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How in touch she GP surgery be?

Agzy

Registered User
Nov 16, 2016
1,730
0
Moreton, Wirral. UK.
Since her diagnosis with Alz which will be 6 years in Februar, the Memory nurse contacted us for the first two years to do what she called the ‘annual’ memory test but since then nothing at all from her or the GP about dementia progress or medication, not even when she was hospitalised with UTI or with the chest infections she gets regularly which is due to pneumonia damaged lungs. I ask as I am not sure if I need to inform them of her continuing decline and changes or to discuss my abilities/inabilities in regard to caring. We have different GPs but I have POA.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,387
0
Kent
Good morning @Agzy

The only care our GP took of my husband was to monitor his diabetes. Everything to do with his dementia was in the hands of his consultants.

Once Dhiren reached a certain level the monitoring stopped.

As far as physical health was concerned, the GP prescribed antibiotics when necessary and liquid medication when swallowing became difficult but the monitoring of dementia slowly faded away.

I imagine you may need to ask for advice if you feel you need it now, rather than advice being offered as a matter of course.
 

canary

Registered User
Feb 25, 2014
14,313
0
South coast
Yes, my experience of mums GP was pretty much the same, although she never had any monitoring of how the dementia was progressing. Once she had a diagnosis and was prescribed Aricept the memory clinic discharged her. The GP continued to prescribe her aricept and other drugs, but did not test for her dementia, nor advised about caring - that was left to Social Services.
 

Starting on a journey

Registered User
Jul 9, 2019
548
0
I would agree; the GP prescribes memantine, and other drugs. Called her in to do a care plan which totally failed to cover the mental health part. Other than that they keep well away!! Monitoring would, I think, cause her to be unsettled. No one needs reminding what they cannot do. Mum was diagnosed July 2019 and is 90 so they know it’s all on my shoulders. I would have thought the least they could do is call the carer in for an annual check rather than just the flu jab, which obviously I am grateful for.
I really do think it’s a case of out of sight and out of mind.
 

jugglingmum

Registered User
Jan 5, 2014
5,993
0
Chester
My mum was diagnosed with dementia in 2014, for various reasons in the area my brother lives, as his GP started the process off when she was a temporary resident with him.

Once she moved up here we started off with annual reviews from the memory clinic nurse in 2015 and 2016 - which apart from confirming mum's steady decline and using a day of my annual leave to take her there, in my opinion achieved nothing.

At the second review in 2016 I was advised that they had changed their procedures and no longer carried out annual reviews, and the GP would call her in for an annual check, primarily I think BP and heart as donepezil can cause heart issues, but that if I felt mum needed it I could request the GP to refer her back to the memory clinic.

I am very happy with this so far, it seems pointless to take someone for an MMSE test that at best confuses them and more likely upsets them when no changes are needed.

Whilst we are in different areas for hospital trusts, we are in the same area for mental health trusts (I am in Ellesmere Port) so guess that is what has happened.

If your wife hasn't had an annual review with the GP I would query this with her GP
 

Agzy

Registered User
Nov 16, 2016
1,730
0
Moreton, Wirral. UK.
My mum was diagnosed with dementia in 2014, for various reasons in the area my brother lives, as his GP started the process off when she was a temporary resident with him.

Once she moved up here we started off with annual reviews from the memory clinic nurse in 2015 and 2016 - which apart from confirming mum's steady decline and using a day of my annual leave to take her there, in my opinion achieved nothing.

At the second review in 2016 I was advised that they had changed their procedures and no longer carried out annual reviews, and the GP would call her in for an annual check, primarily I think BP and heart as donepezil can cause heart issues, but that if I felt mum needed it I could request the GP to refer her back to the memory clinic.

I am very happy with this so far, it seems pointless to take someone for an MMSE test that at best confuses them and more likely upsets them when no changes are needed.

Whilst we are in different areas for hospital trusts, we are in the same area for mental health trusts (I am in Ellesmere Port) so guess that is what has happened.

If your wife hasn't had an annual review with the GP I would query this with her GP
My daughter, who is a Learning Disability nurse was based in Ellesmere Port initially and mention the cross over plus, I believe they are to merge Cheshire and Merseyside into one big trust for everything in near future. As to monitoring I keep my journal and guess that will have to do, thank you.
 

