death in hospital and I don't know why

[legoearth]

My brother passed away in hospital yesterday. He had been in for 9 weeks. He was initially admitted suffering uncontrollable fits. At the time nobody knew the cause and it was assumed he had been drinking too much. He was in intensive care for a week where they managed to control the fits. he was left with some brain damage as a result of oxygen starvation.

 

He was moved to high dependency where he made such good progress over the next week or so they wanted to discharge him to a psychiatric hospital ( he has had mental health problems for many years).

 

The only reason they wouldn't take him was because he had mobility and speech issues due to the effects of the fits.

 

Moved to a stroke ward where he was given physio etc and was making such good progress we had a meeting about his discharge to a stroke rehab unit.

 

It was just before this that he developed a problem with his blood. We had no idea at the time but have since been made aware that the week before he was given a transfusion whilst a relative was visiting.

this problem became much worse and still we were unaware of the problem.

 

Two weeks ago my sister went to visit him, we hadn't been for a few days. She thought he was ignoring her because of this. He was unresponsive and had his head turned away. When she got round the bed it was obvious he had had a stroke. He was staring with the right side of his face drooped. Nurses were alerted a dotor came and said he had had a stroke. He ordered a scan. I arrived and waited 2 hours. Nothing happened. Very few staff around. More visitors came so we left but still nothing was done.

 

I phoned later that night still no scan. we were beside ourselves as we had all been made aware from publicity that action needs to be swift.

It was sunday morning before we heard he had his scan.

 

It was tuesday when we got to see the consultant who showed us the scan images that revealed the extent of the stroke damage. Half his brain destroyed. Obviously the prognosis was very poor. The reason he gave for the lack of treatment was that the blood problem prevented them from giving emergency care. This was the first time anybody discussed it. They didn't know what the problem was even though it had been there for at least 4 weeks!

 

The following Saturday we arrived and he had greatly deteriorated. Again no staff to speak to. His ts hirt was dirty his mouth was in a terrible state. His teeth hadn't been cleaned for days.

 

Visited monday still no staff that would talk to us.I phoned again on the evening and got quite angry when again the staff nurse would tell me nothing. I pointed out his lack of basic nursing care. i was very upset.

Tuesday morning my sister and I get a call at work saying we needed to come in as his condition had deteriorated and doctor wanted to speak to us! This was

 

Visited Wednesday and Thursday asked about the blood problem but nobody would answer

 

He was in such a low state that they could do no more for him and would only keep him comfortable. On friday they withdrew fluids and all medication and would no longer feed him.Again I asked about the blood problem, what had been done to investigate it, what had been eliminated. The only answer I got was telling me what they would have done if he hadn't had the stroke.

 

We were called Saturday morning but were minutes too late, he died without us.

 

We are supposed to collect the certificate tomorrow but I am so angry that we don't even know what was wrong with him in the first place! Is that it? Will we never know? 9 weeks in hospital with no definite diagnosis only a stroke after 7 weeks!

 

What went wrong? How can I go further with this?

 

Thanks in advance

Edited March 24, 2013 by honeybee13
Spacing.

[BazzaS]

Firstly, my condolences for your loss.

 

I'm not saying mistakes were or weren't made, but it seems you still have unanswered questions.

 

Ask for an appointment to see his consultant.

Are you his next of kin? If not perhaps they have been given the details?

 

If you are his next of kin : ask the hospital's bereavement office to ensure you get the answers to your questions. if the death certificate is forthcoming before you get answers - In the mean time, speak to the Coroner's Officer & ask their advice : should the registration of death be held up until the circumstances of his death are made clear to the family?

[Conniff]

Such a sorry tale. You can get all his notes if your think that will help. Go and see his GP, he/she might have more information and be more forthcoming.

[legoearth]

My sister and I are his only family as the next eldest I think I would be next of kin. A delay is acceptable to us until we have clear answers if they possibly can. His life before he went into hospital has been chaotic to say the least and we had only sent cards at christmas etc for 10 years. Aparently he received all his medication for his mental health via repeat prescription and had been obstructive to mental health care and had been drinking on and off.

