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my dad has died - are the doctors hiding something?
bethany1994
Posts: 7 Forumite
Hello - no real category for this issue however I'm struggling to find an active forum online that is of use and this one seems popular. I'll explain the entire situation as I would like to know your opinions/advice.
My mother and I have requested my fathers medical records from his GP. My father died on the 28th April 2021 - from undiagnosed liver disease, caused by sustained alcohol use. My mother and father lived separately although they remained married and very close, as was I to my father. He collapsed at home alone and was unable to call for help so when we hadn't heard from him as usual for 2 days we went around to check on him. Due to the pandemic, we had only seen my father physically twice in the last 8/9 months but spoke on the phone 3-4 times a week. I suffer with chronic kidney disease and so my father would never agree to break any 'rules' to see me, he was keeping me safe by staying away. Unknown to any of us (my dad included) he had been slowly dying the past 12 months. The last 8 weeks of his life he told me he felt poorly, said his kidneys were in terrible pain but couldn't get through to the Drs (terrible phone line as I'm sure we all know!) My dad told me he had to resort to ringing 111 for help - they made him an appointment with his GP for the very next day. My dad explained to the Dr that he had been having blood in his stool, losing weight rapidly, had lost his appetite and had terrible pain around his kidneys. My dad told me that the Dr did a blood test and made a follow-up appointment for the next week to discuss if his symptoms had worsened. My dad returned to the Drs and was told his blood tests had come back as 'what we would expect from someone like you' - a strange thing to say in my opinion and he said no more on the matter. He prescribed my dad antibiotics for a suspected kidney infection - although my dad said the Dr never did a urine sample to confirm this - nor a stool sample to investigate the blood in his stool. The blood test that was carried out however would have shown my dad was in fact going into liver, heart AND kidney failure.
My dad never took a day off work during this period of illness, and when co-workers showed concern for his physical symptoms (the weight loss) my dad told them it was a kidney infection - so he truly believed the Drs diagnosis - as you would. My dad never received any treatment for being a heavy drinker because he never went to the Drs for that issue - my dad was not your typical heavy drinker, he just enjoyed a few pints and a glass of whiskey after work - he would never drink to oblivion and he remained successful in his career and other areas of his life. Drinking never took over his life but he was classed as a heavy drinker because he drank alcohol every night. But because my dad was only a leisurely/sociable drinker, his drinking habits were never seen as a concern. My dad went for regular blood pressure check-ups for his blood pressure medications and also received ONE blood test per year to monitor his medication amounts (other medications were for things such as acid-reflux).
In 2015, my father was hit with depression when his work became intensely pressured, he was close to his boss and they had worked together for over 30 years, my father was too nice, he refused to take time off work even if he was genuinely ill and he NEVER TOOK ANY OF HIS HOLIDAYS because he was afraid of the judgement from his co-workers (something he told me himself) and so one day my dad left a suicide note at work saying he couldn't cope with the stress anymore. Thankfully, we found my father in time and nothing bad happened from that, except his work didn't make any changes to support him and he carried on going every day since. His depression eventually improved. When my dad was located by police after his suicide note though he was required to see the GP (not at his usual GP surgery) before they let him return home, my mother went with him and told the Dr of my dads evening drinking habits - this Dr said he would be at risk of effects from alcohol if he sustained his drinking for many years and so my dad controlled his drinking considerably although still enjoyed a pint with his friends on the weekend. My dad always said over the years he found it odd that no Dr ever asked about his drinking habits or mental health again, although he never complained of this as my dad, like many, struggled to talk about deep feelings.
He died less than 24 hours after being taken to hospital - the cause of death, end stage liver disease. We were told he will have had liver disease for approximately 10 years prior to this and even though his drinking was considerably changed the damage had already been done - his liver will have deteriorated slowly over the last decade. The problem is my dad was never told he had liver disease despite his yearly blood test results will have shown a steady decline in his organ functions each time. This was not picked up on. My mother and I were always unhappy with the care my dad received from his GP, they never asked him any follow-up questions on his drinking habits or mental health issues during the 6 years after his suicide note. Although my dad recovered from depression, I have been told from the Dr caring for my dad at the hospital where he died, that when a GP knows a patient has suffered with any form alcohol misuse, they should ensure appropriate testing takes place over time to monitor the effects of the alcohol damage - yet my dad was never tested for anything other than being offered regular blood pressure appointments, which he always kept.
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?
