What planet are they on?

[RobinH]

Mum has mild cognitive impairment. She’s been attending the local memory clinic for about 4 years, and I have seen her GP many times with her, at the surgery and at home. She’s been admitted to hospital half a dozen times, and had ambulances called about the same again.

On Saturday I found a letter (unopened, thankfully) at her house from the surgery. It’s a generic letter, and is carefully addressed to

Dear SURNAME, Firstname (Ms) – except to her real name.

It goes on to say, in verbose formal language, that they are writing because as someone suffering from one of 7 named diseases (diabetes in her case), she may be at risk of ‘memory difficulties’. They invite her to make an appointment and bring in a urine sample.

I’ve got 2 problems with this. Firstly, she’s on file with them as having a diagnosis of Mild Cognitive Impairment – what the hell is the point in sending her this letter? Didn’t they look at their files and exclude people already diagnosed from their mailing? I actually asked this question of the surgery. The practice manager says they were asked to exclude only people who have the words Alzheimer’s or Dementia on their file – so all the other patients who have already diagnosed memory problems will have got the same letter.

Secondly, this letter is completely pointless, in that nobody who is actually suffering is going to respond – either they won’t understand, will be in denial about it, or will want to keep their symptoms secret.

It’s good that GP’s are on the lookout for dementia – under-diagnosed in our aging population. But this effort is worse than useless.

What they need to do is get to know their patients well enough to actually spot it for themselves. You’d only need to speak to mum for 2 minutes to discover she has no short term memory.

The second thing they need to do is change the law so that doctors have a DUTY to respond if a close friend or relative reports reasonable suspicion of memory problems to them. Most of the problem of under-diagnosis is due to the patient not remembering to mention it to the GP!

I’ve written to the practice asking if they believe mum will benefit from seeing them – given that they are looking for something that they know they’ve already found. Awaiting reply. It’s this kind of tick box nonsense that’s messing up the NHS.

 

[Ann Mac]

Not the exact same issue as you have faced, but I can list several occasions where Mil received letters, from her surgery or from various hospital/specialist departments, and even benefit offices/social services, that were completely inappropriate, given her diagnosis and condition She would get letters from the surgery requesting she make an appointment with either themselves, or with one of the departments at the hospital for one of her many medical conditions - and she would open the letter, read it, put it somewhere safe and then forget, or make the appointment there and then and then forget, or even put the letter into the bin - unopened and often torn to shreds. By chance, we might find the letter if it had been 'put somewhere safe' - more often we found letters saying that as she hadn't made the appointment or had failed to turn up for an appointment, she was being removed from a consultants list. Mil was (and still is) in denial most of the time, and POA has never been sorted (something we are trying to rectify now) but surely the diagnosis is enough to encourage the use of a little common sense.

The worse 'letter' however, was one from social services, shortly after she had finally accepted carers coming in just twice a week - where it referred to her being 'diagnosed' with a 'mental incapacity' - sod's law this was one she opened and read, and the distress it caused her was horrible. We got phone call after phone call where she begged us to tell her she 'wasn't mental' The SW KNEW she was in denial, knew she got upset at any mention that she may have AZ or dementia - but this was another instance of it being a standard letter, sent out, irrespective of the individuals situation, needs and circumstances

A 'One size fits all' attitude , that actually doesn't fit anyone

 

[sistermillicent]

I absolutely hate this kind of letter, I feel it serves no purpose but to put GP's in the position of being health police, they would be far better sending out something detailing what is on offer generally for everyone and letting people decide for themselves.

I sympathise with what you say about people with memory problems forgetting to go to the GP.
However, as to health professionals having a legal obligation to see someone who is reported to have memory problems, or, heaven forbid, mental health issues, I think we would be getting into something extremely scary.

I know the system is not perfect, but a lot of that comes from GPs who are over protected from the real world. I attended a lecture a couple of years ago from a GP who told us that there was this new thing called child protection, which we may not have heard of (he was speaking to a room full of experienced school nurses) and that it was going to be quite an important thing in this country. He said that luckily his practice had never seen any child who had been abused as they are located in a nice area where people don't do that sort of thing. What an idiot.
I think you just get the good and the bad.

 

[Rageddy Anne]

Nothing to do with"the System" but inappropriate and potentially upsetting was a letter we received yesterday, describing in detail exactly how wonderful a particular Care Home is for people with Dementia, and the bottom line was looking for donations. It was addressed to us by name and WAS COMPLETELY UNSOLICITED. The Care home is far away from here.

If my husband had opened it he would NEVER have believed I wasn't secretly looking at Care Homes, something I have never done. His trust in me would have been terribly damaged. It's been noticeable that since my husband's diagnosis we've been deluged with begging letters from organisations related to Dementia, and some phone calls. Where did they get our details from? Makes me wonder whether my computer is private!

