Memory Service and lack of confidentiality

[gracie2014]

Update on Mum who was diagnosed in Oct 2014 with mild AD. She was put on a cognitive enhancer and also takes Souvenaid daily. At her next appointment in April 2015 her score improved. In Oct 2015 her score was fractionally worse at 26/30. Her checkup last week, March 2016 showed a score again of 26/30. This is all very encouraging and we are grateful that things seem stable. My concerns are this; whilst Mum was doing the memory test, myself & Dad were taken in another room to answer 'confidential' questions about Mum, ie. if we had seen any changes, could she add up money, cook etc and the answers that we gave were typed by the nurse at the time. Two days later, Mum receives a letter through the post addressed to her which detailed the questions that me and Dad were asked and the answers we gave..ie she finds it difficult to count money, she needs encouraging to do housework, she is less patient etc. The letter also talks about Mum as if the letter isn't to her!! This letter talks about AD, her medication, dementia and the details in it have really upset my Mum and destroyed any confidence that she had in her abilities. We are disgusted as we thought this was confidential! Mum is paranoid that we are all taking about her .....how can this possibly help her condition? I have phoned up the memory service who have apologised for sending the 'care plan' to her, assured me that it wont happen again as they will log it on the system and said I can formally complain if I wish. The manager is supposed to be calling me back to discuss it but so far has not. I am interested to hear if anyone has experienced this and what you all think of this.

 

[Canadian Joanne]

I have not experienced but I do think you should put in a formal letter (I dislike the word complaint) stating how detrimental this is to a person with dementia and how they should have a standard procedure of not sending these types of letters to the patient.

 

[canary]

Yes, I would send in a letter (or perhaps contact PALS) about this, although I can see how it happens. I suspect its a consequence of two things that hospitals now seem to be doing routinely. Firstly, there is widespread use of an electronic letter system by which a copy of the letter to the GP is routinely sent to the patient (as part of most hospitals communication protocols) unless it is over-ridden. Secondly, there is increased use of typing pools. Instead of each specially having their own secretaries, the letters are sent to the generic typing pool where the secretary might be typing some peadiatric letters, then orthopeadic ones and then some from the memory clinic. If the automatic letter is not over-ridden for some reason then the letter will be generated and probably printed off in a different location to be put in an envelope by someone who doesnt look at the letter at all. Its supposed to be more efficient......