obtaining medical records for a parent

[sick.as.a.chip]

Hi I hope I am in the right place. I have been a member of the site for quite a while now and have had some really excellent support and advise over in the legal issues section. I’m now taking on another fight but with a much more personal side. My mum passed away very suddenly in March of this year. Just went to bed fine and never woke up. There was a post mortem done but no inquest as they determined that it was natural causes (Chronic Ischaemic Heart Disease and Coronary artery Atheroma)My issue is that my mum was previously in good health but had been diagnosed with an unrelated tumour and had treatment for that in January of this year. Part of that treatment included a Pre-Op assessment where they discovered a possible irregular heartbeat (She had never had any other problems with her heart prior to this). The surgery went ahead as planned and an Eccocardiogram was requested.The GP received something that indicated when the results of the Ecco came back that my mum needed to be seen by a Cardiologist. The GP actually telephoned my mum and told her this on the telephone and said she would be placed on “the shortest list” and the appointment came through to see the Cardiologist 5 weeks later. She died 3 weeks later (2 weeks before she got the results of the Ecco).I have looked around and decided that my first point of contact should be the Cardiologist so I rang and spoke to the secretary who said all they had on there system was the cancelled appointment for my mum, she directed me back to her GP.I went to see the GP and was told that her records have gone back to the health authority. She was quite contradictory when I spoke to her as she said she had seen the results of the Ecco and then said she had not. She said when she found out about my mum needing to be seen on the shortest list she decided to act promptly and call her directly rather than make an appointment to see the GP then wait and make another appointment to see the Cardiologist so she just rang and advised my mum she needed to be seen and that she would arrange for an appointment to be sent out. I believe the GP acted promptly. I do not however believe my mum was seen soon enough. Something very wrong obviously showed up on this Ecco and it was enough to warrant a call from the GP but then there was the delay in getting the appointment with the Cardiologist which my mum never lived to see.I am now a 31 year old orphan with small children who will never remember there amazing grandmother and I cant let that slide. My dad was misdiagnosed and died within 6 weeks of recieveng the correct diagnosis and at the time my mum never fought it. I cant let my mum down she deserved better than she got.I got the details for our local PALS office who are sending me the forms for the hospital records (where the ECCO was done) and I have had to submit a request to the GP for those records which I have done under the Access to Health Records Act. The practice manager is not very clued up however as I had to advise him that although I did not have power of attorney for my mum I am a named executor in her will and I gave him a copy of that to substantiate my request.Any advise would be great as I know some of you are not fans of PALS Sorry for such a long post!!

[nolegion]

Commiserations on your loss, S.a.a.c.

 

Copy medical records for the deceased are obtainable by written application under the Access to Health Records Act 1990 by:

 

"… the patient’s personal representative and any person who may have a claim arising out of the patient’s death…"

 

[unless]

 

"…the record includes a note, made at the patient’srequest, that [the patient] did not wish access to be given on such an application…"

 

(Passers-by may care to note that the (amended) Act referred to above now only deals with the medical records of patients who have died. The Data Protection Act 1998 deals with those of the living.)

[sick.as.a.chip]

Thank you no legion. I'm waiting for a reply from the GP practice after my request under the act but the practice manager assumed I needed power of attorney which I don't and you have confirmed thank you.

If my mum had never had anything done with her heart it may not be so hard to accept but something prompted her GP to pick up the telephone and I'm determined to find out what that was as she obviously thought it was serious enough to call.

The support is appreciated.

[bhall]

I am very sorry to hear of your loss.

 

If I can add to the advice you have already received. If the GP practice either refuses or delays matters further, inform the practice that you will apply for a Court Order pursuant to s.8 of the Access to Health Records Act 1990 to make the comply with your request.

 

8 Applications to the court.

 

(1)Subject to subsection (2) below, where the court is satisfied, on an application made by the person concerned within such period as may be prescribed by rules of court, that the holder of a health record has failed to comply with any requirement of this Act, the court may order the holder to comply with that requirement.

 

Once you are ready to proceed with making a complaint, I would personally avoid PALS - Through experience they appear to be little more than a buffer zone between people wanting to complain and the actual complaints department. If you look at the figures released by various Trust's you will see that whilst over 100 may complain to PALS, only 1 or 2 of them get through to the complaints department. - Contrary to the applicable legislation the NHS has a informal / formal complaints policy that doesn't really make sense.

 

My advice would be to identify the email addresses of the board of the trust - names should be available from the hospital website. Leap frog the complaints department and go straight for the board, especially the chief executive and keep pushing hard, until you get answers to all of your concerns

[sick.as.a.chip]

Thank you for you advise. I'm expecting a call from the surgery on Tuesday or Wednesday with an update as he said it was an 'unusual request'

From what I have written and obviously I understand I have a very biased view do you think there is something TO complain about??