 

[Linbrusco]

Beggars belief doesn't it?!

Is not any better this side of the world.
Despite our Hospital and area Health Board having my name & address & phn no for anything related to Mum as her POA, last week she received in the mail a letter from the hospital Radiology Dept for Mum to have a chest/stomach/pelvic CT scan.
This is a follow up from bowel surgery in January.
Needless to say Mum read it, and was all in a tiz because she has it in her head that she has more cancer. Now that she knows she is having a scan she will be all anxious.
To make matters worse, it is on the same day next week that my son is having knee reconstruction surgery, so Mum is already in a panic about her grandson going into hospital.
Personally I wouldn't have told her to the actual day.

Radiology Dept excuse was the use a different computer system and the letter is always sent to the patient. This is despite having my address for correspondence.
I asked for all Mums address & phn nos to be removed from the system, they said they cannot.

 

[Witzend]

Yes, it's completely brainless, and the systems can't or don't incorporate any flexibility or common sense. Maybe it's also down to the fact that so many people, professionals included, can't seem to grasp the fact that most dementia sufferers CAN'T remember things, hide things, throw things out, etc.

The worst letter we had was from the council, re council tax reduction since the only resident was suffering from severe mental incapacity, or whatever the words were. It was addressed to my mother, despite my brother who had P of A telling them categorically to send it to him. Of course my mother was absolutely incensed and very upset. I got round it by telling her that that was useless councils for you, they had muddled her with someone else and I would sort it out. Luckily her short term memory was so bad by then that she very quickly forgot about it.

 

[Molly's Mum]

Oh boy, it really does beggar belief, and it's not just the NHS or the statutory departments that seem to have this lack of common sense.
My MIL had to spend her last months in a NH she hated, and my FIL, as ill and fading as he was then, would travel miles to visit every day. MIL was very debilitated, and FIL was fading fast - so much so that we said to the NH to not just send him letters about official stuff but to copy us as well, cos he was then putting them in safe places or simply not opening them at all, or panicking, and with his weak heart that was never a good thing
As we had joint POA, this ought not to have been a major issue, you'd've thought.... but no, they continued to only send FIL and didn't send to us, so a whole heap of avoidable problems brewed which we certainly never needed on top of watching them both fading away.
Got to the point where the manager at the NH regularly got my point of view!!! At one point I got a bunch of flowers sent to me by way of apology for some such mess up from the regional manager - cos this was a national big organisation, at least there was someone higher to approach.
It's always tiring, and the extra issues they cause are even more irritating because they seem to be so unnecessary, but keeping on giving them jip seems to be the way forward - squeaky wheel getting the oil and all that.

 

[stanleypj]

Many of these issues arise from the system that allows GP practices to claim finance every time they carry out a particular check or examination. A few weeks back I fielded three separate calls from our surgery asking if my wife would like to attend for a '20 minute health check'. This despite the fact that, because of her condition and the various checks and tests she has had done over the years, they already know a good deal about her.

It annoys me that they do not have a prompt to remind anyone calling her that she has not been able to use the phone for years. They have said they will do this now.

 

[pcrooks]

Hi,
I had a problem in the early days as my GP was not allowed to talk to me about my wife's problems (patient confidentiality). So I wrote a letter in her name, which she signed, stating that I was to be informed about everything medically. The surgery now phones me and I am accepted as her carer. This is also now in her notes at the two hospitals we have to visit about other medical issues, again they now inform me about any procedures that are needed.
A final point, I have applied to the Social services for a "carers emergency card" just in case anyone does query my need to be with her.

 

[pippop1]

To Witzend - we had the same letter with MIL about the reduction of Council Tax. We also told her it was mistake and we whisked the letter away. Very sad as she would have been delighted to hear about it in some ways.

At the risk of being boring, as I have said it on this forum before, we used the activated POA to arrange via the Post Office for all her post to be diverted to our address, to ensure that we never miss anything and that she does not see inappropriate letters in the future.

This means that if anybody orders something fraudulently (there was a problem with a catalogue company once with goods received but not ordered by her (girls clothes) in a different name but her address, we would get the delivery and would refuse it.

There was also an incident of her taking in a parcel for a neighbour (the postman asked her) and then taking to another house (not the intended recipient) when she realised it wasn't for her. Unfortunately the real recipient was on holiday so didn't get the package from MIL's neighbour and started a claim with the Post Office that MIL had stolen his parcel. MIL had no recollection of signing for parcel but the PO had her signature. See why we did the divert thing now?

