discharged from memory clinic

[Pudster]

My husband was diagnosed with early stage Alz during May 2013. In December 13 he was given a medication review as he had been taking Donepezil at 10 mgs pd for 3 months. During this meeting we were asked if we needed any support. I suggested that it would be helpful if the hospital could let us know, when arranging appointments, what they were for as OHs anxiety is raised with change, particularly if he feels he has little or no control over the outcome or purpose. At the end of the consultation we were advised that the next appointment would be in approximately a year at the memory clinic.
A year passed and no appointment was offered, so we contacted the memory clinic to be told that he had been discharged after the last consultation in December.
I am curious if this is common and if so why? I have looked again at the consultants letter to the GP (which we had to ask if there had been any correspondence) and it does advise that a routine follow up will not be offered.
What are other peoples experiences please?
By the way, this message may come across as calm, but believe me there is a furnace raging!!!

 

[pippop1]

MIL was discharged from the memory clinic after some years of attending every 6 months. At each appointment they measured her blood pressure and gave her the standard test. Her score slowly declined (although sometimes it went up as they "helped" her with the answers).

We saw a psychiatrist on the very first visit who advised us to get POA done v quickly and prescribed medication. All the other times we saw nurses who were lovely but of no help, even when we asked for advice about various matters.

After a few years of this they said she didn't need to come any more or take the test and to just continue with the medication. Her GP could supervise this.

By this time she was v reluctant to go out anywhere so it was almost a relief. Going there was a big waste of time (time off work for us to take her too). Now she is happy in an EMI CH.

I once rung the clinic to ask for a recommendation of a dementia friendly chiropodist. I was advised to look in the Yellow Pages. No suggestions of gadgets or any other tips to help keep her in her own home in all those years. Every time we went I was hopeful but the visit yielded nothing but stress for MIL and us and no positives.

It was always v peaceful there with v little going on and lots of smiling lovely staff hanging around doing v little. What a big waste of NHS funds.

To summarise: totally useless. You are probably not missing much unless your clinic is better.

 

[brambles]

Hello Pudster,

My mum was diagnosed with AD in November. When the psychiatrist visited her to give her the diagnosis we were told she would be discharged and if there were any problems to see her GP.

We had a follow up visit by a CPN a couple of weeks later who told us what support was available and he gave me a phone number to contact him if needed.

I rather think this is what happens now to most people, though some people on this site do talk of having follow up memory tests and medication reviews, so it may be down to where you live.

I was not unduly concerned as should I need help I will phone the CPN or see the GP and ask to be re referred.

brambles

 

[Beate]

I live in London and we see the memory clinic doctor every 6 months or so as they are responsible for prescribing the medication and monitoring how he is getting on. Apart from doing a memory test, they also always ask what help he is getting, what mood he is in etc. They wrote a recommendation in their report last time that he continues Day Care as he benefits so much from it. You can also make an appointment outside of that six month frame if you think it's necessary. I made an appointment when he suddenly declined a few years back and the report helped me get Attendance Allowance for him. You have to use them the way you need to as they do have influence.
It does annoy me when each borough makes their own rules about it!

 

[marionq]

In Scotland we too have six monthly visits with a psychiatrist and regular visits from a CPN to monitor progress and medication. We are always asked when we want the next visit to be and as long as they are helpful - and they are - I will keep taking my husband to the appointments.

 

[Lindy50]

I am sorry to report that my experience has been much like pippop's. Lovely people, no advice, no support.....

I was beside myself for days when the consultant told mum that she was "doing very well for her age" - what on earth does that mean? - and pretty much told her she was fine with my help. So I felt there was no support for mum or me!

It's such a shame, as they are such nice people....... x

As a postscript, it may be that they concentrate on patients who don't have active carers? It's a thought, anyway....

 

[Beate]

I consider myself an active carer!

 

[Lindy50]

I consider myself an active carer!

I have no doubt about that, Beate! I meant that in some areas, perhaps they concentrate on people who have dementia and who don't have (active or not) family carers....there are lots of people in this situation

 

[truth24]

Only advice given to me by Memory Clinic at Fred's last visit, a couple of years ago when I mentioned that he was now doubly incontinent and played with his faeces was that I should get him some rubber gloves With that he was discharged with no further assistance from them or GP. Luckily one of my grandaughters is a carer and she was able to point me in the right direction to get help from outside agencies. Really feel for you.

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[chick1962]

John has follow ups every 6 month with memory tests . Like Beates John he gets his medication from them and not the GP. However in the 4 years he has AZ we have no further help and I am looking after him on my own. We are managing though and John is holding up quite well still. We are still on good/bad days


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[chick1962]

Only advice given to me by Memory Clinic at Fred's last visit, a couple of years ago when I mentioned that he was now doubly incontinent and played with his faeces was that I should get him some rubber gloves With that he was discharged with no further assistance from them or GP. Luckily one of my grandaughters is a carer and she was able to point me in the right direction to get help from outside agencies. Really feel for you.

Sent from my GT-N5110

How uncaring to suggest rubber gloves !!! Quite rude actually


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[Sue123]

My Mum used to go to the memory clinic. I think it was every 6 months.
Like everyone else who has posted here,her appointments were stopped.
I dont feel we gained from going anyway & it always meant me taking time off from work so i lost money just for the privilege!

