Poor Service From The Memory Clinic

Firecatcher

Registered User
Jan 6, 2020
576
0
My Mum was diagnosed with Alzheimer’s in January this year. I’ve mentioned in a previous post that the diagnosis was given by a nurse over the phone and my Dad who is in his 80s was left to break the bad news. I’m still waiting for a response to my lengthy complaint regarding that debacle and there’s been no effort from the service to apologise or make amends. In February my Mum was commenced on Donepezil 5mg. Another nurse delivered the medication and gave little information about what to expect regarding side effects. There was no f contact from the clinic until a further supply of medication was delivered. four weeks later. At that point my. um had began suffering severe leg cramps which the nurse advised was a side effect. Again there was no contact thereafter. My Mum stopped taking her medication a week after this visit as she wasn’t able to tolerate the leg pain. The nurse duly turned up 10 days ago and my Mum informed her she’d discontinued Donepezil but would be willing to consider alternatives. The nurse said she’d have a word with the consultant but since then there’s been nothing. I’m aware there are other Cholinesterase inhibitors including patches which my Mum might tolerate better. I’m absolutely furious about the woefully inadequate service the clinic has offered and really thought they’d offer a better service after my initial complaint and feel that they will probably now use Covid 19 to justify their practice. I also feel by not providing care the clinic are bulldozing me into this role. I am. it in a position to do this and live 3-4 hours away. Just wondered what other people’s experience of memory clinics had been and whether all of this is normal.
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
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The service offered by memory clinics seems to vary from area to area. Mum visited them twice, once for diagnosis and then for a follow up check up 6 months later and was then 'discharged' from the clinic. They provided the initial prescription (for donepezil) and thereafter the medication was just issued via a repeat prescription and there was no further contact from them until 4 years later, following a referral from the GP.

The nurse duly turned up 10 days ago and my Mum informed her she’d discontinued Donepezil but would be willing to consider alternatives. The nurse said she’d have a word with the consultant but since then there’s been nothing.

Is the nurse who visits a district nurse or from the memory clinic? It's possible that the message hasn't been passed onto the memory clinic consultant, or alternatively as the covid-19 situation is causing delays in all areas of the health service at the moment a 10 day wait to hear from them doesn't seem overly excessive. If the nurse is due to visit again could your dad raise it again then, or if you have a phone number or contact email for them could you contact them that way just to check that the consultant is aware that your mum has stopped taking her donepezil?
 

Sirena

Registered User
Feb 27, 2018
2,324
0
My mother was diagnosed about 6 years ago (in London) and I found communication with the memory clinic was pretty woeful. At the initial diagnosis the consultant and CPN disagreed about whether my mother had dementia. Once that was sorted out, they were supposed to arrange an MRI scan, but time ticked on and nothing happened so I chased it up. It was hard to get through on the phone, and I'd speak to someone different each time, who would then promise to action it, and didn't. It was six months before they sprang into action. And after the scan, the consultant rang and told me the diagnosis but I never got any paperwork to back it up.

During the call, the consultant said she thought memantine might be useful for my mother, but first there had to be more hospital tests on her heart/blood pressure, those took nearly a year to accomplish, and it was then decided not to use memantine anyway.

So not exactly a huge success, but fortunately my mother ticked along okay with occasional visits from the CPN, and self-funded care. She's now been in a care home for two years.
 

Firecatcher

Registered User
Jan 6, 2020
576
0
The service offered by memory clinics seems to vary from area to area. Mum visited them twice, once for diagnosis and then for a follow up check up 6 months later and was then 'discharged' from the clinic. They provided the initial prescription (for donepezil) and thereafter the medication was just issued via a repeat prescription and there was no further contact from them until 4 years later, following a referral from the GP.



Is the nurse who visits a district nurse or from the memory clinic? It's possible that the message hasn't been passed onto the memory clinic consultant, or alternatively as the covid-19 situation is causing delays in all areas of the health service at the moment a 10 day wait to hear from them doesn't seem overly excessive. If the nurse is due to visit again could your dad raise it again then, or if you have a phone number or contact email for them could you contact them that way just to check that the consultant is aware that your mum has stopped taking her donepezil?

Thanks for replying. It’s a nurse from the memory clinic visiting my Mum and my parents were unclear whether any further follow up was planned. I do have a phone number for the service but am reluctant to speak to them as I’m absolutely furious with the insensitive way my Mum’s diagnosis was given and am still trying to get a response to my complaint in January.
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
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The NHS complaints process is very slow at the best of times, and I've been informed that it's been suspended since March due to the covid-19 situation, so don't expect a response anytime soon. As difficult as it may be, try to separate your complaint from the current situation if you can, as you'll likely get a better response than going in 'all guns blazing'.
 

Jessbow

Registered User
Mar 1, 2013
5,677
0
Midlands
What are you hoping for as an outcome from your complaint? Given the diagnosis, I'd say its not unusual for NOK to be told, and for them to pass on the diagnosis, unless the person is in the very early stages and might understand.

