my dad has died - are the doctors hiding something?

bethany1994

Thank you all so much for your help! - I genuinely hope the notes show the Drs did offer testing and support, we’ve made it very clear to the surgery we are not intending to try ‘catch them out’ on anything - we simply want to know the treatment he had available to him and see the results of all his recent blood work (as suggested to us by the Dr who cared for my father in the hospital when he died).

Also my fathers last words to me when we found him in his house were ‘they said I was getting better’...now if that doesn’t just break your heart I don’t know what will. He was only 56
My mother and I were so kind and followed all protocols they asked yet we were met with nothing but aggression and rudeness - it just seems very unusual to act so nasty to a family who are grieving. I know many people have accessed their deceased relatives records for the same reason - I just don’t see why we are any different! Maybe it’s simply just a case that we are dealing with uncompassionate and unsympathetic people, we shall try your suggestions and try another service to go through, much appreciated  

SevenOfNine

Just go here Bethany  https://pcse.england.nhs.uk/services/medical-records/accessing-medical-records/  I had 5 years of notes (the date criteria I asked for) within a month & about 4 emails along the way (as they kept me informed), the first asked if I was comfortable with using e-mail, I'd written initially with the documents they requested & gave my email address, so that was fine with me. The actual paperwork came via post though, opened & read with some trepidation, but it did answer some of my worries, & frankly, I no longer felt quite so murderous towards my loved ones GP.

I hope you get the info & answers you need, let the attitude of the GPs staff go over your head, you'll get what you need from PCSE, probably a more appropriate place to get it, one step removed from the GP practice. I wouldn't involve other external organisations at this point, you don't yet know if you have a 'medical treatment shortcomings' battle to fight.

Marcon

bethany1994 said:

Thank you all so much for your help! - I genuinely hope the notes show the Drs did offer testing and support, we’ve made it very clear to the surgery we are not intending to try ‘catch them out’ on anything - we simply want to know the treatment he had available to him and see the results of all his recent blood work (as suggested to us by the Dr who cared for my father in the hospital when he died).

But isn't 'catching them out' exactly what you believe you will be doing, judging by the numerous criticisms in your first post? You - and others on this thread - seem to have jumped very swiftly to judgement, which is unsurprising but not necessarily helpful to anyone, least of all you and your mother. Grief, shock, guilt, bewilderment - they will all be colouring your thinking; they always do when someone dies, especially if the death is sudden and unexpected. 

What will you do with the information, especially if you find the notes don't show what you want them to show? And what if you learn something which, as the surgery has already told you, your father would probably have preferred you not to see? You can never 'unknow' something once you've been told it. So much of what you have said seems to be based on what your father told you - and anyone who drinks what could be considered as more than good for them isn't always the most reliable in terms of what they say or remember being told.

Losing a parent at any age is tough; losing your dad when he was only 56 is especially grim. But before you rush to investigate, please think hard about whether you can live with what you might uncover. You can't change what has happened to your dad, or bring him back (however much you'd love to be able to do just that - don't we all, when faced with the loss of a loved one). Whatever you find is unlikely in the extreme to impact on other patients of the practice. You are looking for closure, but remembering your dad as you knew and loved him might be an option worth pondering before doing anything further.

Manxman_in_exile

I'm sorry for your loss.

I'm a retired NHS manager (no experience of working with GPs though) and I'd have thought that your father's personal representative (his executor if he left a will or whoever has applied to administer his estate if he died intestate) would be entitled to see your father's medical records in exactly the same way that your father could have asked for them when he was alive.

I can see no legitimate justification at all for your father's GP to refuse to allow access to his records.  I'm amazed that they are refusing on the grounds that the contents might distress you.  So long as it is your father's executor (or the administrator of his estate if he died without a will) who is asking for the records, I can't see how the GP can refuse.

I haven't read any of the links above (but see edits added at foot of this post) so I can't say whether you need to follow a particular process or not, but I would simply write to the practice manager of your father's surgery explaining that you (or whoever it is) are the executor (or administrator) of the estate of the late xxxx YYYYYYYY and that you want to see a copy of all his medical records.  I'd leave it at that and see what response you get from the practice manager.  If it's not a satisfactory one, you need to consider what to do next.  Normally I'd say make a formal complaint to the GP practice and follow that up with your local Clinical Commissioning Group too, but a former colleague recently suggested to me that complaining about a GP practice was more complicated than that now.  I'll try to find out what you should do. (see my next post)

Of course, what you discover might be distressing in that you might find out that things were not as your father actually told you and he was concealing things from you.   But obviously that's a risk you need to take to find out what you think you need to know.

I'd just add a couple of other points which may reassure you.  Individuals will respond in many different ways to any particular level of chronic alcohol consumption.  Some people can drink at ridiculously high levels for several decades with little or no ill effect.  (Not that I would recommend that).  Other people can drink relatively moderately and suffer liver failure after a relatively short time.  The fact your father died in the circumstances which he did does not necessarily mean that his doctors should have intervened earlier or more effectively.

Similarly, many of the blood tests ordered by doctors to determine liver function can be a bit iffy in terms of reliability.  And it's certainly the case that somebody with a chronic alcohol problem can produce OK liver function tests for years before the tests show any impairment - and by then it may be too late.  One of the most reliable ways of assessing liver damage is by having a fibroscan done.  You probably need to check his records to see if that was done.

