obtaining medical records for a parent

[Sali]

It must have been awful to read that your mum's head was bumped, but I suppose I'm glad they were honest enough to admit it as not doing so could have misled the pathologist at the PM.

 

I'm just trying to get things straight in my mind. Sorry if I am asking you to repeat things you've already mentioned in previous posts.

 

How soon after the irregular heartbeat was identified did your mum get referred for an echocardiogram?

 

(Nice Guidelines: http://www.nice.org.uk/nicemedia/live/13099/50517/50517.pdf

 

+Refer patients with suspected heart failure and previous myocardial infarction (MI) urgently to have transthoracic Doppler 2D echocardiography and specialist assessment within 2 weeks (new 2010).

 

+ Measure serum natriuretic peptides (B-type natriuretic peptide [bNP] or N-terminal pro-B-type natriuretic peptide [NTproBNP] in patients with suspected heart failure without previous MI. (new 2010))

 

Are these the tests your mum had? Can you find the blood test results amongst your data?

 

I have to say, to me, 'specialist assessment' means referral to cardiologist within that timeframe too.

 

When (from your documents) did the hospital advise your mum's GP that your mum needed to be seen by a cardiologist and how soon was this after the echocardiogram took place? [25 DAYS?]

 

I note that you say the results were sent to the wrong consultant initially. Have you asked the hospital for an explanation? Can you determine whether this delay had an impact on how soon your mum was placed on the shortlist?

 

How soon after the GP was advised by the hospital did they telephone your mum? [13 DAYS?]

 

So are we saying that your mum was advised by the GP 38 days after the echocardiogram that she would need to be seen by a cardiologist? Was your mum already on the shortlist when the GP advised her and can you find out exactly when her name was added?

 

You mentioned speaking to the specialist's secretary and a cancelled appointment. Did your mum cancel the appointment or the hospital? Do you know why?

 

Do you know if your mum had any appnts with her GP after being advised that she would need a referral? Was she advised by the GP ever to take aspirin or prescribed any other drugs or advice?

 

Have you tried arranging an appointment with the cardiologist that your mum would have been referred to? If they agree, do take somebody with and have a prepared list of questions and also record the conversation (covertly, asking for permission is too risky) as it will be useful to refer back to for clarification.

[sick.as.a.chip]

