obtaining medical records for a parent

[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.

[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!

[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.

[Sali]

The GP has the records back? From where?

 

The hospital charge for your mum's records should not exceed 50 pounds. The records should include x-rays, scans, everything - even any ward notes.

 

The GP is required to provide the same service - that is if you request it formally, the records should be copied and sent to you.

 

I wouldn't have been happy sitting in the GP's surgery, probably being 'supervised' by someone, whilst I perused by dead mum's records, even if they should offer the possibility of copying (to datastick or photocopy) the information you want to take away. It's going to be a very emotional and painful experience. It's likely that the file will be large; my mum's data was hundreds of pages in total. You may feel under pressure to hurry and miss some key information.

 

As to how you know if anything is missing. You don't. There is some cross-referencing you can do. So, for example, copies of letters from consultant to GP should be provided by both parties.

 

One last point. There IS a post-mortem report. It is inconceivable (and probably illegal) to conduct a PM in this country without producing a report.

 

Good luck.

[Sali]

Umm, well the pm report should have been included with the GP data. Have you made a formal request (for the report) in writing to the coroner. You'll need proof if this escalates to the ICO. Ask them if a copy of the report was sent to the GP.

[Sali]

Oh, this is going to be very hard for you and my heart goes out to you. I can only tell you what I did. My mum did not die from the same condition as your mum. I read the PM report first and started to research the cause of death on the internet. I then went through the hospital/GP dates making notes on dates and treatment. I looked at NICE guidelines, wrote questions in medical forums and read medical papers regarding the condition. It took a very long time.

 

I've seen mention in this forum of companies which review medical records for you. However, it's best to start the process yourself. You feel really lost and out of your depth at first, but gradually the jigsaw starts to slide into place. Be patient with yourself.

[Sali]

I've been looking for organisations that can independently review your mum's medical data, but with no joy. That's a gap in the market.

 

I have never used the Advocacy Service so cannot comment. It's worth a try.

[Sali]

Well there's one who seems to work solely on behalf of solicitors. The others are either foreign or relate to personal injury claims. If they did take cases directly from the public, I think you're right, you'd need to remortgage your house to pay the fee. Why does justice often seem to come with a hefty price tag.

[Sali]

If you are wanting somebody to sort and analyse your mum's notes, I'm thinking that it will cost more than 250. You should confirm with the private hospital (in writing) your expectations of what the fee includes.

[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.

[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.

[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

[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

[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.

[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.

[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.

[Sali]

Fletch70

 

I am sorry to hear about your losses and am glad that things are becoming a little easier for you.

 

I don't want to criticise you, I can see you have (and are still having) a very hard time, but you must see that we are all different and many of us cannot - and should not feel we have to - just accept that unexpected or untimely death is, in your words, 'just one of those things.'

 

I'm not sure what statements and assumptions you refer to. If I look back through the posts everyone has tried to be supportive. The OP knows the cause of death; she has the death certificate and the PM report. What she is striving to understand is if anything could have been done to prevent her mum's death.

 

Isn't it a normal human reaction when something like this happens? It's like your brain is filled with the flying blocks of a rubik's cube. Only pulling them all together in colour order can bring some calm back to your chaotic world. Many people who lose someone they love suddenly, (not just in medical accidents), need to know the where, the how and the why. Only then can they begin to grieve and hopefully start to heal.

 

The other point is what you find out in the course of your questioning and if there is anything the medics could learn or improve to lessen the chances of another person suffering the same fate. Sadly we have a health service that is rather too keen NOT to admit to their mistakes and shortcomings or learn by them: It has to be forced upon them. For example, in this case, the system of cardiology informing urology, who contacts the GP only for them to contact the cardiology again on behalf of the patient is, in my view, absolute stupidity and open to error and delay.

 

Personally, I would, every time, do as the OP is, because not doing so would leave me with a grief that never grows old.

[Sali]

Mr Mastiff, I think whoever raised the congenital factor originally was just expressing an opinion, not a definitive diagnosis on the OP.

 

I am not surprised that many elderly patients in hospital have been subjected to apalling care for so long. I know when I spoke to my MP some years back, I was told that her predecessor had threatened to expose our local hospital, (the one I was complaining about), on this very subject if they didn't improve and that was back in the 90s. I cannot help but think if he had of and those responsible had been publicly punished, (and I mean more than sacking), things would have improved. There's nothing like knowing your own head may be on the block to focus the mind. Too few people from mid-staffs et al have been brought to account. What message does that send out to others?

 

Fletch, you seem to have been through the mill. It is a very selfless thing to think of another's feelings - as you have with your mum - and not question the doctor about your dad's death.

 

You're right, we are all different and we have to deal with what life throws at us as best we can.

[Sali]

Absolutely, the CEO should be ultimately responsible, but every individual worker has to take responsibility for their actions too. So a nurse, doctor or HCA making mistakes or turning a blind eye to poor care has to be accountable. The GMC and the NMC seem to me very weak-kneed bodies.

