Can a diagnosis be given in hospital without GP being informed?

[sparky023]

My Dad has been under assessments with the GP and memory clinic for a few months, we have been fighting to get support for us as a family and for him as living alone and not managing everything very well.
Last week Dad was admitted to hospital in an emergency capacity, he had an angiogram and now has started on dialysis. He's currently in a state of Delirium, (which he suffered 2 years whilst in hospital), and so is far more confused than he normally is, and is having hallucinations etc.
A nurse has pulled the curtain around the bed this afternoon whilst my sister was visiting Dad and declared "your dad has already been diagnosed with Vascular Dementia, and shouldn't have been driving for a long time".
He was making out, this was in Dad's medical notes.

How can he already be diagnosed without any of his family knowing, why would the GP and memory clinic be assessing and testing him for a memory condition if they knew this all along??

I am very angry, that this was announced to my younger sister, with no warning. I am Dad's next of kin. And in front of Dad too. But if he's told us this and misread something or misunderstood something in Dad's notes, then surely this is a case of serious error. And if it turns out, that every professional in the services, knew about a previous diagnosis, that neither dad is aware of, and his two daughters are not aware of, and he's been allowed to just get on (and deteriorate over the past year with no external support) and no one telling him or us he shouldn't be driving, surely for goodness sake, this is a huge failure.

Any thoughts please??

 

[fizzie]

My first thought was 'shocked' but the problem is that if your Dad sought advice and investigation by himself then the professionals do not have an obligation to let family know, quite the reverse in fact they have a duty not to disclose personal information - is it possible he asked for them not to be told? They do have an obligation to the DVLA however, to notify them if they felt he was unable to drive.

However if this happened I can't understand the current investigations either. Puzzle. I would speak to the Ward sister or the matron or the consultant and relate the incident and ask them to tell you when he was diagnosed, at least that would clear up the initial worry (one step at a time) and straighten out the pattern of events. Word of advice - keep calm and keep to the facts because you don't quite know at the moment and you need their help to find out and it is very easy (says she who is a hothead) to rush in angrily and lose their support. If they are not helpful and there is no reason why they shoudn't be (do you have Power of Attorney? useful documents ) then go and talk to PALS at the hospital and ask for their support, they are there for you.

Good luck, take care of yourself and please let us know what happens

 

[sparky023]

Thank you very much. Dad already gave his permission for GP and health professionals to discuss his results, tests, medications etc etc. and believe me, hasn't sought investigations himself. He hasn't managed his meds or appointments without me for months! Hence why we know something's up!! But i do have PoA and I unfortunately had to contact PALS at the weekend so had a meeting with manager of the ward yesterday. That meeting was very positive so I'm hoping the friendly and supportive lines of communication are still open tomorrow! I will let you know, and thank you for your response xx

My first thought was 'shocked' but the problem is that if your Dad sought advice and investigation by himself then the professionals do not have an obligation to let family know, quite the reverse in fact they have a duty not to disclose personal information - is it possible he asked for them not to be told? They do have an obligation to the DVLA however, to notify them if they felt he was unable to drive.

However if this happened I can't understand the current investigations either. Puzzle. I would speak to the Ward sister or the matron or the consultant and relate the incident and ask them to tell you when he was diagnosed, at least that would clear up the initial worry (one step at a time) and straighten out the pattern of events. Word of advice - keep calm and keep to the facts because you don't quite know at the moment and you need their help to find out and it is very easy (says she who is a hothead) to rush in angrily and lose their support. If they are not helpful and there is no reason why they shoudn't be (do you have Power of Attorney? useful documents ) then go and talk to PALS at the hospital and ask for their support, they are there for you.

Good luck, take care of yourself and please let us know what happens

 

[AnneED]

I would say that, much as I have respect for the work of people who manage to work in the overstretched NHS, communication is often the loser in their list of tasks.

One of several anecdotes:
Mum went into hospital for one night as she had flu and had keeled over. When she came home the next day she had been given high blood pressure tablets. Her blood pressure has always been low. My sister who trained as a nurse, took her blood pressure which was normal, threw the tablets away and ditched the prescription. When we next got her Aricept delivered, she had blood pressure tablets too and these were in the drawer waiting for the carers to dispense. I rang the pharmacist who was helpful then the GPs. This is always interesting as some receptionists ask a few questions, then action what I say and some still say that I cannot speak for my mum. Eventually I was told that a GP would have to come out and check mum before the tablets could be removed. This happened, her blood pressure was normal and the tablets taken off the prescription.

When Mum was diagnosed the GP ran a short test which she passed with flying colours but on my determined request referred to a consultant. The consultant, it turned out, was excellent but initially left the interview to a registrar who was so bowled over by mum's evident abilities that he thought she was fine. I wrote in detail to the consultant who then said that it was often the case that dementia (or cognitive impairment as it then was) doesn't really show in basic tests but my letter was sufficient evidence so at the next appointment Aricept was started and follow up arranged. No scans, didn't need one. Alzheimers was clear from how her memory loss impacted.

Hospitals rarely have time to read the full and extensive notes on a patient (and neither do GPs - ours, who we though was good, said something to Mum at her review about smoking 20 a day - she has never smoked - how that ended up in her notes I have no idea!) The nurse should have been more careful about making the statement so openly about your dad's condition (though I can see why she might have done so - some of us clearly have the opposite experience where we cannot get the health professional to talk to us about a relative at all - which I do understand the issues with.) The main thing is that there are family members like yourself who can negotiate their way through this bewildering system for your dad's benefit.

 

[fizzie]

All these stories make my toes curl. I really hope that you get the response that will help and look forward to hearing about the next stage.
Anne your stories are frightening, terrifying in fact because someone with less knowledge or an elderly person with no advocate would still (if they were still alive) be taking tablets which were not appropriate and potentially damaging. I often look at people in homes and wonder if with the right treatment and the right support they would be in that position. The level of errors in the NHS now is totally unacceptable and is really impacting on peoples' daily lives.

 

[AnneED]

It IS scary and it is sad, but everything in the world is highly complex today and very hard to manage even if you do have all your faculties.

I find such minor things as my mum's bank annoying enough when you can't even leave her savings in a long term account because the deal ends and you find that she's not earning any interest at all without you engineering a new account.

As we know people's health and wellbeing and the need for the NHS is a far more important matter than a few pence of interest. I guess that because I trained as a social worker I see this as a personal challenge - getting it right for my mum (and seem to end up supporting elderly friends as well when they have issues - it feels as if I should share my resources with all the people I care about even though that probably adds to the pressure!) Then I feel I should use my vote, even though it's only one vote, and make my views known where it matters, and pass round information in a forum like this so people can also use the resources and think about the bigger picture. Life will always be a challenge.

But there are good people out there (it varies on the time of the week as to whether I feel there are a majority or a minority!) and working with, within and against 'the system' is the only option. Fortunately a lot of people with dementia do have caring relatives and I just try not to think about those who are less fortunate as there's only so much an individual can do!