Also sorry to be a pain but the practice manager said they may not show me everything and a GP will look over the notes first and (I can't remember his words used) but may remove things that could cause embarrassment to my mum? Are they allowed to do that?

Thanks in advance!

[fletch70]

I am sorry for your loss. My Dad died suddenly of the same issue nearly 3 years ago. He had seen a several consultants about various issues we had no warning.

My wife died in her chair again of similar problems. I suspect that you will find nothing in the notes to blame anyone but if seeing those notes help you then go for it. If you find something then take some specialist advice.

[bhall]

Hello, I have no medical knowledge - though I have complained to my local trust about the death of a relative.

 

For me you have some questions that you need answered -

 

In relation to the irregular heart beat -

 

Were they correct to still proceed straight to surgery, despite this discovery.

 

Following this discovery was any further investigation (scans tests etc) carried out

 

Should some form of treatment have been given for the condition

 

Etc etc

 

From my experience unless you are lucky and your Trust is helpful, you will only be able to get the answers you want as a result of a complaint. Ask the Trust to review and assess the treatment provided (the outcome will be biased towards the trust but may provide you with some answers for your peace of mind)

 

You can check somethings for yourself - Is there any NICE guidance for possibility of an irregular heartbeat etc.

 

When my relative died, once I had obtained his medical records, I found that something had been overlooked in the records by the Doctors that treated,

 

As a grieving relative I think you have the right for peace of mind.

[Sali]

I too am sorry for your loss.

 

The advice already offered is excellent. I would also ask for a copy of the post-mortem report, if you haven't already, from the coroner.

 

And I certainly don't think you are being in anyway vexatious in your determination to get to the truth of your mum's death.

 

Good luck.

[assisted blonde]

I too am sorry for your loss and can see you need answers> I would reiterate though that although you may get some you will never really know but the thing to think about is was your mum happy with her treatment? and will bringing a claim change anything really? medical negligence is very hard to show and dosent always tell us what we want, it may be better to sit on this for a bit longer as its still very new.

[sick.as.a.chip]

I am sorry for your loss. My Dad died suddenly of the same issue nearly 3 years ago. He had seen a several consultants about various issues we had no warning.

My wife died in her chair again of similar problems. I suspect that you will find nothing in the notes to blame anyone but if seeing those notes help you then go for it. If you find something then take some specialist advice.

 

Thank you so much. She was my world so I.ve no idea how you have got through your troubles. X

[sick.as.a.chip]

Hello, I have no medical knowledge - though I have complained to my local trust about the death of a relative.

 

For me you have some questions that you need answered -

 

In relation to the irregular heart beat -

 

Were they correct to still proceed straight to surgery, despite this discovery.

 

Following this discovery was any further investigation (scans tests etc) carried out

 

Should some form of treatment have been given for the condition

 

Etc etc

 

From my experience unless you are lucky and your Trust is helpful, you will only be able to get the answers you want as a result of a complaint. Ask the Trust to review and assess the treatment provided (the outcome will be biased towards the trust but may provide you with some answers for your peace of mind)

 

You can check somethings for yourself - Is there any NICE guidance for possibility of an irregular heartbeat etc.

 

When my relative died, once I had obtained his medical records, I found that something had been overlooked in the records by the Doctors that treated,

 

As a grieving relative I think you have the right for peace of mind.

 

Thank you. I think I just need to know and if I don't find anything out at least I can tell my girls I tried. My mum was a blood donor and gave every 3 months without fail, I know this means nothing but she gave to the NHS and I,d hate to think they had let her down x

[sick.as.a.chip]

I too am sorry for your loss.

 

The advice already offered is excellent. I would also ask for a copy of the post-mortem report, if you haven't already, from the coroner.

 

And I certainly don't think you are being in anyway vexatious in your determination to get to the truth of your mum's death.

 

Good luck.

 

Thank you for that. I spoke to the coroner assistant and he said 'there is no repot as such' as there was no inquest. If I wanted to know any more then her GP would need to speak to the coroner. I do find that a little odd and I would have thought there would have been something but by the attitude of the GP so far I'm not expecting them to speak to the coroner. I'm still waiting for a call back from the GP practice manager which should be today. If not I have a half day off work tomorrow I may well just turn up to speak to him!!

[sick.as.a.chip]

I too am sorry for your loss and can see you need answers> I would reiterate though that although you may get some you will never really know but the thing to think about is was your mum happy with her treatment? and will bringing a claim change anything really? medical negligence is very hard to show and dosent always tell us what we want, it may be better to sit on this for a bit longer as its still very new.