Do you or your father have POA for her?
Were you expecting that they would tell you - to tell her? or that they would write,to her?
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
Thanks for replying. It’s a nurse from the memory clinic visiting my Mum and my parents were unclear whether any further follow up was planned. I do have a phone number for the service but am reluctant to speak to them as I’m absolutely furious with the insensitive way my Mum’s diagnosis was given and am still trying to get a response to my complaint in January.
My mother-in-law had 3 meetings with the memory clinic, all in the London area. It took 3 months to get an appointment first after the initial memory testing done at home . There were 2 follow up appointments every 6 months then discharge to the GP. She never went back. I wasn't present for the second appointment but as her post was redirected to me, I got the letter confirming next steps from the memory clinic. My experience is that getting diagnosis and appointments was very slow
 

Firecatcher

Registered User
Jan 6, 2020
576
0
What are you hoping for as an outcome from your complaint? Given the diagnosis, I'd say its not unusual for NOK to be told, and for them to pass on the diagnosis, unless the person is in the very early stages and might understand.

Do you or your father have POA for her?
Were you expecting that they would tell you - to tell her? or that they would write,to her?

I’d expect an apology and an admission that breaking the news to my Dad over the phone was extremely poor practice. In my opinion my parents should have been offered a face to face appointment with a doctor and the opportunity to ask questions. They did write a letter which arrived late and the nurse was phoning to check if the’d received the letter. I’m equally appalled that they found it acceptable to write to my Mum as she could potentially have been alone when it arrived. Any other terminal diagnosis would not have been given in this way. My Mum is perfectly able to understand and has said she would have liked this an appointment. It was very difficult for my Dad to explain to my Mum. I wasn’t expecting them to contact me as I’m not a carer and live a long distance away. Both he and I have a POA.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I think most people expect more from the memory clinic.
Generally they see their job and giving a diagnosis and starting them off on medication and thats it.

Mum had an initial appointment where they said there was a problem and sent mum for a scan. There was a follow up appointment a couple on months later where mum got the diagnosis of Alzheimers. She could not have donepezil at that point as her heart rate was too slow, so she was given rivastigmine, but unfortunately it made her very unsteady, so she stopped. A bit later the cardio got mums heart rate better, so mum was re-referred back to the memory clinic and started on donepezil and she was OK on that. Apart from those 3 appointments, mum had no other contact with the memory clinic. If your mum is having visits from the clinic nurse that is more than mum got. I think that in some places you get regular follow ups to monitor the progression of the dementia, but that is by no means universal.

There is generally no advice about what to do, or where you can find help, apart from a fist-full of leaflets. I felt completely at sea, but fortunately, one of the leaflets was about the Alzheimers Society and I found my way to this forum, which has been a godsend. I have discovered that dementia is the cinderella of medicine and if you want something you have to shout loudly and keep chasing things up.
 

Baker17

Registered User
Mar 9, 2016
3,382
0
I must say that our local memory matters clinic has been excellent with us over the many years we have been in contact with them. They also have a Carers group which up until now meets weekly, we have all become friends and organise afternoon tea twice a year as a normal social event. If we have any concerns we just phone them and someone either comes out or refers on to the relevant people. Due to the circumstances we all find ourselves in at the moment we are meeting virtually via zoom and we have all exchanged phone numbers and the CPN phones us to check in with us weekly.
My PWD diagnoses was addressed to them as they were the patient, but I dealt with everything from then on, I don’t have health and welfare POA but this has never been a problem.
Reading these posts it makes me realise how lucky we are to have such a wonderful team to fall back on and the Carers group means I have people at all stages and circumstances to talk to and share our experiences and give or receive advice from.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
I’d expect an apology and an admission that breaking the news to my Dad over the phone was extremely poor practice. In my opinion my parents should have been offered a face to face appointment with a doctor and the opportunity to ask questions. They did write a letter which arrived late and the nurse was phoning to check if the’d received the letter.

This seems to be standard practice so I'm not sure if an apology will be offered. Waiting times for an appointment tend to be lengthy, so rather than keep a patient waiting for the news they call or write.

As @canary has said, there is not much support offered by the memory clinic, this forum tends to be the best source of information.
 

Firecatcher

Registered User
Jan 6, 2020
576
0
This seems to be standard practice so I'm not sure if an apology will be offered. Waiting times for an appointment tend to be lengthy, so rather than keep a patient waiting for the news they call or write.

As @canary has said, there is not much support offered by the memory clinic, this forum tends to be the best source of information.

I’m quite surprised this is standard practice. I’ve previously worked in the NHS and people in my former team were similarly appalled and encouraged me to complain. I also contacted Heathwatch UK and the CQC who were not happy about how the team had dealt with my parents. Perhaps if people were not so willing to accept a poor service then things might improve.