[scotgal68]

My sister died in hospital under circumstances not too disimilar to your brother - my deepest sympathy. I'm in Scotland so its scots law I am describing. In the hours before my sisters life support was turned off, the consultant in the ITU was in contact with the Procurator Fiscals office. Although in hospital, the death still was classed as sudden, as was your brothers.

They performed a post mortem and we were issued a preliminary death certificate to allow the funeral to take place, then about 10 weeks later we were issued with a full and more detailed one. It was negligence.

So her death is with the PF, but we wrote to the hospitals complaints person, who responded with an answer to everything. The PF is still investigating and we are hoping for an inquest- eventually.

 

There is a thread on here which had some great advice about the complaints procedure, I will look for it for you.

I hope you get answers and I know exactly how you're feeling.

[scotgal68]

http://www.consumeractiongroup.co.uk/forum/showthread.php?382922-Hospital-neglect&p=4164891#post4164891

 

Hope this helps x

[Sali]

I too am very sorry for your loss.

 

This is a sorry tale. If you cannot get immediate and efficient care for a stroke on a stroke ward, then things really are looking grim. How frequently were patients checked? How many trained staff were on the wards?

 

If it were me I would contact the coroner (by telephone and then follow-up with a written communication for your records) and express your concerns on whether the poor care was instrumental in this early death. Stand firm against any resistance.

 

I would also put in a data request for all your brother's records during his stay in hospital, including ward notes, blood test, blood-pressure, scan results etc.

 

It is troubling that you were not informed, as next of kin, of your brother's 'blood problem.' Do you now know exactly what this was? What was the transfusion for?

 

Try to make notes whilst the events are still fresh in your memory, the issues you raised and with whom and any action taken (or not).

 

One point that I find very troubling reading your post is that fluids were withdrawn - effectively he was put on the abhorrent Liverpool Care Pathway - without your permission as next of kin.

 

I'm beginning to feel that the medics are rating patients as to who is worth saving. Vulnerable people - the elderly, the disabled, those suffering mental health issues - receive a low value and are too easily written-off. Bugger the hippocratic oath.

 

If you wish to pursue the issue you will need to write a formal complaint to the hospital.

 

Sadly, if your experience is similar to that of many of us who visit this forum, the response is usually no acceptance of mistake or blame. They will offer their condolences and say that they are sorry that you felt that the standards of care fell short. They may say that they have 'learned lessons' but you will never know what these lessons were, or indeed how they have improved patient care. Basically they are trying to get you out of their hair. Stop you escalating the complaint.

 

The pursuit of truth and justice can be long and hard when it comes to the NHS.

[Old Cogger]

In wanting to know the truth there is an organisation in Bath, that looks into Medical records etc on your behalf but they obviously cost a fee, we used one decades ago and they looked at all records and incidents and report back findings sure it was a Bath based compant = Medical Investigations ?

[legoearth]

We have now asked for a post mortem. The problem now is how this will happen as it seems the process is unfair or has something not gone as it should.

We asked for post mortem.

Were asked to come to the ward where our brother died to speak to consultant.Still no answer on what tests they did to find his original illness or what they had ruled out.

Asked next day to go to office to sign consent form. Were given a leaflet to read and kept waiting almost an hour. Consultant came in and discussed the post mortem and said he had to report it to the coroner as we had requested the post mortem.(this was recorded as we weren't happy with the way the other discussions had gone). Office staff sent in who said the coroner would be in touch.

Late this afternoon my sister had a call from the hospital to come in and sign for the death certificate. I phoned them back as we haven't yet had the post mortem or a call from the coroner. They said coroner was happy for the death certificate to be signed.

Phoned coroners office to be told that the doctor had told coroner brother had died from a stroke and we wanted to know what had caused the anaemia my brother suffered from. I told the office person the scenario as it really was and he said the certificate could be changed if another cause of death was found. Neither my sister nor myself have splken to the coroner and it was us that requested the post mortem!