 

Hi, thank you for your input. I feel strong enough to go ahead with this where ever it may take me. The aim is to get answers without the need for legal intervention as I am the youngest of 3. My eldest sibling is hoping 'this gives you closure' which to me means he's accepted she may have been let down and the middle sibling is supportive so far but I've not mentioned anything legal yet. I think I know the outcome will be the trusts involved will tell me they saw something but not conclusive enough to warrant immediate treatment. That her heart could have failed at any time etc etc etc but I really do just want to know anything they can tell me. My girls are so little and I want to be strong for them and be able to tell them that I tried to get answers for them as they have no maternal grandparents left and they are still so young. My mum gave me so much I feel I need to fight for any information i can get for her and my family x

[sick.as.a.chip]

My god I'm foaming! Practice manager has just called back. Unless I put in writing I want to persue a claim or I get a court order I won't beaable to get my mum's records!!!!

[Sali]

Then the GP is absolutely wrong. I know because I have been in your position. Refer back to Nolegion's post. You are entitled to the data under the Access to Health Records Act 1990. Print off the relevant section if necessary and stick it under the GP's nose. Oh, the arrogance of some medics!

[sick.as.a.chip]

Thank you. I have tried pals again to see if they can light a fire under the practice manager. Do you happen to know where I would get a court order from? My local county court? How do I go about it? I'd like to get the process started as soon as I can. He just kept saying if I wanted to issue a claim against the hospital!!

[sick.as.a.chip]

No luck with pals. GP's are standing firm that they at least want a letter from me saying I am considering taking legal action!!!

[nolegion]

"The personal representative is the only person who has an unqualified right of access to a deceased patient’s record and need give no reason for applying for access to a record. Individuals other than the personal representative have a legal right of access under the Act only where they can establish a claim arising from a patient’s death."

 

See paragraph numbered 38 on page 14 of one the Department of Health's own guidance documents:-

 

http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113206.pdf

[sick.as.a.chip]

Thank you! I had the guidance printed off and have rang the practice manager back. He said they were happy but the legal department said the guidance was too vague!!! I read him the relevant sections and advised that I had already submitted a formal request under the act and I expect a reply in the 40 day's.

He said he thought it was clear but I said I'd put it in writing and give him it 2morrow to run past his legal department!!

[Sali]

You could try contacting the Information Commissioners Office who are supposed to provide advice and enforce the Data Protection Act.

 

I still don't understand how the medics can be sure of the cause of your mum's death without a post-mortem. It wouldn't necessarily follow that there would be an inquest, but there should be a PM report.

[bhall]

No luck with pals. GP's are standing firm that they at least want a letter from me saying I am considering taking legal action!!!

 

If you do that, make sure you are very clear that legal action relates to obtaining the medical records and not in relation to the treatment provided etc. Some NHS bodies, will use confirmation of legal action as away of not having to deal with a complaint. I know it sounds crazy but you could not make it up

[sick.as.a.chip]

Sali, there was a post mortem but no inquest. When I rang the coronor's assistant I was told that there was no report as such. (I wanted to know if the GP got a copy of the report, I think at the time I wanted to know if they knew when she dies as we just got a call to say she could not be woken up and had no idae when she died) I thought it a bit odd at the time as the coronor had possesion on my mums body yet there was no report? We were told at the time that if when the coronor examined my mums body that if the cause of death could be seen by the naked eye (his words) then there would be no need for an inquest?I hand delivered the letter to the GP with the Department of health guidance in and a strongly worded covering letter and got a call the next day from the practice manager to say that was all he required and he would order the records and be in touch to make an appointment to see him to go through them when they arrived. So not wanting to be hopefull but I'll wait and see what he comes up with. I've completed and e-mailed the forms for the hospital records and got those off last week so waiting for a reply from them. I know that I have to wait a maximum of 40 days so not much is going to happen between now and then!Thanks for the support everyone its much appreciated!

[sick.as.a.chip]

If you do that, make sure you are very clear that legal action relates to obtaining the medical records and not in relation to the treatment provided etc. Some NHS bodies, will use confirmation of legal action as away of not having to deal with a complaint. I know it sounds crazy but you could not make it up

 

Thanks for that its interesting to know.............. It's all so mad, I've never come across someting as stupid as this in my life!

[fletch70]

When my wife died i will admit the assistant coroner was rather curt with me. However I emailed the coroner and was given a copy of the report. I do know that they also did a non invasive pm but so far as i know a pm is only done when a Dr is not prepared to sign the death certificate.

When i got the pm report i went to see my gp who explained it all and reassured me that she did not suffer and that the drugs in her system were not the cause of death. The coroner had suggested suicide which i knew could not be true.

[sick.as.a.chip]

wow, thats terrible that they could be curt with you at a time like that!!! how awfull for you. The man I spoke to was really lovely and tried his best to explain everything to me which was much appreciated. I believe the PM was required as my mum died in her sleep and cause of death was not externally obvious if that makes sence? I will have a scoot round now and see if I can find an e-mail address and give that a try. I was not sure if I should be requesting anything for the post mortem as that was done at another hospital to the one I've currently got the request for records in with and as they point out there is no MAX fee for deceased's records!!