Hi Sali,thank you for your reply. I will answer as best I can as the information I have is slightly sketchy.How soon after the irregular heartbeat was identified did your mum get referred for an echocardiogram? She came home from her Pre Op Assesment on the 20th December 2012 saying they though she had an irregular heartbeat and she needed an ecco cardiogram. I believe the refferal was made from who ever did the Pre Op.Are these the tests your mum had? Can you find the blood test results amongst your data? - There are no blood tests from the pre op that I canm find. the pre op assesment is in very hard to read handwriting??? she only ever had the Ecco test done.When (from your documents) did the hospital advise your mum's GP that your mum needed to be seen by a cardiologist and how soon was this after the echocardiogram took place? [25 DAYS?]The Ecco was done on 24th January. E-mail was sent by the Cardiac Physiologist who carried it out to a consultant surgeon on 25th January however it was sent to the ENT department by mistake (It was supposed to go to Urology) the E-mail stated" I performed an echo on xxxxx on 24/01/13. She was a lady with an LVH on ECG and passed fit for minor surgery (she is now post-op). Her Ecco shows asymmeetric and LVOT obstruction therfore I wanted to flag up this result to you for priority review/refferal.The report should be availible on Diadem and there will be a paper copy on its way to you.RegardsCardiac Physiologist"there is then a hand written note on the e-mail to say Urology not ENT.The next thing is a letter dated 19th Febuary 2013 from Urology to GP saying"Please find enclosed a copy of xxxxx's transthoratic echocardiogram. I have been e-mailed by the cardiac physiologist who suggested that she would benefit from a fairly urgent cardiology review. The echocardiogram was requested by the anaesthetist here at xxxxx Hospital as part of their pre-assesment.I would be grateful if you would consider a referral to a local cardiologist of your choiceYours sincerelyConsultant Urological Surgeon"this is where the 25 days comes into it. From e-mail on 25th jan to letter to GP it was 25 days floating round the departments. I also have isue with the priority being downgraded from the cardiac Physiologist saying "priority review/refferal" to the Urologist saying 25 days later to the GP "Fairly Urgent".It then took 13 days for the GP to recieve the letter and call my mum to say she needed to be seen on the shortest list" and make the refferal. it was then a further 5 weeks asnd 2 days before the date of the appointment she was given and she did not live that long to have the appointment.I note that you say the results were sent to the wrong consultant initially. Have you asked the hospital for an explanation? Can you determine whether this delay had an impact on how soon your mum was placed on the shortlist?I've not asked anyone yet for anything other than copies of the records as I dont know who to go to. I'm not 100% sure but if she had been reffered by the original person who found the problem we would not have wasted 38 days going round the departments.So are we saying that your mum was advised by the GP 38 days after the echocardiogram that she would need to be seen by a cardiologist? - spot on correct!Was your mum already on the shortlist when the GP advised her and can you find out exactly when her name was added? - as far as I am aware the GP was the one who arranged the appointment with the Cardiologist. There are no requests in any of the records I have been given for any refferal?? I'm not sure how they do this?You mentioned speaking to the specialist's secretary and a cancelled appointment. Did your mum cancel the appointment or the hospital? Do you know why? - The cancelled appointmant was because she had died before the date of the appointment. She died on March 22nd and the appointment was April 8th.Have you tried arranging an appointment with the cardiologist that your mum would have been referred to? If they agree, do take somebody with and have a prepared list of questions and also record the conversation (covertly, asking for permission is too risky) as it will be useful to refer back to for clarification - I had tried to call them but they say all the information they had for my mum was the refferal and they pretty much said that was all they knew.I really really do appreciate this and everyones help I hope I have clarified the situation a bit better and answered all the questions??I have had a suggestion from a friend who works in Mental Health who said a letter of complaint to the Turst Chief Exec will get me an investigation?? Does anyone think this is true??Thank you all!!

[sick.as.a.chip]

here is the pre-assesment form. I Cant read the handwriting!!

[sick.as.a.chip]

Hi I have found the blood test results from the pre assesment. What am I looking for??Thanks!

[Sali]

Yes, do write to the CEO of the hosptial (don't bother with PALS) expressing your concern - now that you have reviewed the notes - that the delay between the initial discovery of the heart murmur, the echocardiogram results and the appointment to see a specialist resulted in your mum's untimely death.

 

Ask if it is normal practice to wait 4 weeks from identification of the initial heart problem to the echocardiogram appointment.

 

Ask for an explanation how the initial results (24 jan) of the echocardiogram were mis-directed and the exact date the results were received by the urology dept.

 

Ask why it seemingly took 25 days for the urology dept to notify the GP (19 feb) that your mum needed to be seen by a cardiologist. Ask how the communication was made to the GP - letter, email, 'phone.

 

Ask when your mum's name was formally added to the shortlist to see the cardiologist and who the referral was made by (it should be the GP by what you've said).

 

This enquiry may well prompt them to invite you to a meeting.

 

If I were you I'd also send a second letter to the GP asking when her/he actually received the notification from the urology dept and the exact date they requested an appointment with the specialist for your mum and how they made the referral (again letter, email, 'phone). This should confirm what the hospital says.

 

The blood tests are referred to in NICE guidelines http://www.nice.org.uk/nicemedia/live/13099/50526/50526.pdf which contain a flow chart on heart failure diagnosis and the levels of serum natriuretic peptides. Is this the blood test your mum had?

 

Today I was leafing through a newspaper whilst waiting for my car to be MOT'd and an article in today's Daily Mail made me think of your situation.

 

A UK journalist who had received NHS treatment decided to seek a second opinion from a US clinic in Ohio (Cleveland Clinic http://my.clevelandclinic.org/online-services/myconsult.aspx). He paid around 1000 pound (he had a problem with his leg) including the cost of fed-exing a batch of documentation. I did not know that this service was available to overseas patients and I wonder whether they would be prepared to review your mum's notes.

