Letter of diagnosis sent to AD sufferer - your experiences please

[Animus]

Today, a copy of the letter of AD diagnosis (written from the memory clinic to the GP) was sent to my relative. I was truly horrified at this as it contained statements which, although true, would be very unsettling (and possibly depressing) for him to read. It was written for a doctor, not a patient.

Is this standard practice in your experience?

I work very hard to try and make things positive, and I can't see how this bleak letter would be of benefit to a very confused man. Surely a copy should only be sent to the patient upon specific request, or after discussion with the primary carer. Your thoughts please.

I should add: he already had the diagnosis verbally from the Clinic & took it very well. Therefore I felt the letter was unnecessary. Also, descriptions of his behaviour were written in the letter, which although appropriate reading for GP, would be unpleasant for the sufferer. He has early onset, aged 63.

 

[Butter]

Welcome to TP. Sorry to hear about your dad. Yes - my husband's consultant wrote to him - including covering everything with question marks. It is all down to patient confidentiality. Even when my mother was unable to read a word and was near death, letters were written to her which my father opened.
Doctors are obliged to inform patients directly. This is also to do with human rights. If your dad wishes someone else to be informed, he has to make his wishes clear.
If a patient is assessed as having lost capacity they should still be informed.

 

[Big Effort]

Hi Animus,
I was sorry to read about your Dad having to read the harsh reality of his diagnosis. I don't live in Britain, so cannot comment on what is appropriate, normal or bad practice.

However I write to you on a slightly different tack. It is clear that you are distressed that he should have been confronted via a letter, so harsh and blunt and impersonal. And especially such a personal, devastating diagnosis.

My mother (85) with Alz has always had a huge horror of 'losing her marbles' and so, when diagnosed we decided not to tell her. GP and neurologist (in France) agreed that it could be a suicide risk, bearing in mind her feelings about mental weakness. Then a stupid niece wrote her a long long letter comiserating with her situation, suggesting she sell her house and find a good home asap. Mum was distraught. But get this: distraught for me!!! She didn't want me upset.

Now she has conventiently forgotten the letter, has a great relationship with that niece, and is in total denial about her condition. She might admit to a slight, very slight memory problem, but as she says, that is normal for an 85 year old. This behaviour confirms to me what I always knew: she doesn't want dementia and so goes into denial now that she has it.

All a long and round-about way of saying that this is an opportunity for you to carefully observe your Dad and how he takes the news. It will help you to know how he wants the issue dealt with. Will he accept it? Accept it and want some actions taken? Or will he forget he ever read the letter? Now is an opportunity for you to be there for your Dad, helping him to make plans for a difficult future, if that is what he wants.

Hope you can make some sense out of this. All the best, BE

 

[Countryboy]

Hi how different were are in respect to dementia I had a diagnoses of dementia and I
always request a copy of all letters written about me, because I want to know what their saying I don’t always have a copy but they can’t stop you going to the GP surgery and reading it there and you can always take a photo or scan the letter on your mobile phone

 

[nmintueo]

I strongly endorse a general -- but not indiscriminate -- policy of copying letters to patients. Whether the clinic followed good practice in this instance is open to question.

Ref
Copying letters to patients: good practice guidelines
http://www.dh.gov.uk/en/Publication...ions/PublicationsPolicyAndGuidance/DH_4007561

No surprises
2.5 Where the letter contains abnormal results or significant information that has not been discussed with the patient, it will be important for arrangements to be made to give the patient a copy of the letter after its contents have been discussed in a consultation with the receiving professional. As a general rule the contents of copied letters should reflect the discussion in the consultation with the sending healthcare professional, and there should be no new information in the letter that might surprise or distress the patient.

The guidelines also touch on issues of mental capacity and consent to receiving letters.

If you think the clinic didn't adhere to good practice, let them know.

 

[Countryboy]

Thanks for that information nmintueo, I will email my GP surgery tomorrow and ask them for their Policy & Procedure on the NHS guidelines Copying of Letters to Patients best advise I had on TP

Tony