My worry now is that I have been told that a hospital post mortem will not be a s thorough as a coroners post mortem and that as the hospital are doing it and the doctor seems to be playing down the concerns we have it seems like the hospital are investigating their own failings if there are any.

Is this the correct protocal when relatives are not happy with the cause of death? If it is, it's like making a complaint against a police officer, for instance, then asking him to go and make the complaint!!! It seems absurd! It may be the doctor who made a mistake or didn't do his job properly and he's the one who reports it????

[Sali]

When I contacted the coroner directly over the death of one of my relatives in hospital, I was interviewed by a representative of the coroner and the PM was not carried out by the hospital. This is surely how it should be as the hospital staff could so easily be accused of bias or a cover-up.

 

I believe that it is normal for an inquest to follow a PM, when there is a question mark over the cause of death. A temporary death certificate can be issued so that the deceased can be buried prior to the inquest, which may take some time.

 

You need to contact the coroner. One thing I would say, it is important to persist in striving for the truth or you will never have peace of mind. To this end I would also suggest that you request a copy of your brother's hospital notes. The coroner would normally take a copy of these too.

 

Good luck.

[scotgal68]

I agree with Sali about seeking answers, be prepared to for lengthy timescales, we are nearly 2 years into it, we have received a report from the PF, with the coroners report. We are awaiting the PF's next steps.

 

Stick with it and good luck x

[legoearth]

Thanks for all the replies. I had an email today from PALS saying the post mortem is complete and they would like a meeting with my sister and myself. It will include the pathologist, the registrar that 'looked after' our brother a pals representative and the hospital's medical director or as the person from pals called him 'our medical director'. It's that bit that worried me. If pals are supposed to be impartial why call him 'our' ? Should we take somebody with us or record the meeting? We don't have the money for a solicitor and at this stage know nothing of the findings so don't know of there is a need. They know we want to make a formal complaint which is why, I suppose, all those people will be present. it seems a little intimidating having so many of them there. I am hoping that what we suspected turns out to be unfounded and his death was not avoidable. What do you think?

[Feebee_71]

I would think that the PALS staff member referred to the medical director as 'our' due to the fact he's commenting about him also being an employee of the same hospital. PALS are there to act in the capacity of offering advice to patients and/or their families, to assist with gathering information and to liaise with hospital departments on behalf of the patients/relatives. They remain a department employed by the hospital as opposed to being independent of it.

 

They may have the medical director there to address any questions that the meeting might raise rather than not having to wait for another occasion to bring them forward.

 

I doubt you need to take a solicitor or any representation with you but it may be advantageous to take someone to support you and nots sister, who can listen to what is being said and who is likely to remember smaller details of the meeting that you may miss. Alternatively you could find it useful to record the meeting so you can half a record of what is said - it helps in times of stress to know if something was (or wasn't) said.

 

Feebee71

[Conniff]

I would think that the PALS staff member referred to the medical director as 'our' due to the fact he's commenting about him also being an employee of the same hospital.

 

I would agree with that. Most people refer to the place they work as 'our'.

[Sali]

Definitely, definitely, definitely covertly (don't waste your breath asking for permission) record this meeting as well as taking a relative or friend along with you. It may be a dreadful thing to say, but you really should not trust anyone at the hospital - and that includes PALS. They will want this matter brushed under the carpet to prevent any chance of litigation. Have you applied for your brother's hospital records under yet? It would have been best to have these prior to the meeting.

[legoearth]

I saw the advice to ask for his records but with one thing and another I forgot to do it. How do you go about requesting these? Thanks again all for the advice. We will record the interview.

[Sali]

You need to contact PALS (they had to have some use) about the form required for your data access request. It can cost upto 50 pounds, but as you are only asking for a limited amount of information (from your brother's admission to his death) it should cost less.