 

It's not clear whether they review the medical notes of the deceased but I think it is worth an email enquiry (mychartsupport@ccf.org) at the very least. I wish I had known about them. Explain to them that you are desperate to understand if your mum's death was preventable and whether any lessons can be learned. Stress that it is not about litigation, but a way of coming to terms with your loss.

 

I'll try to read the pre-assessment notes tomorrow.

[sick.as.a.chip]

Yes, do write to the CEO of the hosptial (don't bother with PALS) expressing your concern - now that you have reviewed the notes - that the delay between the initial discovery of the heart murmur, the echocardiogram results and the appointment to see a specialist resulted in your mum's untimely death.

 

Ask if it is normal practice to wait 4 weeks from identification of the initial heart problem to the echocardiogram appointment.

 

Ask for an explanation how the initial results (24 jan) of the echocardiogram were mis-directed and the exact date the results were received by the urology dept.

 

Ask why it seemingly took 25 days for the urology dept to notify the GP (19 feb) that your mum needed to be seen by a cardiologist. Ask how the communication was made to the GP - letter, email, 'phone.

 

Ask when your mum's name was formally added to the shortlist to see the cardiologist and who the referral was made by (it should be the GP by what you've said).

 

This enquiry may well prompt them to invite you to a meeting.

 

If I were you I'd also send a second letter to the GP asking when her/he actually received the notification from the urology dept and the exact date they requested an appointment with the specialist for your mum and how they made the referral (again letter, email, 'phone). This should confirm what the hospital says.

 

The blood tests are referred to in NICE guidelines http://www.nice.org.uk/nicemedia/live/13099/50526/50526.pdf which contain a flow chart on heart failure diagnosis and the levels of serum natriuretic peptides. Is this the blood test your mum had?

 

Today I was leafing through a newspaper whilst waiting for my car to be MOT'd and an article in today's Daily Mail made me think of your situation.

 

A UK journalist who had received NHS treatment decided to seek a second opinion from a US clinic in Ohio (Cleveland Clinic http://my.clevelandclinic.org/online-services/myconsult.aspx). He paid around 1000 pound (he had a problem with his leg) including the cost of fed-exing a batch of documentation. I did not know that this service was available to overseas patients and I wonder whether they would be prepared to review your mum's notes.

 

It's not clear whether they review the medical notes of the deceased but I think it is worth an email enquiry (mychartsupport@ccf.org) at the very least. I wish I had known about them. Explain to them that you are desperate to understand if your mum's death was preventable and whether any lessons can be learned. Stress that it is not about litigation, but a way of coming to terms with your loss.

 

I'll try to read the pre-assessment notes tomorrow.

 

thank you and thank you for the links. I have e-mailed the firm in america, I'll see what they come back with!I have the details for the CEO and chairman and medical director. Just need to sit down and write the letter now! i have not found a way yet to express what i wanted to achieve but your final few lines summed it up "Stress that it is not about litigation, but a way of coming to terms with your loss" so thanks again for that!!I'll keep my post updated.

[sick.as.a.chip]

No go with the clinic in America. They don't offer the service

[Sali]

It's a shame about the Cleveland Clinic not being prepared to review your mum's medical notes. I wish such a service was available.

 

Your letter to the hospital may prompt a review, but it would be a miracle if they (or the GP) admitted any mistake.

 

I had a look at your mum's pre-op report.

 

The writing is terrible. The words in square brackets are the expanded abbreviation. A word followed by (?) means I cannot read or am unsure.

 

ECG-SR [sinus Rhythm] A(?) 15%

LVH by voltage criteria

isolated t-wave flattening v5(?)

BP [blood pressure] is normal

Manages 2 Fos [flights of stairs] - sob [short of breath] when return(?)

Suggest Echo but no need to delay minor procedure

[dent]

Well done on the translation ! I think A(?) is Axis

[Panthro]

Being honest with you sick.as.a.chip other than the mis-directed email to ENT rather than urology (and maybe delay in GP arranging) I don't see anything too unusual in your mum's treatment. Let me recap and maybe offer explanations (but I am a nurse and not in cardiology):

 

 

• Pre-op assessment - irregular pulse found. ECG and examination carried out showing possible left axis deviation but with no worrying symptoms and anaesthetist happy for operation to proceed with plan for echo.
   