She hasn't noticed and still gets all the normal rubbish like Pizza leaflets through her door. It costs around £60 per year and is the same form that you use if you move house and want post sent to your new address. We did have to take the activated POA along to the Post Office and show them (plus ID) but it seems quite cheap considering the amount of trouble it has saved. You can even get them to divert post to another country like Australia and that was only about double what we pay. I was very impressed with this price and the service works well.

 

[Lyndam]

I have had similar experiences with unsolicited mail. Dad (age 85) is in a specialist dementia care unit as he has mixed dementia. He had a fall - the paramedics were called and he was taken to hospital A&E where he received good thorough care and was soon returned home. However a few weeks later he received a lengthy letter asking him to complete an enclosed questionnaire about the quality of service he had received from the paramedics and ambulance crew. He was unable to understand it and it caused him great distress. He couldn't remember the incident let alone the sort of care he had received. I threw it away. A few weeks later he received a follow up letter and another questionnaire. I wrote to the service explaining the situation and did receive an apology - But you would have thought that his address might have made someone think twice before sending it.
Lyndam

 

[Not so Rosy]

Nobody seems to join the threads up !

Dad gets wonderful care from the GP, the CPN and SS. Everyone knows he has Dementia and Alzheimer's but they still keep sending correspondence to his home address despite me telling them God knows how many times to send it to me.

We have missed MRI scans, Consultant appointments and I can't even guess what else. The only people weirdly enough who seem on top of their game are the DWP.

 

[queenquackers]

It's frustrating for all concerned, but there's only so much you can do with memory problems of any kind. My mum's GP usually prints off little labels to stick on a calendar or diary as a reminder for when you have an appointment - but then Mum loses track of the days and ends up going too early or too late (last time she went to the doctors every weekday over the course of a week because, although the receptionists would very patiently remind her that she didn't have to be there for some days yet, she'd still be unable to remember exactly what day it was, let alone what day her appointment was on). She's also beginning to lose the ability to read - it's already a struggle to make sense of something she can read the words of. My dad has now taken to crossing days off the calendar as they pass, and taking more time off work when Mum has any sort of appointment to attend - maybe more GPs should officially allocate a carer (spouse, child, etc) who could be put in charge of the memory-impaired 'patient's' medical affairs (eg, arranging appointments and making sure patient attends)? I believe some places do do this, but obviously from the posts on here (and my own experience) more needs to be done.

 

[HanSpan]

I did the same thing as someone earlier up the thread - had Dad sign a letter saying all medical things should be copied to me & with all my contact details. Fat lot of good that did!
He's constantly confused as he has contact from: Psychologist and Psychiatrist at the memory clinic, and now an Occupational Therapist; the warfarin clinic and the district nurse who comes to take blood for the warfarin; the 'leg' man after his hip replacement and recently broken leg; the neurology department about his weak/wobbly legs; now a community physio; from time to time heart people about his irregular hearbeat plus the saga with the GP surgery where he doesn't like his registered GP so wants to see another - that's all fine - but they won't let him actually change registered GP.
Someone without any form of dementia would be confused by that lot but how on earth is he supposed to cope? And they just don't seem to understand when I tell them to stop sending random letters and calling him and making appointments that he forgets to write down.

I did have a small victory yesterday (I think) with the warfarin people who keep giving him instructions to take alternating doses - so something like half a pink one one day, a blue one the next. Fat chance! So Dad & I settled some time ago on a dose slightly less than they stated but the same every day and he has explained this to the nurse, who says she has told the warfarin people. Yet they still regularly retest and send new crazy dosage instructions. So I called and threw a bit of a wobbler and told the warfarin lady over the phone, in no uncertain terms, that they were being very foolish and that I could sense that if they continued Dad would tell them all to bog off and refuse to take any warfarin at all (he's always going on about how he things its a waste of time anyway). She finally seemed to get through her head that no matter how many times they told him to take something.25 it just wasn't going to happen, and that him taking something different from what they think he is taking was making their testing all rather meaningless! So finally she has put a note on his file that says 'patient cannot cope with alternating dosages.
Phew. But I do object to having to become very assertive to get them to listen, and think how unfair it is that people unable or unwilling to be that forceful will probably suffer even more.

I really sympathise with anyone else struggling to get health professionals to talk to one another and behave sensibly. I actually think they should consider having a big mark on the records of anyone with these sorst of issues that says anything that isn't absolutely immediately life threatening should go through someone other than the patient - whether that be a relative, carer, someone at a care home or even one designated health professional for that patient. I suspect it would actualy save the NHS a fortune, even if they were paying for the designated person, as it must be a huge drain on resources with the amount of wasted appointments and confusion and time taken trying to unravel the mess once its all gone wrong.