my dad has died - are the doctors hiding something?

bethany1994

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.

I completely understand why it may seem like we are trying to catch them out but that is not the case. We were advised by the Dr who oversaw my dads case in the hospital before he died to investigate further. Simply because we were told that many of the physical symptoms my dad had did not happen overnight. The Dr said these will have been visibly prominent for at least the last 3 months of his life (the severe weight loss, speech impairment, skin colour, sunken eye holes, limited movement of his eyeballs ect) they said if my dad has in fact gone to the Drs and they sent him away looking like that, then they have not acted in the patients best interest. They may have messed up, but they probably didn't - we won't know unless we see the records. Now I don't know about you but I won't be able to live the rest of my life not knowing the medical care he did or did not receive. 

 I don't for one second believe the GP's are to blame for my dads death, people die of lots of things all the time, it's just life. Our main wish it to know if he was offered appropriate testing when they knew his drinking was a risk factor. If they gave my dad appropriate support then they should happily release that information? 

Trust me, there is nothing more distressing I could ever find out. Seeing my dad being carried out the house - weighing less than 7 stone and completely emaciated - I could already smell death before he passed me by. Even if the Drs missed opportunities, we would never go down the legal route, there's no point, it isn't about money and suing, it's about our family knowing the truth about my father's health care the past few years.  

Also I know it's hard to imagine, but my dad would never keep anything from my mum and I, from the doctors he would but not from us. When he was suffering from depression he was so honest and open about his true feelings, he even told me he wanted to kill himself and asked me for help. My dad has been through some mortifying ordeals and has never shied away from sharing these with me. I know there was nothing he could possibly keep from us. But to say 'they said i was getting better' as his DYING WORDS ??? that would imply he did in fact see a Dr recently. But for some reason they won't communicate with us. Thank you for your view, though. 

   

Manxman_in_exile

I'm not sure that telling the OP that their father's medical records need to be redacted for references to third parties or that they belong to NHS England rather than the GP practice are particularly helpful or relevant in the OP's situation.  If we are to take at value what the OP has posted (and why wouldn't we?) they and/or their mother and/or their father's PR has asked for access to the father's records and the GP is simply saying "No - you can't have them because they will upset you and your father wouldn't want you to see them".  This is what the OP has said:

bethany1994 said:

...
Now my dad has passed away, my mother and I want to ensure that my dad was offered all the right tests and advice from the GP surgery because it seems like he was not. We simply want to know if this could have been caught sooner. We applied to request his medical forms for this reason - yet the GP surgery denied our request because they don't feel like MY DAD would want us to see them? (those were their exact words) How can they come to this conclusion when the GP dealing with our request had never met my dad? The truth is my dad was open and honest with my mum and I, he always went to the Drs if he felt unwell and he did multiple times over the years (these issues were small things like IBS ect)

The Dr also said over the phone that my dad had not been to the surgery in over a year - which would mean my dad 'lied' about the appointments he had near his death. They then back tracked and said we couldn't see the medical records  because it would be too distressing for us and as he was a heavy drinker is made it a sensitive request. However, we made a personal visit to my dads GP surgery and spoke to this very same Dr face-to-face before this phone call and he said they were not aware of any drinking issues with my dad and none showed on his system. So why now, all of a sudden, is his 'drinking' a reason to withhold notes - they admitted they never saw my dad for them reasons? Also if they are saying my father never visited the GP a year before his death - where would the distressing information come from? If there's no notes to see how can they be distressing?

Also they are using my dads drinking as a reason for us not being able to see his records when they said they had no idea of my dads alcohol misuse until my mother told them 3 days ago. In your opinion, if this was happening in your family, would you think this is suspicious? Is there any other avenue we could explore to help us see the records?
...

Taking that at face value I think there is a legitimate question to ask as to why the GP practice simply hasn't explained to the OP the approriate procedure to follow in order to access their father's records.  I don't understand their reticence or difficulty in doing so.  In fact the second reply/third post in this thread carried a link explaining how to get the records of a deceased person and who can request them, and GN2020 posted that reply within 40 minutes of the opening post.  Why couldn't the GP practice have been that helpful?  They could even have explained that the records need to be checked for references to third parties before being released, so there might be some delay.  To be as unhelpful and obstructive as the OP is saying they have been is unacceptable.