  
• Echo undertaken and the sonographer sends an email (to the wrong department) requesting cardiology review
   
  
• ENT sends the email back to urology
   
  
• Urology sends a letter to the GP to arrange cardiology review
   
  
• GP phones mum/makes referral
   
  
• Sadly mum dies before appointment
   
  

 

 

 

You say in your original post that there was no worrying signs and your mum never had any issues with her heart. The irregular heartbeat was noted and acted approrpriately in my opinion. The anaesthetist wouldn't request specialist blood tests to diagnose heart failure as mentioned by Sali. It is outwith his specialist knowledge and he was unaware of the fragility of your mum's heart which only became apparent from the echo. Even more important is that an left axos deviation does not necessarily mean there is heart failure. There were no adverse signs of decompensated heart failure and he was happy to proceed with the op.

 

An echo was requested which took 4 weeks - again that seems appropriate. Our routine outpatient scans are within 6 weeks.

 

The sonographer quite rightly flagged up the result to the referrer (or so she thought). The email can be put down to human error. From my view this is the only criticism that could be made but doubt it would have had any effect on the result.

 

Urology got the mis-sent email and let the GP know about the need for cardiology referral. In my health board (Scotland) we would be the ones that do that however I understand England's system is different and the GP is asked to do this. The urologist will likely have dictated a letter, time it is typed by the secretary and then approved and posted out this could account for the apparent delay for the GP being made aware. It could be argued I suppose that if it was classed as priority then he should have phoned but that is conjecture based on the information available to him and indeed when he received it (could have been on annual leave/ ENT delayed in sending it to him etc).

 

The GP received the letter and contacted your mum to say she was being referred urgently to cardiology. The letter was dated the 19th but that certainly didn't mean the GP received it then and the delay in posting, then the secretary receiving it and then the doctor reviewing it etc could account for this apparent delay. GPs - from my experience - have very limited time for paperwork/correspondence duties.

 

The GP referred to cardiology and an urgent appointment was generated. In my speciality urgent appointments are within 6 weeks.

 

 

Please don't think I am getting at you or criticising you in any way. Just thought my impartial views from someone in the health service would be useful. If I have got anything wrong please let me know.

[Sali]

Panthro, I agree that the intial assessment was satisfactory, but I do think that the delay in the arrangement of the appointment with the cardiologist was critical here.

 

Yes, the OP says that her mum had been unaware that she had any heart issues. But, see in the pre-op assessment, she cannot walk two flights of stairs without getting out of breath. Symptoms for many illnesses creep up on us and just become part of 'life,' and we don't see them as obvious signs or warnings.

 

I cannot fathom this mad etiquette where cardiology feels it has to contact urology, who then contacts the GP, (by letter - please no!), who hopefully, when he's not too busy, arranges an appointment for the patient back with the cardiology dept! What the hell kind of system is that? It's almost as if they want people to die. What should happen is that the cardiolgy dept should send out an appointment directly to the patient, with a cc to the patient's GP and a note, if it's really necessary, to urology. In an ideal world patient notes would be stored (encrypted) in a 'digital cloud' accessible by those treating the patient. But as all IT projects that any govt runs usually falls flat on its face after millions of pounds have been spent, I shan't hold my breath.

 

The left axis deviation note is just from the pre-op report. We don't have the echocardiogram which would give more detail, but the very fact that an urgent appointment was requested suggests that heart disease/failure were either diagnosed or strongly suspected.

 

The OP says there are some kind of blood test results in the data collated from the hospital. Are these the measurement of serum natriuretic peptides specified in the NICE guidelines? Would these (together with the echo) perhaps indicate just how serious the problem was?

 

My understanding (and I may be wrong) is that it was nearly six weeks after the echocardiogram (38 days) that the GP advises the patient (by 'phone) that she is to be referred to cardiology and the appointment is finally made for 5 weeks in the future. So the patient would have been waiting 11 weeks for this 'urgent' appointment. Was there no advice that could be offered to the patient in the interim?

