

Best wishes always man h

I ordered my med records from the hospital back to 2011 and cost £50 all printed on paper. I didnt know I could have had them on disc for less. I received the papers after about 4 weeks from my request. I think there is some missing but they have included all the blood tests I have had done since 2011 and I can see my TSH thyroid measure increasing every time since then. It also included a disc with my xrays on which I found really interesting as I hadnt seen these and now I know why I have so much pain in my joints. I did it to get as much evidence as I could for my benefit claim to send the DWP the relevant pages including letters to my GP from consultants which I hadnt seen. I think the GP notes will need to be requested separately though. Gentle hugs Joolz.x

in reply to

hi Joolz

I have contacted the hospital to see if I can get my notes from them and written request to the pm at the surgery .If they query as to the reason why ,I shall say its for any future benefit claims.

in reply to

I dont think you need to tell them why your are requesting your med records as it is under freedom of information act. I know I didnt get all of my records as I had a meeting with a consultant recently and she was saying things from my records which were untrue. I have asked her to correct these but cant be sure this will happen unless I request specifically this particular document which will cost more money. Feels like I am banging my head against a wall sometimes.

releasethemagic profile image
releasethemagic

Under the Data Protection Act you have a right to a copy of records held on computer for a maximum fee if £10. Under the Freedom of Infirmation Act you have a right to a copy of all the records held about you on computer or in paper files for a maximum fee of up to £50. Each GP or hospital can charge you the fee, so if you have records at a number of hospitals, it can get expensive.

Wrote to surgery to ask for copies of notes.surgery rang me today but phone playing up and Sam e when I rang them-ringing but no answer.when did get thru they said letter sent out,what's the betting its a refusal. If it is then contact health watch who said any problem with new go contact them.will find out tomorrow.when get lettet

letter received and taking money in today.my dog woke me to go in the garden and now I cant sleep fro stomach pain and distension.

got my records today and just as i thought contained loads of stuff not mentioned in consutations and words like "worried about" "feels she has " "wants" (referrals /scans/bloods-which i have NEVER asked for) "convinced" when in most cases I just "asked about" and I don't "feel I have " I know so.slightly confusing to read because everything repeated and several things under one date ie symptoms.dr's comments,plan of action and diagnosis .so many contradictory comments and everything put down to fibro and "bloating" when my abdominal distention and pelvic pain has always been persistent,not coming an going as with "bloating".my weight was in dec 2011 according to my notes 14 stone 2lbs with a recommended weight for my height of 11 stone 3 . I was 11,5 stone up until oct 2011.he comments on things like "she cant accept she is obese" well I am not as the only reason my weight has gone up is mostly abdominal distention.I do have some fat around my middle which maybe an age thing but nowhere near the amount of weight i have gained. an obese person would be obese all over and I have thin arms and "normal" legs and hips .they've never accepted that i have nt eaten cakes etc since 2007.

as i thought no mention of seeing a GYNAE before 2011(they claimed i saw him in 2009)and no mention of his comments to me and they claim everything to be anxiety which is just another assumption-anger yes at having being dismissed etc so many times .

have hardly eaten today.couldnt face breakfast -tried to eat cereal -not able to so dog had "oatibix " for her breakfast.not hungry for rest of day and tightness in abdomen much worse (and more swollen) too tho had soup at lunchtime and didn't know what to eat for dinner so just had cereal.

meeting with healthwatch tomorrow to discuss issues and to inform her of my experience so far of new GP.she s allowed 90 minutes.taking my notes to show her and anything else i think necessary.

bantam12 profile image
bantam12 in reply to

The phrases you have quoted from your notes seem perfectly reasonable, the GP can't write word for word notes.

Remember that your dispute with what is written in your notes cannot be proved either way as it is your word against the GP's as to what was actually said.

Is it really worth your precious energy pursuing something that is unlikely to help your situation, what is done is done, move on and try to work with your new GP.

Good luck and I wish you better soon.

disagree not when they are untrue ,any scans referrals are at gp ' s discretion,.i have kept my own record of every consultation.the practice manager admitted the breakdown is on his part. and have no right to label me as obese when they know it is my distended abdomen. if a case went to court both sides would be acknowledged and heard .I have written evidence.

it is as the gp I have now will base anything on what is recorded when its not correct.so far she has claimed she asked for stool tests when she most definitely did not -never gave me a sample bottle and I would have done one if she requested it.

when I saw her for "cold left foot" said "I cant see anything"-story of my life -cant see pain and sensations.googled it and it came up with diabetes as a cause.

they have to work with me too and making out they said /asked for something when didn't is not going to restore any faith/trust in them .i ve been labeled with a tarred brush on gp's dismissal non acceptance etc.

and so far on three occasions never given me reason to trust and have faith in her.

bantam12 profile image
bantam12

But unless there was a witness to what was said/heard it is one word against another, how can it be proved either way.

I just think you are causing yourself more unnecessary angst.

there was no witness to see him record what he did .i have no reason to lie or concoct stories whereas the PM there did.i am not alone.several other members have had the same problem and wish they d taken a tape recording of their consultations.

I have my last 7 years GP notes. Lab results and and consultants letters. Got them last year when i saw asked for them with no charge albeit i believe there should have been. Went through them and did my own analysis of symptoms as i believe i have had fibro since work related stress ilness in 2008 and it is obvious that that was the trigger for the start of symptoms culminating in full blown ilness in December 2013 which i am still very much struggling to manage to the point work want me to retire on ill health due to multiple absences. I have been able to produce a timeline for doctor of symptoms (obvious to anyone who has the time to view all visits that it sas fibro) and have given it to occupational health. Occupational health have told me that fibro/cfs is not permanent and i will fully recover. He also said that i was not a cardiac case when i told him about my referral for heart mri after chest pains. Glad he can tell that by looking at me but thats another story...

PS I also live in Scotland. My notes were almost a true reflection of what was discussed albeit v brief. Sounds Jan, your doctor is has a similar attitude to my Occupational Health Doctor... Move to someone else! X

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