EDIT:  I know that somebdy has mentioned PALS.  There's nothing wrong with contacting them but I would not expect them to be of any help here.  They can be useful in helping patients and family to negotiate the healthcare and hospital maze, but they are little more than volunteers.  Unfortunately many hospitals these days direct initial complaints to PALS.  In my view that is a diversionary tactic and a waste of time.

2nd edit:  The link posted twice by SevenofNine explains how to ask for medical records.  The earlier link posted by GN2020 to the Kingsly Napley site explains about personal representatives applying for records of a deceased person.

Manxman_in_exile

Hmmmm.  OK. 

If you have a complaint against a GP practice the way to do it these days is outlined here:  How_to_raise_concerns_about_a_general_practice_0.pdf (ombudsman.org.uk)   

It would appear that it is not necessary to raise a complaint with the practice itself, and that the local Clinical Commisioning Group no longer plays a part in the complaints process.

You can EITHER make a formal complaint to the practice itself, OR make a complaint direct to NHS England.  If you get no satisfaction from either of those, you can complain direct to the Health Services Ombudsman.

So, if the practice does not respond to a letter from your father's executor/administrator requesting his medical records, that's how you complain.  (It would not surprise me at all if the practice is totally unaware that you can - if you want - make an initial complaint direct to NHS England and not to them!)

Manxman_in_exile

Marcon said:

bethany1994 said:

Thank you all so much for your help! - I genuinely hope the notes show the Drs did offer testing and support, we’ve made it very clear to the surgery we are not intending to try ‘catch them out’ on anything - we simply want to know the treatment he had available to him and see the results of all his recent blood work (as suggested to us by the Dr who cared for my father in the hospital when he died).

But isn't 'catching them out' exactly what you believe you will be doing, judging by the numerous criticisms in your first post? ...
... are looking for closure, but remembering your dad as you knew and loved him might be an option worth pondering before doing anything further.

Marcon - I think the point is that the father's GP simply cannot refuse to disclose medical records to the deceased's personal representative.

However, I agree 100% with you that getting access to the records might open up a whole new can of worms and be very distressing for the OP.  But if they decide they do want to know then they are entitled to find out - assuming the OP or their mother is the executor or personal rep.

Or they may simply find it was "one of those things" and that the GPs did everything properly and by the book.

Personally, if I were the OP, I'd want to know.

Marcon

Manxman_in_exile said:

Marcon said:

bethany1994 said:

Thank you all so much for your help! - I genuinely hope the notes show the Drs did offer testing and support, we’ve made it very clear to the surgery we are not intending to try ‘catch them out’ on anything - we simply want to know the treatment he had available to him and see the results of all his recent blood work (as suggested to us by the Dr who cared for my father in the hospital when he died).

But isn't 'catching them out' exactly what you believe you will be doing, judging by the numerous criticisms in your first post? ...
... are looking for closure, but remembering your dad as you knew and loved him might be an option worth pondering before doing anything further.

Marcon - I think the point is that the father's GP simply cannot refuse to disclose medical records to the deceased's personal representative.

However, I agree 100% with you that getting access to the records might open up a whole new can of worms and be very distressing for the OP.  But if they decide they do want to know then they are entitled to find out - assuming the OP or their mother is the executor or personal rep.

Or they may simply find it was "one of those things" and that the GPs did everything properly and by the book.

Personally, if I were the OP, I'd want to know.

I didn't suggest access could be refused, but given that the records will normally be retained for 10 years (assuming the death was in England), there's no immediate rush in terms of fearing they will be prematurely destroyed.

Full details of process here: https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/can-i-access-the-medical-records-health-records-of-someone-who-has-died/ (again, I'm making the assumption this was in England - and apologies if one of the links already quoted takes you to the same destination).

Flugelhorn

the notes have to be redacted to exclude any third party references 

maxheadroom

Two principles
1. Even after death patients are entitled to confidentiality.

2 After a patient has died the records no longer 'belong' to the GP they 'belong' to NHS england.  Hence the process above to obtain access to them, the GP cannot simply give you access, to do so could mean they vould find themselves on the wrong side of a regulator.

You dont say how recent the death was.   For a sudden death it should have been referred to the coroner,  often it wont result in an inquest but if the family member a coroners officer speaks to has concerns an inquest may be ordered, did this happen.

The new medical examiner system will also mean deaths are scrutinised by an uninvolved clinician, and if they have concerns can refer the case to the coroner.

If it has passed both of these hurdles it is likely that this just sadly represents the natural progression of alcoholic liver disease (kidney failure is part of this) in a person who continues to consume alcohol. 

By all means request these but as above they may open a new van of worms

Flugelhorn

MalMonroe said:

Flugelhorn said:

I am really sorry to hear of your loss. 
Just to mention - the blood test for blood pressure medication is likely to be to check renal function and wouldn't routinely pick up liver disease. 
Also (and I have come across this on countless occasions) you don't actually know what went on at the doctors when he went on his own, your dad may have opted to tell you the minimum, maybe he was tested / monitored / counselled - who knows. You definitely need  to see the notes and have someone  go through the notes with you - have you contacted the practice manager? (or try the link above that @SevenOfNine has posted. )

I'm on blood pressure medication and can confirm that my blood is tested annually for liver function as well as renal function. So this kind of test would or should definitely pick up any anomalies in liver function. 

Usual requirement is for eGFR and creatinine only for most , they often do liver function if they are taking statins along with the antihypertensives (which many do )