 

What deeply angers me about the English health service is that it never seems to learn lessons because it never assesses itself with a critical eye and consequently never sees its failings.

 

The initial bloody-minded response of the GP and the cardiology depts refusal to discuss the case with the OP makes me understand why more and more people turn to litigation.

 

On a completely different note Panthro, what is Diadem which the OP refers to in one of her posts?

Edited September 6, 2013 by Sali

[mr_mastiff]

Sali, Diadem is the I.T viewing system for reports etc.

Edited September 6, 2013 by mr_mastiff

[dent]

Urology) the E-mail stated" Her Ecco shows asymmeetric and LVOT obstruction therefore I wanted to flag up this result to you for priority review/refferal.!

From reading this and the fact that your mum had normal BP it may be she had an underlying undiagnosed congenital heart defect which lead to cardiomyopathy. This is something which it appears can be a cause of sudden cardiac arrest. It would appear it may not have been picked up at all if she had not needed the surgery she had.

http://www.patient.co.uk/health/Cardiomyopathy-Hypertrophic.htm

I think in this situation the most important thing may be to get other family members checked out as it could be a familial condition.

[Sali]

Thanks for clearing up the Diadem query Mr_mastiff.

 

Dent, if the the heart problem was indeed congenital - and remember the cardiology dept would know this being in possession of the results of the echo and possibly blood test results - you would have hoped that they would be keen to transmit this information to the OP when she contacted them.

[dent]

Thanks for clearing up the Diadem query Mr_mastiff.

 

Dent, if the the heart problem was indeed congenital - and remember the cardiology dept would know this being in possession of the results of the echo and possibly blood test results - you would have hoped that they would be keen to transmit this information to the OP when she contacted them.

Absolutely

[sick.as.a.chip]

Thank you all for your replies. I've not been on recently to check due to life being super busy so i do appreciate you all checking in!!Would it be helpful (Or wise) to post up the ecco?

[sick.as.a.chip]

oh and sorry the blood tests were not testing for heart failure

[mr_mastiff]

Thank you all for your replies. I've not been on recently to check due to life being super busy so i do appreciate you all checking in!!Would it be helpful (Or wise) to post up the ecco?

 

The echo would be very useful to clarify a number of points and i would like to see the blood results as these could give possible evidence of contributing factors. But in the end may not give you the answers that you require. Like Panthro I worked for the otherside until I become ill. Sadly I had an Uncle who died because of a cardiac event and I helped my cousin with looking through the notes from the PM etc. Like your PM report it stated that it could have happened at any time. The only question it did not answer was why my Uncle died and others with exactly the same condition and on the same medication are still alive. It is a horrible situation when you cannot get answers and I am truly disgusted by the attitude of people that have prevented you from getting your answers quickly.

Edited September 8, 2013 by mr_mastiff

[mr_mastiff]

Thanks for clearing up the Diadem query Mr_mastiff.

 

Dent, if the the heart problem was indeed congenital - and remember the cardiology dept would know this being in possession of the results of the echo and possibly blood test results - you would have hoped that they would be keen to transmit this information to the OP when she contacted them.

 

Sadly the person who she contacted would not have been medically trained only to deal with notes etc. They would not have been aware of the possible clinical significance of the report. The congenital nature of the heart condition as not been confirmed. However, Sick as a chip should go back to her GP and ask for advice on a referal due to the nature of the findings.

[Sali]

Sadly the person who she contacted would not have been medically trained only to deal with notes etc. They would not have been aware of the possible clinical significance of the report. The congenital nature of the heart condition as not been confirmed. However, Sick as a chip should go back to her GP and ask for advice on a referal due to the nature of the findings.

 

...and the GP or the pathologist? It would surprise me little if they were in possession of such information (that a condition was perhaps congenital) and not share the information with those who should be informed.

 

However, perhaps this is the key for the OP to discuss the details of her mum's death with an 'expert.'. She perhaps could go to her own GP with the echo and the PM report to express her anxiety on the congenital factor, asking for him/her to clarify or (preferably) to put her in touch with a cardiologist who can allay her fears.