We already explained to the Drs we only want to see the notes for our closure and to ensure my dad was monitored correctly, we aren't trying to blame them for his death we just want to know if they in fact saw the signs his organ function was deteriorating and didn't follow up with that. We were not aggressive in any way during our request yet they seem to be very passive aggressive to a grieving wife and daughter. I am posting this thread in other forums but haven't had response yet so apologies if this is not what you came here to find.
Thank you
My mother and I have requested my fathers medical records from his GP. My father died on the 28th April 2021 - from undiagnosed liver disease, caused by sustained alcohol use. My mother and father lived separately although they remained married and very close, as was I to my father. He collapsed at home alone and was unable to call for help so when we hadn't heard from him as usual for 2 days we went around to check on him. Due to the pandemic, we had only seen my father physically twice in the last 8/9 months but spoke on the phone 3-4 times a week. I suffer with chronic kidney disease and so my father would never agree to break any 'rules' to see me, he was keeping me safe by staying away. Unknown to any of us (my dad included) he had been slowly dying the past 12 months. The last 8 weeks of his life he told me he felt poorly, said his kidneys were in terrible pain but couldn't get through to the Drs (terrible phone line as I'm sure we all know!) My dad told me he had to resort to ringing 111 for help - they made him an appointment with his GP for the very next day. My dad explained to the Dr that he had been having blood in his stool, losing weight rapidly, had lost his appetite and had terrible pain around his kidneys. My dad told me that the Dr did a blood test and made a follow-up appointment for the next week to discuss if his symptoms had worsened. My dad returned to the Drs and was told his blood tests had come back as 'what we would expect from someone like you' - a strange thing to say in my opinion and he said no more on the matter. He prescribed my dad antibiotics for a suspected kidney infection - although my dad said the Dr never did a urine sample to confirm this - nor a stool sample to investigate the blood in his stool. The blood test that was carried out however would have shown my dad was in fact going into liver, heart AND kidney failure.
My dad never took a day off work during this period of illness, and when co-workers showed concern for his physical symptoms (the weight loss) my dad told them it was a kidney infection - so he truly believed the Drs diagnosis - as you would. My dad never received any treatment for being a heavy drinker because he never went to the Drs for that issue - my dad was not your typical heavy drinker, he just enjoyed a few pints and a glass of whiskey after work - he would never drink to oblivion and he remained successful in his career and other areas of his life. Drinking never took over his life but he was classed as a heavy drinker because he drank alcohol every night. But because my dad was only a leisurely/sociable drinker, his drinking habits were never seen as a concern. My dad went for regular blood pressure check-ups for his blood pressure medications and also received ONE blood test per year to monitor his medication amounts (other medications were for things such as acid-reflux).
In 2015, my father was hit with depression when his work became intensely pressured, he was close to his boss and they had worked together for over 30 years, my father was too nice, he refused to take time off work even if he was genuinely ill and he NEVER TOOK ANY OF HIS HOLIDAYS because he was afraid of the judgement from his co-workers (something he told me himself) and so one day my dad left a suicide note at work saying he couldn't cope with the stress anymore. Thankfully, we found my father in time and nothing bad happened from that, except his work didn't make any changes to support him and he carried on going every day since. His depression eventually improved. When my dad was located by police after his suicide note though he was required to see the GP (not at his usual GP surgery) before they let him return home, my mother went with him and told the Dr of my dads evening drinking habits - this Dr said he would be at risk of effects from alcohol if he sustained his drinking for many years and so my dad controlled his drinking considerably although still enjoyed a pint with his friends on the weekend. My dad always said over the years he found it odd that no Dr ever asked about his drinking habits or mental health again, although he never complained of this as my dad, like many, struggled to talk about deep feelings.
He died less than 24 hours after being taken to hospital - the cause of death, end stage liver disease. We were told he will have had liver disease for approximately 10 years prior to this and even though his drinking was considerably changed the damage had already been done - his liver will have deteriorated slowly over the last decade. The problem is my dad was never told he had liver disease despite his yearly blood test results will have shown a steady decline in his organ functions each time. This was not picked up on. My mother and I were always unhappy with the care my dad received from his GP, they never asked him any follow-up questions on his drinking habits or mental health issues during the 6 years after his suicide note. Although my dad recovered from depression, I have been told from the Dr caring for my dad at the hospital where he died, that when a GP knows a patient has suffered with any form alcohol misuse, they should ensure appropriate testing takes place over time to monitor the effects of the alcohol damage - yet my dad was never tested for anything other than being offered regular blood pressure appointments, which he always kept.
