Tips for getting referral from GP

[Natalie J]

Hi folks,

My great aunt has been in hospital a few times over the last year or two following a fall and/or passing out. Each time the hospital staff have noticed her short term memory is poor and this time on her discharge papers it says they recommend her GP refers her to the memory clinic.

My great aunt is doing her level best to hide her symptoms and refuses to even consider going to the GP of her own volition. Social services and the hospital staff I spoke to after she was discharged have recommended that I write to her GP outlining my concerns and press them to make this referral. If she refuses to go to the memory clinic I can't do much about that but I would like her to get a referral and an appointment at the very least, as she might be more willing to go if the appointment has been made by her doctor rather than her seeking the appointment.

Does anyone have any tips or advice that might help me in doing this? I know what GP surgery she goes to but I don't know the name of her GP.

I did try calling them to discuss this a few years ago and they told me where to go, so this time I'll put it in writing.

I don't live nearby and don't have LPA and she has capacity and no other diagnosis.

Thanks!

Natalie

 

[Collywobbles]

The GP surgery can’t discuss your great aunt with anyone unless a) they have her permission, b) they have a health LPA for her, or c) the surgery decides to waive her confidentiality for the sake of her health and wellbeing. You could ask about c), but it’s likely that would be granted for next-of-kin only.

However, that doesn’t prevent you from telling them about your concerns. That might be the way to go, but without any expectation of information coming your way.

I’m surprised the hospital wasn’t more proactive. My Mum’s hospital delirium was such that ward staff called in staff from the Dementia Clinic. They formally diagnosed Mum and informed her GP, but it was the Dementia Clinic who arranged her first few appointments.

 

[Natalie J]

The GP surgery can’t discuss your great aunt with anyone unless a) they have her permission, b) they have a health LPA for her, or c) the surgery decides to waive her confidentiality for the sake of her health and wellbeing. You could ask about c), but it’s likely that would be granted for next-of-kin only.

However, that doesn’t prevent you from telling them about your concerns. That might be the way to go, but without any expectation of information coming your way.

I’m surprised the hospital wasn’t more proactive. My Mum’s hospital delirium was such that ward staff called in staff from the Dementia Clinic. They formally diagnosed Mum and informed her GP, but it was the Dementia Clinic who arranged her first few appointments.

I badgered the hospital staff relentlessly while she was in there and they said she didn't seem that bad but reluctantly did a MOCA assessment but told me her score of 23/30 wasn't that bad. She masks it so well going into lots of details about how she does things, but she is recalling a narrative that was the case years ago but hasn't been for some time. They can't tell the difference though because they don't know any better because they have no evidence that what she says is not accurate.

I'm not next of kin but I'm the only family member geographically close enough to help her out with anything.

I should maybe add that my main concern at the moment is that I think she forgets to eat and drink once she has eaten the sandwich her morning carers have left her with. I suspect this is contributing to or at least putting her at higher risk of falls and urinary infections, and causing her to be even more confused. That's my biggest concern at the moment in terms of her memory problems impacting her health and well being, but the other aspect is that without a diagnosis noone treats her any differently to someone with no memory problems and that makes her very vulnerable.

E.g. the hospital sent her home in transport they had arranged to get her home back in January this year, and they just dropped her off in the road at 9.30 at night in the freezing cold without a coat on rather than making sure she got safely indoors. Fortunately her neighbour found her and called me as neither of them were able to get into her house as my great aunt can't work her key safe or unlock her front door without assistance because she gets confused with the keys, and the neighbour didn't know the key safe number so she couldn't help her get in either. I don't think the hospital would have sent her home in that way that if she had been diagnosed with some form of dementia (or at least I hope that would be the case). I'm scared of that sort of thing happening again and no-one looking after her because they assume she can take care of herself (which is what she tells everybody).

 

[AdieB]

Hi @Natalie J
I had similar challenges with my Mum, the hospital wrote to the GP but they didn’t progress a referral and Mum didn’t want to discuss her memory.
We made an appointment for something else and I accompanied her to it but wrote to her surgery before hand to confirm behaviour that she had been exhibiting, I asked for nothing more than that the Dr had sight of my email ahead of the appointment, he was lovely and talked really gently about the subject but from a medical perspective and having listened to him we finally managed to move forward. I wish you all the best….

 

[SarB]

I booked an appointment for my dad to talk to his GP at the beginning of this year (2024), as he had been to the memory service in 2019 and was told to go back in a year but the pandemic intervened. My dad refused to talk about the issue I had booked the appointment for on the day and got very angry and demanded I leave the room. Luckily, I managed to speak to the doctor at the tail end of his appointment and was told I could have an appointment with a doctor at his surgery myself. When I spoke to a doctor in depth the next week they agreed to re-refer to the memory service for diagnosis but this was contingent on getting bloods, ECG and urine which he refused to go to so I eventually got a home visit arranged. After the tests came back I spoke to another doctor and it was agreed a re-referral would be made but this was not done. In the end I spoke to the memory service direct and also the local council social services and both wrote to my dad’s GP to request that they refer my dad which did eventually happen. It was a long convoluted process and I had to be very persistent, but my experience was that if you keep plugging away you can get there eventually. Good luck!

 

[Natalie J]

I booked an appointment for my dad to talk to his GP at the beginning of this year (2024), as he had been to the memory service in 2019 and was told to go back in a year but the pandemic intervened. My dad refused to talk about the issue I had booked the appointment for on the day and got very angry and demanded I leave the room. Luckily, I managed to speak to the doctor at the tail end of his appointment and was told I could have an appointment with a doctor at his surgery myself. When I spoke to a doctor in depth the next week they agreed to re-refer to the memory service for diagnosis but this was contingent on getting bloods, ECG and urine which he refused to go to so I eventually got a home visit arranged. After the tests came back I spoke to another doctor and it was agreed a re-referral would be made but this was not done. In the end I spoke to the memory service direct and also the local council social services and both wrote to my dad’s GP to request that they refer my dad which did eventually happen. It was a long convoluted process and I had to be very persistent, but my experience was that if you keep plugging away you can get there eventually. Good luck!

Oh gosh, thank you for sharing that @SarB. After speaking to various people and hearing stories a lot of stories like yours I think it's best I reconsider and don't start down that route. It would be helpful in so many ways to get a diagnosis, but it sounds like such a lengthy battle, I just haven't got the time, energy or resilience for all of that. I live over an hour away and have a full time and a part time job so my time is very limited. I find it very distressing having to spend so much time trying to convince people that she has a problem and getting nowhere. If I do get as far as someone offering a glimmer of hope in terms of believing what I say and offering some form of help or cooperation, it takes a mammoth effort and even then at least 50% of the time whoever promised to do something never follows up on it and I then have to start all over again. It's so frustrating and demoralising, and has at times made me start to question my own sanity. I am already buckling under the strain with the worry and with having to manage all the things I need to put in place or do for her already, so I really need to pick my battles. I think fighting for a diagnosis if it's that hard could break me, so as distressing and awful as I am sure it will be, I think I'll have to just wait until her condition deteriorates to such an extent that the professionals can't not see it. Grim.