To reiterate, if the request for the records has come from somebody who is entitled to have them (and who those people are has been covered in previous posts and links) then it is not the place of GPs to reject that request.  They either comply or direct the person requesting the records to the correct body.  All the OP needs to do is to ensure the request comes (or came) from their father's executor or other personal representative.  

Whether reading the records was not something their father would have wanted or whether the records might be upsetting is irrelevant.  The OP appears to accept that, and the GPs should not be giving those as reasons for the records not being released (by whomever has to release them).

Marcon

maxheadroom said:

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

In the original post - 28 April 2021.

SevenOfNine

For all the bickering undertaken now from several lengthy responses it doesn't change the fact that the OP can request the notes from PCSE. There are stipulations, I think the death cert was required but I can't recall for certain & it's not paperwork I want to look through again to check.  OP may hit more of a brick wall if she or her mum don't somehow "qualify" to have the records, but she'll find out what that criteria is on the PCSE site where the application form is.

I instigated this at the beginning of July last year, & received exactly what I'd asked for at the end of that month (faster than the 40 days PCSE indicate), so I can speak from actual application experience unless the process has changed in the last 10 months.

OP has lost her dad very recently, she wants to see medical records, yes, absolutely the GP practice definitely should have been more helpful, but now isn't the time to expend energy picking arguments & lodging complaints. 

Edit: I've just had a quick look at outgoing correspondence on my PC. I sent the Grant (Letters of Administration to be precise, there was no Will), copy of passport & a utility bill to confirm my address. Included in the application I put the name, address, date of birth & death, NHS number, GP practice address.

Savvy_Sue

bethany1994 said:  

Also I know it's hard to imagine, but my dad would never keep anything from my mum and I, from the doctors he would but not from us.  

I was struck by this. If your father might not have been honest with his doctors, their ability to treat him effectively may have been compromised. 

But I am sorry for your loss. 

bethany1994

Savvy_Sue said:

bethany1994 said:  

Also I know it's hard to imagine, but my dad would never keep anything from my mum and I, from the doctors he would but not from us.  

I was struck by this. If your father might not have been honest with his doctors, their ability to treat him effectively may have been compromised. 

But I am sorry for your loss. 

This was in reference to him talking about his mental health with Drs. He wouldn’t speak about his feelings with anyone he wasn’t close to - he’d happily talk about his physical pain because it’s a completely different thing.

thanks for your condolences 

fred246

It sounds like he died from drinking too much alcohol day after day for years. Most people that end up in that situation are told on multiple occasions that they will die if they carry on drinking like that. It is possible that he was drinking heavily without any medical care being sought. I don't know how much you can blame other people.

bethany1994

fred246 said:

It sounds like he died from drinking too much alcohol day after day for years. Most people that end up in that situation are told on multiple occasions that they will die if they carry on drinking like that. It is possible that he was drinking heavily without any medical care being sought. I don't know how much you can blame other people.

Why are you even commenting on here - I asked for advice and yours in an unsolicited opinion. I know my dad - you do not. Im tired of trying to justify to people like you why the Drs have been inappropriate. I’m not saying THEY HAVEN’T GIVEN HIM MEDICAL CARE AND SUPPORT - BUT I CAN’T SAY THEY HAVE UNTIL I HAVE SEEN THE EVIDENCE. end of. 

bethany1994

I just want to clarify - if this was you in this position and your wife/husband/mother/father/daughters/son died, you had legal probate making you executor of the estate, you have the legal right to medical records. End of. When the GP’s and Practice Manager then try telling you that you don’t have the right, when every source of information says you do, then obviously you aren’t going to be happy. They can direct you to other services to access them, you can fill in other forms, but they choose to not tell you that information - is not doing their job properly. The way they have acted is literally against the rules laid out for this. Is that too hard for you people to grasp? There’s a legitimate question to be asked.

Thank you to those of you who have been respectful and offered HELPFUL advice rather than just commenting for the sake of getting your opinion across on a matter you obviously had no helpful advice on. Wish everyone the best, will not be commenting further. 

bethany1994

Forgot to add the most important part before I depart! My mother managed to get help from Primary Care England - who said they will release the notes once our forms are received, we were told we meet all the criteria so a big thank you to the people who suggested the links and websites, they were very helpful, thank you!