 

I was deeply angered to find out that the current CEO of my hospital is the same one who my MP told me had been in charge during a previous era of poor care. Clearly they are like Japanese knotweed; impossible to get rid of.

 

I know that there have been, and still are, issues around whistle-blowing. I recall hearing the nurse Margaret Haywood interviewed and was horrified by the way she'd been treated. However, if you make the consequences for not blowing the whistle greater than ignoring the problem, a culture change will inevitably follow.

 

I think (and I take this from my own observations and those of my relatives who have/do work in nursing) there is lack of knowledge, discipline and motivation.

 

I see the need for a legally-binding nurse to patient ratio on the wards, as I feel much of the failings that I saw were linked to low staffing levels. However, it's not just that. There was a sloppiness, a lack of basic knowledge (critical), and an inertia that was, quite frankly, scary. I would abandon the degree based-training, and I would train more nurses (and doctors) in this country.

 

Finally, as I have said before, we need to radically change the complaints system. At the moment if the nurses, sisters, modern matrons, doctors and CEO ignore your raised concerns, there is absolutely nowhere to turn. We shouldn't have to wait for the CQC to make an inspection in the hope (and they do not have a great track record) that they spot the dead bodies.

[Sali]

Why was it not possible to fulfill the 1 to 6 ratio with trained, permanent staff? Were they off sick or was it impossible to recruit? The same for A&E. People do not want to go into this area because it is highly stressful and demanding? The lack of doctors means there is an insufficient pool of qualified staff to choose from? The money is not good enough?

 

The NHS has such - and I know this from the tales I hear from those inside the monster - gross amounts of unnecessary waste. It is very much a public sector disease. I have worked, as a contractor I should add, in the public sector (not the health service) and was just shocked by the attitude of the permanent staff. I couldn't understand why they didn't think of every penny spent as if it were their own.

 

As for whistlebowing. Tough question, but how would you feel if your loved one had suffered and died because worker(s) had put their mortgage and career before their duty and conscience? As I said I heard Margaret Haywood interviewed. I was furious on her behalf and disgusted by those who made her feel like such a leper, ruining her life. She got her job back, but I would imagine the mental scars will never heal. Those that treated her so cruelly were probably not punished. That is why the stakes for not whiste-blowing have to be severe. The management will have to listen and act.

 

The NHS is the only organisation that seems to be able to kill and maim with impunity.

Edited October 16, 2013 by Sali

[Sali]

Life-expectancy has increased over centuries in this country for a myriad of reasons, a very small part played by the health service.

 

I can see that meddling politicians over the years have turned healthcare workers into headless chickens. Wouldn't it be great if they (the politicians) were made accountable for all their stupid decisions, not just in office (which never seems to happen), but after they've left too. PFI hospitals would be a good place to start.

 

It's not just money wasted on IT projects. There is undoubtedly abuse of the NHS from within and without. The NHS procurement team seems to be particularly inept. They should have such clout to drive costs down because of the volume that they buy, but seem completely incapable of getting the best deal on anything, from light bulbs to drugs.

 

Do the NHS tie themselves into contracts with pharmaceutical companies rather than buy a much cheaper generic drug? Can this be justified in order to encourage companies to research and develop new drugs? How is it that certain drugs can cost much less in mainland Europe? Are we subbing them? It's such a tangled web and I don't think anyone in authority can be bothered to unravel it. Always the path of least resistance.

 

I don't want the NHS turning into (and it must seem so to grieving relatives of mid-staffs et al) one huge Dignitas clinic.

[Sali]

You're quite right.

[Sali]

Good on you, sick.as.a.chip. I'll keep my fingers and toes crossed for you.

[Sali]

I'm confused. If you have two names similar in an organisation, the right and sensible thing to do would be to ensure that the email addresses as they appear in the global address list would also identify the individual by other criteria ie. his/her department name. I cannot imagine that the NHS use a system that is so archaic that this is not possible, especially when speed and confidentiality are so important to a process. If the email, however, went to the wrong recipient, I would be wondering why they did not forward it on the right person immediately and notify the sender of their mistake. Let's face it, it cannot have been the first time this happened. You would also ensure that the internal (snail) mail department was alert to the situation.

 

The hospital are saying that this delay was inconsequential to patient outcome. From your previous posts I would question this. Do you have a copy of the email? (Don't post it, I just want to know).

 

You need to draw up a time-line of events if you haven't already, using your mum's medical notes. This will be useful if the case goes further.

 

Their inability to get your name right suggests to me a sloppy attitude which probably extends to every other area of their work.

 

The response from the practice manager stating that there was no suggestion that you would need to use legal action to obtain your mum's data shows how important it is to get everything in writing or on tape (recording openly or covertly).

 

I know this must be very hard for you. The hospital management was never going to make it easy - honesty is not their bag. This is just the beginning of a very long battle for truth.