DennyD

Registered User
Dec 6, 2016
87
0
Porthcawl, South Wales
Our GP has not seen my husband at all. He was diagnosed in April 2015. The only contact he's had is with the hospital's dementia team, although they are efficient, the contact has been very sporadic. He gets his meds directly from the hospital, so local surgery is not involved. At no point has our surgery sought to make contact. He's visited the surgery for other matters, however, any one of the GP's we met with was not able to communicate with him properly in a supportive manner, they did not even refer to his Alzheimer's. Don't they check their patient's notes? For the first time in 5 years he has had a bad episode which scared me. He was fine Sunday, then through the night, all day Monday and Monday night he has been hallucinating, agitated and hyper active. He's not slept. Only about an hour ago, after taking him out for a walk has he fallen asleep. I called the surgery with the intention to get help, only to be told no appointments available today and to call back tomorrow! I am very disappointed, it has left me worried, anxious and scared. Calling the dementia team at the hospital refers you to a answering machine. I've left a message asking for a return call as soon as possible. I've also left a message with our Alzheimer's support contact. I'll wait to see if anyone calls this morning, if not I'll call the Alzheimer's support line.
 

DennyD

Registered User
Dec 6, 2016
87
0
Porthcawl, South Wales
Hi Canary. I managed to get hold of the dementia team and they kindly contacted our surgery. GP came out and took temperature and his pulse. Observed him for a while and thought it was unlikely to be an infection, he felt it was part of the natural progression. I was too tired to ask questions. It was all so sudden. Contact at dementia team did not understand why no bloods or urine samples were taken. Although GP did say it would be helpful if I can get a urine sample to the surgery. He has prescribed sleeping pills. Dementia team are coming out tomorrow morning and like you, also advised not to hesitate to call for an ambulance if his behaviour is too challenging in the night. After a little food earlier this afternoon I managed to get him back to sleep on the sofa where he still is now. I'll leave him there for as long as possible and will give him a tablet later.
Thanks for replying.
 

DennyD

Registered User
Dec 6, 2016
87
0
Porthcawl, South Wales
My experience has also given me the impression there is very little co-ordination between our drugs for dementia team based at our local hospital and the GP. I do not feel a necessity to contact the GP for guidance and support on dementia progress. I know the GP receives updates on meetings with dementia team, so they effectively keep the GP up to date with progression of my husband's developments. I would however, contact my own GP (different to my husband's) with regard to my caring responsibilities and my ability to manage. I suppose it comes down to your relationship with those who offer to support you and whether you feel comfortable discussing your personal situation and whether you feel you are going to be listened to.
 

Agzy

Registered User
Nov 16, 2016
1,730
0
Moreton, Wirral. UK.
My experience has also given me the impression there is very little co-ordination between our drugs for dementia team based at our local hospital and the GP. I do not feel a necessity to contact the GP for guidance and support on dementia progress. I know the GP receives updates on meetings with dementia team, so they effectively keep the GP up to date with progression of my husband's developments. I would however, contact my own GP (different to my husband's) with regard to my caring responsibilities and my ability to manage. I suppose it comes down to your relationship with those who offer to support you and whether you feel comfortable discussing your personal situation and whether you feel you are going to be listened to.
You mention Dementia team, is that provision usual or only for certain types and levels of progress?
 

DennyD

Registered User
Dec 6, 2016
87
0
Porthcawl, South Wales
The Drugs for Dementia Team is part of the Older Persons Mental Health team at our local hospital. It was the service my husband visited for his initial assessment after referral. After his Alzheimer's diagnosis it's been this team that issue his medication and carry out the cognitive assessment testing (the usual 6 monthly test, although this has not always happened). We don't see them for anything else, but it was them I contacted for help earlier in the week. A nurse visited last Wednesday and after discussion with consultant it was agreed to issue risperidone. Nurse was to come back with them on Thursday, however she phoned yesterday as no doctor available to sign the script, said she would be with us today, but we are still waiting.
 

jenniferjean

Registered User
Apr 2, 2016
827
0
Basingstoke, Hampshire
Don't they check their patient's notes?
I had a telephone call from a nurse at the surgery asking to speak to my husband. I said my husband doesn't take calls and she would have to speak to me. So she asked me to get my husband to phone the surgery. ??????. I then told her that he was unable to take or make calls as he had severe dementia. She said that she didn't have that information and asked how long he'd had it. Unbelievable!
 

