discharged from memory clinic

tre

Registered User
Sep 23, 2008
1,353
Herts
I think part of the problem is the name " Memory Clinic" which I know for me gave the expectation that there would be some sort of therapy offered to improve the memory or tips to help the carer deal with the best way to help someone with a memory deficit.
I have seen none of this in our local memory clinic. With my mum who had vascular dementia we were told there is nothing we can offer so we will not see mum again. With my husband with a rare type of Alzheimers ( PCA) they basically just hand us two prescriptions for a toal of six months medication, one for the next three months and one post dated for a further three months and then we are out of the door.
Tre
 

Pudster

Registered User
Jul 29, 2013
24
Braintree
So many comments here that I echo. What shocked me also was the tone set by the consultant in the letter delivering the diagnosis; 'unfortunately suffering from...' well yes it is unfortunate, but the tone implies give up...we have. There was no suggestion of research, local groups to offer a life line and some way forward.
There is now more focus on raising awareness of dementia in local communities, which I think is striding forward, how can we support all people within our communities, however the medical approach is not joining the momentum, from my experience. It has dissected OHs brain, looked in and ignored the rest of the person. Sorry, on a roll now! Just does not compare to the very different service my mum received when being diagnosed with breast cancer. Right from the start she had a folder describing the different types, grades, treatments, contacts and a named nurse and contact number. We walked out of the diagnostic consultation with nothing, then had the diagnosis delivered again by a different consultant approx. 3 months later, which was when I asked for the letter detailing diagnosis.
I just want to regain my positive attitude, support OH to move forward in a way that he would chose and feel supported and nurtured by caring professional services in addition to this great space x
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
It must be quite an unrewarding job being a consultant in dementia. In just about all other fields of medicine a "diagnosis" is step one on the road to treatment or a cure be it; an operation, medication, radiotherapy or whatever, but with most forms of dementia a diagnosis is the end of the road. There are some medications and you can monitor it but ultimately there's nothing you can do except sometimes when you can maybe pass it over to someone else if you believe it is a mental impairment due to another condition like a tumour or thyroid related.
As the NHS cuts kick in (and it will get worse no matter who wins or loses the next election) who do you spend money on?
K
 

Pudster

Registered User
Jul 29, 2013
24
Braintree
Hi Kevinl
I hear what you are saying, but believe that quality of life is equal regardless of prognosis. Consistency would be a good starting point, which I believe has showed to be lacking through this thread, re memory clinic.
Your analogy of a road has been helpful to me. The diagnosis of dementia, from my perspective, has been turning onto a different road, rather than the end of one. However, the road is unfamiliar and without many sign posts! I wonder if dementia just ain't sexy in the neurology world?
In reality perhaps the diagnosis makes little difference, it is the consequences and support surrounding diagnosis that can help us get nearer to where we feel we need to be.
 
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Sammyjo1

Registered User
Jul 8, 2014
194
Following on from comments in here, we've signed up to Join Dementia Research (https://www.joindementiaresearch.nihr.ac.uk/) and have already been contacted by someone from Hammersmith Hospital asking if OH would take part in a research project.

From the sounds of what she was saying, he will get a full memory test and will also be able to ask lots of questions and get information. Somehow I feel they are going to treat him as a human being and not just another checkbox. It will only be for a few visits but at least it's something
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
My mum was seen by our local memory clinic 3 times over two years then mum's doctor continued with the administration of meds - it works very well.

However I did, on a visit with the GP ask about the lack of any contact from the memory clinic over the past year and asked if this was normal - he gave me a shrewd look and said carefully "the system is very busy over there"(sic), doc is a lovely chatty man so I did ask if he meant were they overwhelmed with people to review. He said yes.
I wasn't angry that they do not have time to see my mum who is already "in the system" - just sad that so many need their services.
Perhaps this is the case in so many of the locations that others who have posted on this thread find themselves in?
- Twiddler
 

dunlin

Registered User
Jul 18, 2014
31
Never heard of a 'link worker'?

We have had nothing but advised to go to GP if things change/worsen
Not had any contact other than one visit from a CPN, and the council to see if he needed any services
Just think they have slipped through the system...........
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,737
south-east London
My husband began attending the Memory Clinic in May 2012 (then aged 58). Since then, up until last September he has attended the Memory Clinic every six months - during which time his medication has been discussed / agreed and the memory test taken - showing a slow but continued decline.

Our most recent appointment was last September. We saw a new consultant (the fifth one now in nearly 3yrs!) - and at that appointment we were informed that future follow-ups would be shared between the Memory Clinic and our GP.

It will be interesting to find out if our GP has any clue whatsoever about dementia, because other than referring my husband for the initial tests at the Memory Clinic, the GP has had no contact with my husband about his diagnosis or how it affects him (though, like us, the GP receives a general report on how my husband fared in each memory test and confirmation of what the current level of medication should be.

I don't think it will be much longer before my husband is asked to just see the GP for his 6 monthly assessments. I don't think we'll miss the Memory Clinic at this point - the people there are very nice but to be honest, the visits aren't particularly helpful. The only bonus is that my husband sees it as a chance to get out of the house and have a chat with whoever his latest consultant might be!

In reality I think it is better for my husband to see the GP as I want my husband to have someone who will stick around and be a familiar face and who will get to know him better (rather than dealing with the constant change of staff at the Memory Clinic) - and also because I think I would be more likely to contact our GP rather than the Memory Clinic should we have any kind of emergency.

