Given diagnosis of Alzheimer’s over the phone

[Firecatcher]

My mum has been under a memory clinic for just over 12 months and initially was given a diagnosis of mild cognitive impairment. Following a further test using the Addenbrooke’s Cognitive Examination and with a score of 10 points lower than last year she’s now been diagnosed with Alzheimer’s. I’m not particularly shocked as I was expecting this as I was never fully in agreement with the MCI diagnosis. What I’m really appalled about is the fact the bad news was delivered via a phone call from the clinic. The staff member informed my Dad without speaking to my Mum and then left him to explain. My Mum is very capable of understanding, can hold a conversation and has never been in denial about her memory problems. I feel the service have been very unprofessional and would have expected something so serious and life changing to have been explained face to face.

I would be interested to hear of other people’s experiences about the way the diagnosis was conveyed and whether my parents treatment is standard practice.

 

[jaymor]

We were called by his consultant’s secretary to make an appointment to see her. She gave us the details of the results of all the tests and scans and told us it was alzheimers. She explained medication, she told us of everything we needed to put in place i.e. power of attorney, wills and any benefits we might be eligible for. My husband was 62.

She was ready to answer any questions and the only one I could think of was driving. She said she was confident he could continue to drive but we must advice the DVLA of his diagnosis. He did in fact continue to drive for a further four years. Of course once we left her office and started to digest the diagnosis there were a thousand questions I could think of. Thankfully we were assigned a Community Psychiatric Nurse, CPN and she was able to answer all the questions we had.

 

[LynneMcV]

I agree @Firecatcher, giving such news over the phone does not seem very professional or considerate to me.

When my husband was being diagnosed he attended the first couple of appointments on his own. After the second one he returned with a note from his consultant asking if I could attend the next session with my husband, which I did.

It was at that session that the consultant showed us the results of scans and tests, and told us that she was confident that my husband did have a dementia and that she wanted to start him on medication straight away rather than wait a further 6 months while various other tests were carried out.

She answered all questions we could think of with a clear consideration and calmness.

It was all done very sensitively and I was glad that I had been invited along for the breaking of the news alongside my husband.

 

[Lawson58]

My husband was given the diagnosis by the consultant in his rooms and he also received a letter from the neuropsychologist who had done the assessment. The letter of about three pages in length was very informative and had a lovely gentle overtone, giving the impression that the writer understood the implications of the diagnosis for her client.

The follow up assessment about three years later was handled a little differently but was quite appropriate for the situation. Once the results were back, we attended a meeting with the consultant, the neuropsychologist and an occupational therapist which went for about an hour. A few things were explained and my husband told them he wasn't going to do another assessment which was accepted and understood. He still sees the consultant every six months.

I think the way the clinic conveyed the diagnosis to your dad to pass on and explain to your mum was dreadfully unprofessional and I think I would be writing to the clinic to complain and if you have the name of the person who made the call, it would be quite appropriate to include that information in your complaint.

 

[Lynmax]

My mum received her diagnosis by the consultant who had reviewed the results in a visit at mums house. The consultant asked mum to make him a cup of tea so he could talk to me and my sister on our own before telling us the diagnosis. We were then able to get his help to stop mum from driving and to complete LPAs as she was of the generation to respect medical professionals.

 

[sausagedog]

My mum has been under a memory clinic for just over 12 months and initially was given a diagnosis of mild cognitive impairment. Following a further test using the Addenbrooke’s Cognitive Examination and with a score of 10 points lower than last year she’s now been diagnosed with Alzheimer’s. I’m not particularly shocked as I was expecting this as I was never fully in agreement with the MCI diagnosis. What I’m really appalled about is the fact the bad news was delivered via a phone call from the clinic. The staff member informed my Dad without speaking to my Mum and then left him to explain. My Mum is very capable of understanding, can hold a conversation and has never been in denial about her memory problems. I feel the service have been very unprofessional and would have expected something so serious and life changing to have been explained face to face.

I would be interested to hear of other people’s experiences about the way the diagnosis was conveyed and whether my parents treatment is standard practice.

this is pretty appalling and not at all how things should have been dealt with. If you wish to make a formal complaint (& if it was me, I definitely would) then contact PALs at the hospital and put it all in writing. They have to respond to you - I hope you get some kind of answers because IMO it’s just totally inappropriate dealing with things like this with a telephone call.

 

[Grannie G]

I agree. It`s the most inconsiderate way of giving a diagnosis. There is no way the staff member could know how this information would be received.

 

[Firecatcher]

Thanks to everyone who replied. This has helped confirm that giving a diagnosis over the phone isn’t usual protocol. I’m in the process of making a formal complaint and have reported this to the CQC. I’m not hopeful of anything being done but hope others receiving care from the same team as my Mum won’t have bad news conveyed in this way.

 

[Woo2]

I too think that is awful , would they have done that if your mum was unsupported . I find it strange that the memory clinic called my mum to make an appointment and never spoke to my dad , consequently they missed some appointments as she had forgotten what they said when she got off the phone , dad had to tell them to write with appointments so he had a chance to see them . Surely this is basic stuff . Glad you are lodging a complaint .

 

[Firecatcher]

I’ve received an acknowledgement from the NHS trust regarding my formal complaint although I’m sure they’ll simply cover their backs or try to justify their inadequate care.
I believe someone is visiting my parents next week to deliver medication and help them complete a form to claim Attendance Allowance. This is the only contact they’ve had since the diagnosis was given over the phone a month ago.
Both my parents are still really upset and I’m absolutely seething. The trust has already had a lot of bad press so I’m determined they won’t get off the hook with this one.