 

[Spamar]

Yep, memory clinic stopped after about 2 years. I was told it was 'the new system!' If you want to see someone, you have to go to the gp and ask to get referred. Then it changed so that referral was to the 'access and assessment dept'. They come and see you and refer you on to whoever they consider appropriate.
My comments on this lumbering, jobs for the boys system are not printable. Continuity of care? Huh! I'm not sure who wins from this system, but it's not the patient.

 

[canary]

Mum went to a memory clinic, but I think the function of it was to make the diagnosis of dementia and what type it was and to advise of any treatment. They arranged a scan and and started her off on meds, but said that the GP would follow her up, although they would see her again if there were any problems. I dont think they felt anything else was part of their remit.

 

[tre]

We are in Herts and have a memory clinic appointment next week. I have to say in the last two years these appointments have been second to useless but I believe we have to attend as the medication prescription has to happen via the memory clinic. However, I went to an Forum last week where the official from the county council advised that a change is about to happen where we will be able to access the meds via the GP so I wait to see if this will be our last appointment at the memory clinic.
With regard to consultant appointments I have a written confirmation my husband will be seen annually by the consultant but we currently have no appointment and it was a year at the beginning of January since our last one. I intend to raise this when we visit the memory clinic.
A few years back we used to get a proper Care Plan in writing following a visit to the memory clinic. For the past couple of years it has been one line relating only to the medication dispensed. However, out of the blue we were contacted in November 2014 by Serco who wanted to arrange to come to our home to do my husbands annual assessment. I was a bit stunned as he has been diagnosed since Jan 2008 and this has never happened before. However, this was done and about a week later I received through the post a paper resume of the assessment which was very like the care plans we had in the past. I have been told that there is legislation coming into place in March requiring these assessments which would explain why this suddenly occured. Perhaps you will get a similar assessment from Essex instead of having to go to the memory clinic.
I have found our local Alzheimers Society very useful in giving info as to what to expect in Herts. It might be worth your making contact with Essex Alzheimers Society to find out what you should expect.
I am slightly anxious regarding the meds being dispensed by the GP in that I find it very hard to get an appointment for my husband with the GP. They expect you to ring from 8.00am, but this is never a quick call; heaps of hanging on and redialling. In order for mu husband to be ready for the ambulance which takes him to Day Care I have to get up at 7.00am and the ensuing two hours are spent toileting,showering,dressing feeding and medicating him which does not allow any time to try to get through to the surgery.
with best wishes
Tre

 

[Izzy]

In Scotland we too have six monthly visits with a psychiatrist and regular visits from a CPN to monitor progress and medication. We are always asked when we want the next visit to be and as long as they are helpful - and they are - I will keep taking my husband to the appointments.

Our 6 monthly visits only lasted as long as Bill was being prescribed medications for dementia. Once he was taken off these we no longer had any contact. We have only had contact with a CPN in the very early days (almost 14 years ago) when one met weekly with my husband by himself as he was quite depressed then. When that block was finished we had no more contact. I recently asked to speak to one and the GP made an arrangement for one to visit. Sadly I think I knew more about managing behaviour resulting from dementia than she did.

 

[esmeralda]

My husband was referrred to the Memory Clinic after the GP was pressured to do so by our occupational therapist. We waited 5 months for an appointment to spend 5 minutes with a very brusque consultant who simply reiterated the GP's (similarly brusque) diagnosis of dementia.
Nothing whatsoever else offered. I assume this is because there is no medication to help with dementia. I did think they might offer follow up appointments to monitor but having read some of the posts on TP I think we are quite blessed to not be bothered with them.
As for information regarding any support services I think the attitude was the same as that employed by lecturers when I was at university -' **** off and find it yourself'!

 

[Lawson58]

And don't you have to question the value of the memory test?

My husband has done the same one so many times that he knows all the answers off by heart even with his AD! I was told that the rationale for repeating the same test is that gives a direct comparison with previous tests and so is an indicator for the patient's progress.

I know someone with advanced AD who still does very well on the test. And having been a teacher for many years I understand the part that 'practice' plays in using the same tests.

Why do people practice the piano if it is not to improve their performance? And why do people practise, train etc at everything they do if not to improve performance? So I personally think that repeating the identical tests time and time again is a load of rubbish, a huge waste of people's time and money and it is beyond me why they persist with doing it.

 

[Izzy]

Although I hate the test there does come a point where it us impossible to practise. As my husband's dementia progressed it was clear that the score was going down with each 6 monthly test. He remained on more or less the same fairly high score for a long time, then came the decline. There was no way he could practise. He no longer gets the test. I would imagine he would score nil now.


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[marionq]

Have got very mixed feelings about the tests as I could see John's abilities diminishing while the score on the test went up a point or two! The consultant at the Memory clinic however has been very good at listening to the issues and coming up with a solution - always suggesting and never insisting. This includes the kind of medication to help John sleep and to reduce his anxiety. She sends out the CPN regularly and once again the nurse will suggest when she should come back and adjust this to suit me.

Reading posts above it seems that the quality of staff at the clinics is very variable.