Agzy

Registered User
Nov 16, 2016
1,730
0
Moreton, Wirral. UK.
@jenniferjean I too have had this idiocy from GP surgery receptionist and on one occasion recently Pauline was called in so I guided her through the door in and was met with a tirade from receptionist about only one at a time in reception. Eventually I was allowed to wait with her but told she must go in to GP on her own but it threw them when Pauline refused to leave me. They have posters about dementia in the receptionist area but just for show IMHO. Jobs worths!! 😤
 

jennifer1967

Registered User
Mar 15, 2020
1,852
0
Southampton
i got that when we went to a+e BEFORE covid and i was asked to wait in the waiting room. i had to explain he wont know sequence or what tablets he has and if he needs treatment well thats down to me as well. the physio came to the house and gave too complicated instructions so i needed to get her to simplify it and then she asked about his tablets to him. she was with an OT who had assessed his care needs. hes extremely vulnerable and the chemist asked if he could pick my script up. unreal which is what my city council are trying to improve with the scrutiny panel of which ive been a part of. i might say last time she forgot to put her gloves on when my husband as to minimise contact and we wont be seeing kids and grandchildren at christmas as too much of a risk
 

Agzy

Registered User
Nov 16, 2016
1,730
0
Moreton, Wirral. UK.
i got that when we went to a+e BEFORE covid and i was asked to wait in the waiting room. i had to explain he wont know sequence or what tablets he has and if he needs treatment well thats down to me as well. the physio came to the house and gave too complicated instructions so i needed to get her to simplify it and then she asked about his tablets to him. she was with an OT who had assessed his care needs. hes extremely vulnerable and the chemist asked if he could pick my script up. unreal which is what my city council are trying to improve with the scrutiny panel of which ive been a part of. i might say last time she forgot to put her gloves on when my husband as to minimise contact and we wont be seeing kids and grandchildren at christmas as too much of a risk
It would help if those we depend on to treat and prescribe could walk a mile in our shoes to give them a flavour of some of the issues we face but won’t hold my breath on that.
 

DennyD

Registered User
Dec 6, 2016
87
0
Porthcawl, South Wales
Our experiences do show there is something not right. Given there continues to be so much reporting about dementia and its impact both on the individual and their carers/family, you would think that especially in the caring and health sectors there would be understanding. I know it is difficult in a work situation and we cannot be observant all of the time and we cannot meet everybody's needs, but I would expect courtesy and a helpful approach, especially so in healthcare.
 

Kennett

New member
Dec 7, 2020
3
0
I am absolutely appalled at the impression these posts give. Dementia is a well recognised ailment but I am d=getting the impression that there is little help forth coming from the NHS. My wife is getting steadily worse. Unfortunately I do not treat her always with the love and respect she deserves - I am a bit short tempered and she is still a bit "spiky".
What should I do? Where is my first port of call?
 

jenniferjean

Registered User
Apr 2, 2016
827
0
Basingstoke, Hampshire
I am absolutely appalled at the impression these posts give. Dementia is a well recognised ailment but I am d=getting the impression that there is little help forth coming from the NHS. My wife is getting steadily worse. Unfortunately I do not treat her always with the love and respect she deserves - I am a bit short tempered and she is still a bit "spiky".
What should I do? Where is my first port of call?
I've been dealing with my husband's dementia for a few years now and I still get a bit short tempered and I too do not always treat him with the love and respect he deserves. But worry not, we are only human and let's face it we didn't sign up for all this. I can recommend that when it gets you down, do come on here and let off steam. There's always someone who will identify with how you are feeling and that always helps.
As to your first port of call I do recommend that you look locally to where you live and see what dementia related help is available. In fact, any help at all that is offered to you - grab it with both hands and don't be afraid to ask for help.
I'm sure someone will come on here and add links to official lines of help, something I'm not good I'm afraid as I'm not very clever with the internet.
But now you've found us, stay with us. We're the family you need.