Having said all that, I must also add I was taken aback at our last Memory Clinic visit. For the first time in nearly three years' of visits, the new consultant actually asked ME how I was feeling / coping! I suddenly felt a bit emotional but just said very quickly that I was coping fine in general. I didn't think that it was the right time to give out any other kind of message - not with my husband sitting there. The last thing I want is for him to think he is causing me any kind of stress or distress.

Still, it was nice to be asked at least - and it may be a sign that the health professionals are more understanding about how things affect the family and carers - and ready to sign-post them to wherever the support is when needed :)
 

Beate

Registered User
May 21, 2014
11,833
London
Only one doctor has ever asked me how *I* was feeling as a carer and I was so surprised and touched that I nearly started to cry. It was a young doctor that I regrettably haven't seen since but I've never forgotten it.
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,737
south-east London
Following on from comments in here, we've signed up to Join Dementia Research (https://www.joindementiaresearch.nihr.ac.uk/) and have already been contacted by someone from Hammersmith Hospital asking if OH would take part in a research project.

From the sounds of what she was saying, he will get a full memory test and will also be able to ask lots of questions and get information. Somehow I feel they are going to treat him as a human being and not just another checkbox. It will only be for a few visits but at least it's something
It's interesting to hear about this. In the past my husband has expressed a wish to take part in research for dementia but I never knew quite how to get into it. I thought the GP or Memory Clinic would ask us at some point if he'd want his name put forward for a particular research project they knew about - I hadn't realised we would have to do the chasing :D

Just out of interest - does anyone know if travel costs of those taking part in research are met by the researching body? Do they arrange transport?

I had a look at the website and couldn't see anything that covered this at all. I am just trying to get a quick idea of how it all works before I mention Join Dementia Research to my husband.

Thanks for any info :)
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Remember not getting much help from our Memory Clinic. Different doctors each time, locums as the very respected consultant had retired due illness (stress??)
When Fred was discharged after a few visits as not being able to be helped, the report to GP recommended a carer's assessment for me as I had said that I was under some stress when asked. It never happened and we had no offers of assistance from anyone until I contacted the AS who put me in touch with our local Care Connect service and Crossroads to buy in a sitter and told me to apply for AA. Even then, things drifted on until my grandson's wife who is involved in care services in another county, contacted her counterpart here and raised a storm, that things started to happen. She and my daughter (her MIL), another forceful personality when she wants to be, then kept their fingers on the pulse with SS and I have to say we had good service from then on, but it shouldn't have to be like that.

Sent from my GT-N5110
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
Not much use here either ! 5 docs in the last 2 years and no regular appointments or checking on meds. We have to chase them up to even get an appointment! No advice or offers of support ! Useless really but can't get meds from GP as they come out of Mental Health, s budget???


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Izzy

Volunteer Moderator
Aug 31, 2003
60,426
Dundee
It's interesting to hear about this. In the past my husband has expressed a wish to take part in research for dementia but I never knew quite how to get into it. I thought the GP or Memory Clinic would ask us at some point if he'd want his name put forward for a particular research project they knew about - I hadn't realised we would have to do the chasing :D

Just out of interest - does anyone know if travel costs of those taking part in research are met by the researching body? Do they arrange transport?

I had a look at the website and couldn't see anything that covered this at all. I am just trying to get a quick idea of how it all works before I mention Join Dementia Research to my husband.

Thanks for any info :)
My husband took part in a drugs trial through the Glasgow Memory a clinic. We had all transport costs covered and we were travelling regularly from Dundee to Glasgow. I know that may be different as the trials are funded by the drugs companies. I would have thought reasonable travel costs would be covered.
 

Sammyjo1

Registered User
Jul 8, 2014
194
It's interesting to hear about this. In the past my husband has expressed a wish to take part in research for dementia but I never knew quite how to get into it. I thought the GP or Memory Clinic would ask us at some point if he'd want his name put forward for a particular research project they knew about - I hadn't realised we would have to do the chasing :D

Just out of interest - does anyone know if travel costs of those taking part in research are met by the researching body? Do they arrange transport?

I had a look at the website and couldn't see anything that covered this at all. I am just trying to get a quick idea of how it all works before I mention Join Dementia Research to my husband.

Thanks for any info :)
Hammersmith will cover travel costs for both of us, including taxis rather than underground, and also put us up in hospital accommodation as we need to be there 2 days at a time.


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LynneMcV

Volunteer Moderator
May 9, 2012
3,737
south-east London
My husband took part in a drugs trial through the Glasgow Memory a clinic. We had all transport costs covered and we were travelling regularly from Dundee to Glasgow. I know that may be different as the trials are funded by the drugs companies. I would have thought reasonable travel costs would be covered.
Thanks Izzy - that's good to know.

I've chatted with hubby and he wants to sign-up - so that's what we've done now. Hopefully he'll find something he can take part in :)
 

Beate

Registered User
May 21, 2014
11,833
London
I have time and time again tried to get John to be accepted for research. They always ask for his MME score and as soon as they hear it, it's curtains down. Apparently only people in the early stages with a healthy score are any use for research. Then again, I don't fancy all the travel hoopla and tests for him anyway, it sounds like a lot of faff every time.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,426
Dundee
We got to that stage as well Beate. All of the trials at the Glasgow Memory Clinic had a minimum MMSE score.
 

Unhappy15

Registered User
Feb 7, 2015
130
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
HelloTre,

I have just found your post. I live in Herts and my husband has just been diagnosed with AD & dementia. We have had some problems but I cannot seem to get any help from the Memory Clinic. Could I ask you who would be a useful contact, all I am told id 'phone 999' when he is having a temper tantrum.

I just feel we have been abandoned, there does not seem to be any care for the carer does there.