Tell me what to say to a consultant who has wrongly diagnosed my dad

[Borntorunfast]

I've got a meeting with the discharge team and consultant tomorrow. Dad was sectioned 2 weeks ago. He went in with a working diagnosis of degenerative cognitive decline caused by Alzheimer's and has been on anti-psychotics. The meds are working, but because he's now calm and compliant the Consultant - who says she can only diagnose on the basis of "what's in front of her eyes" (her words) - proposes to discharge him with a diagnosis of anxiety and depression.

This is harmful as it means he wont take the meds as soon as he's out (he disputes there's anything wrong with him, and has a history of refusing to take them).

It's also harmful to my mum, as when she then has to call for help (ie when he stops taking the meds), no one will prioritise her as he 'just' has depression. Rather than the Alzeihmer's with psychosis.

Consultant has point blank refused to take into account previous medical history, testimony of other colleagues who assessed him while he was having his crisis, or any testimony from the family.

Dad can put on a good show. He 'presents' well. It has been a long, long battle to get anyone to take us seriously and now this consultant will set us back to square one if her diagnosis stands.

I have a meeting with SIX doctors tomorrow apparently and fear they will bully me into accepting their diagnosis and allowing him home.

Where he will terrorise my mother, who was having panic attacks due to his abusive behaviour.

How can I get this consultant to change her mind? To listen? To consider the evidence we have that all is NOT well, and he's not the nice cute man he appears to be because he's currently drugged up to the eyeballs? That a diagnosis based only on 'what she can see' is batshit?

I'm so worried about the meeting, it's so intimidating having to be sat there in front of a hostile, interview-style panel. I don't stand a chance, do I?

I have no advice except can you take someone with you? A trusted friend or relative who can take notes and give you prompts. Who can encourage you to not give up/in?

Could you start looking at care homes if he's abusing your mum?. That way they can keep meds under control and your mum can just visit?

Go back to the GP and ask for a new referral for a second opinion. The chance of two consultants being wrong is slim.

Have they done a cognitive assessment?

Sympathies as elderly care can be a nightmare.

It sounds like they want to discharge your Dad because there is nothing more they can medically do for him. Quite rightly you are worried about him not taking his medication. Do you think a care home would be appropriate where his meds would administered? What does your Mum want?

I would help your mother to say she is no longer willing/able to look after him and help her move out.

This tbh. I think often sending them home to family is the cheapest. Fastest way of freeing up a bed. There’s not a lot of thought and consideration given to family as they aren’t the patient.

Can you say it is an unsafe discharge as your mother will not be accepting him back home without support as she is frail and elderly herself and needs safeguarding,

When was his Alzeihmer's diagnosed and by whom? I would be referring back to that. Has he had an M R I? Memory test? Been seen by the dementia team? If not ask for those things to happen as they confirm the diagnosis.

Take in someone to support you.
Make clear notes referencing the facts - medical history, his behaviour when he's home, refusal to take medication etc and stick to those. Seek second opinions - not sure how the working diagnosis can be reduced to 'depression'! Really doesn't make sense.
Try not to get emotional (really hard I know).
Have the medics done a home visit to check the environment is suitable for him to return to?
Would your Mum be able to come and stay with you/seek a separation, so that she your dad can't be released back into her care?
Maybe able to seek safeguarding support, as your mum could be classified as a vulnerable adult due to her husband's behaviour.

"What safeguards are in place for my elderly and vulnerable mother if or when her husband stops taking his antipsychotic medication? Based on his previous behaviour, which caused him to be sectioned, I would like it to be on the record that I have serious concerns about my mother's and my father's safety going forward."

I would ask will he be discahrged with his antipsychotic medication. If yes then why are they prescribing it if he doesn’t have psychosis. And if no, then tell them
your Mum is not willing to have him home until he has been weaned of them.

Say that you are deeply concerned her discharge diagnosis and after care plan is inadequate since it is based on how he presents when on anti-psychotics without acknowledging the relevance of the antipsychotics in his care going forward.

Say that in your informed opinion, based on observing him over a number of months and not a 'what's in front of your eyes' snapshot, you strongly request that the medics need to assume that his current presentation is due to the efficacy of his existing medication and therefore the diagnosis that led to him needing this medication should be respected.

Say you therefore request that they continue to approve and prescribe his antipsychotic medication and acknowledge his schizophrenic tendencies as an essential aspect of his after care package.

Check whether Martha's Rule has been rolled out at that hospital. Among its directives is that family can request a second opinion if they feel that a diagnosis is inadequate and not in the best interests of the patient. But I don't think all hospitals have adopted it yet.

Is 'what's in front of my eyes' the new medical word salad for 'can't be arsed to look at the whole patient, so making my decision based on the snapshot of what's in front of me right now and washing my hands of responsibility for his welfare in two minutes' time when he is no longer in front of me and may present differently'? Because it is a dismally fragmented and unreliable approach.