[dent]

Hi my only information re it possibly being congenital is a simple search of LVOT obstruction and seems to be linked with cardiomyopathy. If it was me I would be asking more questions about this being familial

[mr_mastiff]

...and the GP or the pathologist? It would surprise me little if they were in possession of such information (that a condition was perhaps congenital) and not share the information with those who should be informed.

 

However, perhaps this is the key for the OP to discuss the details of her mum's death with an 'expert.'. She perhaps could go to her own GP with the echo and the PM report to express her anxiety on the congenital factor, asking for him/her to clarify or (preferably) to put her in touch with a cardiologist who can allay her fears.

 

Sali, The Report would only give volume measurements and other data. It would not give cause as such. The reported stated LVOT obstruction. It did not state were the obstruction was. If I can remember correctly there are three separate areas were obstructions occur all of them can have different reasons but have the same result. A congenital diagnosis as not been confirmed. Her blood pressure was normal, we do not know if she was on hypertensive medication, her blood pressure could have been at normal because she had had a long period of rest. There are so many things that we do not know It would be wrong to come to any conclusion that may cause the OP distress without having the full medical facts.

 

I believe that she would be best to go to her GP, have a talk about the report and ask for his/her advice on how to proceed .

Edited September 10, 2013 by mr_mastiff
more to add

[Sali]

Sali, The Report would only give volume measurements and other data. It would not give cause as such. The reported stated LVOT obstruction. It did not state were the obstruction was. If I can remember correctly there are three separate areas were obstructions occur all of them can have different reasons but have the same result. A congenital diagnosis as not been confirmed. Her blood pressure was normal, we do not know if she was on hypertensive medication, her blood pressure could have been at normal because she had had a long period of rest. There are so many things that we do not know It would be wrong to come to any conclusion that may cause the OP distress without having the full medical facts.

 

I believe that she would be best to go to her GP, have a talk about the report and ask for his/her advice on how to proceed .

 

mr_mastiff,

It was dent rather than me that suggested a congenital link. I suggested that if this was the case then those who would be aware of the fact should be responsible for conveying this information to those that could be effected. This I would consider a professional duty.

 

However, I can see that this possibility could be used as leverage to gain access to a specialist who would be able to assess and offer an explanation of the echo/blood/pm report (of the OP's mum), which is why I suggested the OP seek an appointment with her own GP. The PM report will give cause of death and much more.

 

The OP would never have been in this position if her mum's GP had not been so defensive and the cardiology dept had shown a little understanding of her need to understand and come to terms with her mum's death.

[mr_mastiff]

Hi sali I have already stated my disgust at the actions of some that delayed this poor lady getting the answers she needed quickly. As I have said there is much that she still needs to know and as the right in my opinion to know. The only thing that concerned me was a congenital cause was being discussed without all the facts being know. It may well be that there is ample proof that it was not congenital and no reason to convey anything to her of that nature.

 

I would not want her to become worried and distressed at this time without proof.

 

I do agree that it would be a good opening for her to sit with her GP and discuss this and other matters.

[sick.as.a.chip]

Sorr for being absent for a while. I have the details from the post mortem in the Cardiovascular system section:" The Pericardial cavity was normal. There was no effusion. The heart weighed 719 grams and sectioning showed marked left ventricular hyertrophy with patchy areas of fibrosis within the myocardium. The heart valves were normal. All three main coronary artery branches showed plaques of mild and moderate atheroma. No occlusive thrombus was seen. the aorta was moderately atheromatous with severe atheroma around the bifurcation. The venae cavae were normal."Other notes said fine "scarring of the cortical service of both kidneys suggestive of hypertension""Pathological Summary.1. Pulmonary oedema and congestion2. Marked Left ventricular hypertrophy3. Myocardial Fibrosis4. ModerateCoronary Artery atheroma5. fine renal cortical scarring suggestive of hypertension6. Healing operation site in the fundus of the baldderIn my opinion death was due to A) Chronic Ischaemic Heart DiseaseB) Coronary Artery Atheroma"