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?
We already explained to the Drs we only want to see the notes for our closure and to ensure my dad was monitored correctly, we aren't trying to blame them for his death we just want to know if they in fact saw the signs his organ function was deteriorating and didn't follow up with that. We were not aggressive in any way during our request yet they seem to be very passive aggressive to a grieving wife and daughter. I am posting this thread in other forums but haven't had response yet so apologies if this is not what you came here to find.
Thank you
0
Comments
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I would suggest you contact PALS, they can help you with this."You've been reading SOS when it's just your clock reading 5:05 "1
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I’m not sure how much help this website will be but there seems to be some decent info on there.I’m no expert at all but I had to reply as my heart went out to you. I lost my dad a year and a half ago very suddenly and I had so many questions around his death and how it happened, so I understand to some extent the need to have questions answered.I’m so sorry for your loss and I hope you can get the answers you need ❤️1
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I did this last year for a deceased family member to see the notes for the last 5 years of his life.
The GP practice (which is also the same as mine) was helpful & directed me to Primary Care Support England. https://pcse.england.nhs.uk/services/medical-records/accessing-medical-records/
There's a form to complete & supporting documents to send. They were very helpful keeping me informed of progress via email with the procedure explained. The notes duly arrived.
Seen it all, done it all, can't remember most of it.1 -
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. )2 -
Hi, I can see you’ve been offered good advice.... I just wanted to pass on my condolences, my father passed away the day before yours.
I hope you get the closure you need when you see the records.
Happy moneysaving all.1 -
I hope that you are able to get the answers you need. It's normal to have questions especially when it's unexpected.Lost my soulmate so life is empty.
I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
Diana Gabaldon, Outlander1 -
You might need some help to interpret the information you receive & it may be easier if you leave it a little while before looking at it, it can be painful.
I'm afraid you may be left with the thought......"if only" because whatever you see there it won't change things, you lost your dad. My condolences.Seen it all, done it all, can't remember most of it.1 -
Hi, I'm so sorry for your loss and also that your Dad suffered so much before he passed away. It does seem to me that the GPs have been negligent in his case. For a start, he was never offered any help with controlling his drinking by the sounds of it, he was just told to 'control it'. I have a relative with the same problem but she has no intention of controlling it and will probably die of alcoholism. People who drink too much alcohol are unable to 'control it' on demand.
I have been on high blood pressure and cholesterol reducing medication for quite a number of years and have to have annual blood tests, one of which is definitely an LFT (liver function test), contrary to what Flugelhorn has said above. If your Dad's liver function was not tested along with his renal function each year, that could also be classed as negligence - especially in someone who has a known alcohol addiction.
These links may be helpful - Citizens Advice : https://www.citizensadvice.org.uk/health/nhs-and-social-care-complaints/complaining-about-the-nhs/taking-your-complaint-against-the-nhs-to-court/clinical-negligence-in-the-nhs-taking-legal-action/
And the Care Quality Commission, the organisation set up to check medical services in the UK - https://www.cqc.org.uk/contact-us/how-complain/complain-about-gp-dentist-or-eye-care
They can help you to start finding out what exactly happened and why your Dad's GPs didn't seem to have any interest in him. Obviously it won't bring your Dad back but sometimes you just need to know. All the best to you and your Mum x
Please note - taken from the Forum Rules and amended for my own personal use (with thanks) : It is up to you to investigate, check, double-check and check yet again before you make any decisions or take any action based on any information you glean from any of my posts. Although I do carry out careful research before posting and never intend to mislead or supply out-of-date or incorrect information, please do not rely 100% on what you are reading. Verify everything in order to protect yourself as you are responsible for any action you consequently take.1 -
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.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. )Please note - taken from the Forum Rules and amended for my own personal use (with thanks) : It is up to you to investigate, check, double-check and check yet again before you make any decisions or take any action based on any information you glean from any of my posts. Although I do carry out careful research before posting and never intend to mislead or supply out-of-date or incorrect information, please do not rely 100% on what you are reading. Verify everything in order to protect yourself as you are responsible for any action you consequently take.1 -
OP you have had some lovely posts and great advice.
I would just be mindful that the GP may have done nothing wrong and your dad could have been given all the diagnosis, tests or whatever and not disclosed it to you.
That will be much harder to absorb if it turns out to be the case. I truly hope you get the answers you need.11
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