A medic used that exact phrase on my son last week and I thought it was lazy bollocks then. DS collapsed and was rushed to hospital. He had an infection showing up in the blood tests but the doctor wouldn't prescribe antibiotics because he couldn't see an obvious infection of the ear or lungs. Four days later, at a different hospital, a sensible doctor prescribed antibiotics. And DS is now feeling better.

Please don’t be intimidated. A trained medical professional prescribed your father anti psychotics based on him meeting what I would assume is a rigorous diagnostic criteria. This should be documented in detail in the paperwork. The consultant needs to make a case against the documented medical evidence, not try to bully you into accepting an alternative diagnosis.

Had he been diagnosed with Alzheimer’s prior to this latest episode? Or was that the working diagnosis based on how he presented at admission?

Would a diagnosis of depression/anxiety with resolving psychosis feel more accurate?

I can see a psychiatrist digging their heels in about the Alzheimer’s more than the psychosis.

I've been in hospital many times. I have experienced and witnessed incompetence on a scale that is so scary you couldn't comprehend.

So it's clear this is not simple anxiety but more. But anxiety empties the bed, there's no follow up needed with social care support at home ( blocking the bed longer).

You need another adult present at this meeting. It's pretty important. You need evidence or documentation or anything that points to the Alzheimer's diagnosis. Do you have that?
If there is no formal diagnosis or anything to support it, you can, with your witness friend present ask them to tell you what they will do regards the Alzheimer's. Which you have significant reason to believe is happening. Don't back down using the word Alzheimer's once. You can say yes he is anxious and add ' because of the Alzheimer's '. We want him assessed by Adult Social Care as he is behaving abusively because of Alzheimer's ( or suspected Alzheimer's). He can't come home. We refute your claim this is Anxiety and feel strongly this is a manifestation of his Alzheimer's.

Could you refuse to take him home? Tell them that based on your previous experience you have fears for your mothers safety and for his, and cannot support him in his home.

OK, thanks everyone, this is all super helpful.

I have compiled a load of evidence over the last 24 hours - can I make them listen to me going through it? I've got 6 print outs so that each person is given one, and I've decided to treat it like a work presentation. It's a mix of family documentation, video (of him screaming like the mad man he is) and medical reporting from other people in the NHS.

It's just so frustrating: he was supposed to be there for 'intensive assessment' and he's had 2 short meetings with the consultant who's decided to disregard the opinion of the 2 doctors who sectioned him (one of whom spent a lot more time with him in hospital than she has!), and trot out a diagnosis that's just not accurate. He would have been better off not going in.

Mum wants him home, but she's so terrified now about the prospect that she's crying every time I speak to her. She's coming with me but is likely to sob her way through it. I've got to be the calm one.

This is useful, thanks. Consultant is used to very severe dementia/Alzheimers cases, so because Dad can dress, and talk reasonably well, she's comparing him to her 'usual' patients and not seeing it. I'd back down if she would include psychosis in her diagnosis, as it would unlock the care and support we need back at home (and may help to persuade him to stay on the anti-psychotics).

I'm so sorry OP. I don't have strong advice but do use the word "safeguarding" as that can carry weight

Good luck and don't let them knock you down ❤️

Make sure you express your belief that he continues to be a danger to himself and others, particularly your mother, who I assume is a vulnerable elderly adult. They may well have completed their assessment and decided not to carry it forward to a section 3. That doesn't mean it's safe to discharge him home.

Noted @ArabellaFishwife and @WeeOrcadian . I've written down "safeguarding", "vulnerable elderly adult" and "unsafe discharge" in my notes.

Why do they have to make something so hard even harder? All for the want of listening to the opinion of other medical professionals. Why do they discount everyone else like this? It's breathtaking in its arrogance.

Would they let you use iPhone's voicenotes to record the conversation for your reference later if you asked? That plus asking about safeguarding concerns might help.

OP@Borntorunfast I’m a little bit confused by your posts ….is this a psychiatric hospital he has been admitted to? Have you had community mental health team involvement in the past and has he been on antipsychotics for a while ,who originally prescribed them? It wouldn’t actually be good practise to make a diagnosis of Alzheimer’s for a patient presenting acutely/ in a crisis and if it’s a psychiatric consultant I don’t think it’s fair to say she’s “ only used to severe cases” ,that belies her experience, plus generally hospital teams are multi disciplinary so it’s also about what all the staff treating him are feeding back to the medical team. If you are presenting a case as such ,then utterly do stress your mums needs and ability to have him home in view of his past behaviour / non compliance with meds if that’s been the case previously. I had my parent discharged with a diagnosis of depression with psychotic features and it doesn’t necessarily mean extra support as psychotic features can and do resolve but I presume you want acknowledgement from the medics that he is experiencing a chronic illness that is going to continue to worsen and increase his needs and strain on your mum? Ps has he had a brain scan as sadly some people presenting with cognitive decline and psychosis actually end up with a brain tumour diagnosis.