 

You need to go through these notes (painful) and try to make sense of what happened. I used the web to research points that I didn't fully understand.

 

I would write down the questions that you would like answers to. Obviously you will need to make a show of writing down their responses, because they're not to know you are recording the conversation.

 

My other advice is to remain aloof. Do not discuss your brother's past history, medical or otherwise, or offer any information. These people are not your friends, however sympathetic they may appear. Also, don't let them intimidate you. Despite their years of training and certificates, (although I was often left wondering if these were genuine), they are fallible. There is no such thing as a stupid question. These people are adept at wearing out the souls of complainants, making them appear vexatious and paranoid.

 

Of course, I hope your meeting is constructive and provides all the answers you desperately need to make sense of what happened to your brother.

 

One last thing, you can, if you are unhappy with the hospital's explanation, escalate your complaint to the Ombudsman, although the process may just drain away any remaining trust and faith you have in the NHS (and this country). Of course there's the legal route too. I don't know if no-win, no-fee lawyers still exist after the recent shake-up in legal aid.

 

Anyway, good luck. I hope it goes well. Come back and let us know.

[scotgal68]

I agree, these ppl will do and say anything to cover theirs and others arses. They're not your friends. I totally removed any emotion and feeling when I dealt with them. 100% agree DO NOT OFFER ANY INFO ABOUT YOUR BROTHERS LIFE/LIFESTYLE, they will use it like they were always aware of mitigating factors that could be attributed to the cause of death.

 

There are lawyers who still work for no win no fee, if you don't get sasifaction i would go down that route.

[nolegion]

I would like to say I completely agree with the comments of previous contributors about the importance of recording meetings (it is NOT illegal to do this covertly and recorded evidence CAN be accepted in court), and getting access to medical records a.s.a.p.

 

As regards medical records, unfortunately the statutory provisions which apply in the case of someone who has died are what is left of the heavily amended Access to Health Records Act 1990 (not the Data ProtectionAct 1998, which is now largely understood and commented on at length here at CAG, and elsewhere).

 

The principal difficulty with this is that the access only has to be given to "the patient’s personal representative and anyperson who may have a claim arising out of the patient’s death"

http://www.legislation.gov.uk/ukpga/1990/23/crossheading/main-provisions

 

Very regrettably, in practice this often means that the staff concerned do a miserable and largely ignorant 'jobsworth' of a performance about refusing the right to see the records.

 

In my view, one should start hard and early insisting (in writing) on obtaining the records, and, I am sad to say, be prepared to get solicitors involved as or when met by insulting 'fob offs'.

 

Condolences and the best of luck to the OP.

[legoearth]

Thank you all. We now have the pathologist's report. They assumed alcohol was the initial cause of his fits. No signs of alcohol abuse in his flat. The pathologist had the impression that he had been completely immobile throughout his hospital stay.Not the case! We have now put in a request for his hospital records. Will update as soon as we have anything.

[scotgal68]

Good luck.. Told you they would automatically look at lifestyle failings and blame that as opposed to examining their own failings and duty of care.

I just wonder how many cause of death for those in hospital go unchallenged when the deceased has no family or next of kin x

[legoearth]

Scotgal, I totally agree. There are so many things that don't add up! Still waiting on hospital records... Neither hte medical director nor the consultant were 'able' to attend the pathologist's meeting. I wonder why?

[geoffthechef]

If i was you..I would go legal now...They will try and keep you blind..

[Old Cogger]

If i was you..I would go legal now...They will try and keep you blind..

 

 

 

There was/is an organisation based in Bath we used in the 80s after the death of my daughter, the investigation after a fuss about access to records on the day was carried out by a consultant from St Guys hospital> did cost money though! abou £400-500 if I remember correctly and that was the 80s.

Edited June 7, 2013 by Old Cogger

[geoffthechef]

A good medical negligence solicitor will know a company..They also check for continuity of the documents...ect ect...It is a long process...I have the t-shirt..My med-neg claim took 9 years..