The Memory Clinic is a Joke!

[camkam]

Has anyone here had any dealings with MODERATOR NOTE: NAME OF HEALTH AUTHORITY REMOVED Memory Clinic? Mum had her initial assessment in July, her GP tried to get her appointment rushed through because she was deteriorating so we got the appointment after six weeks! Today having heard nothing I rang to see if there was any news of the results and was told that it would be four months from the date of assessment! When I questioned it I was told by a lady who had about as much personality as a plank of wood, that they cover a very large area and that's the way it is. I said that Mum was getting worse and was told 'that's not our problem we only deal with the assessment'.

Ironically on their website the first sentence reads "The Memory Assessment Services across ... aim to deliver quick and timely diagnosis to people whose symptoms suggest that they may have dementia".

I'm speechless.............

 

[Grey Lad]

Has anyone here had any dealings with ...Memory Clinic? Mum had her initial assessment in July, her GP tried to get her appointment rushed through because she was deteriorating so we got the appointment after six weeks! Today having heard nothing I rang to see if there was any news of the results and was told that it would be four months from the date of assessment! When I questioned it I was told by a lady who had about as much personality as a plank of wood, that they cover a very large area and that's the way it is. I said that Mum was getting worse and was told 'that's not our problem we only deal with the assessment'.

Ironically on their website the first sentence reads "The Memory Assessment Services across ... aim to deliver quick and timely diagnosis to people whose symptoms suggest that they may have dementia".

I'm speechless.............

Never heard anything like it. My O H always got a diagnosis on the day following visits to the Memory Clinic. I don't understand what is going on in your neck of the woods.

 

[banger696]

I know exactly how you feel we are in the same boat, we were promised an appt. 4 weeks ago then a memory nurse would visit mum as she is not very mobile, heard nothing since.

 

[Beate]

Took us almost six months from first going to GP to Memory Clinic appointment to further tests to diagnosis appointment.

 

[AndyL]

Agree with you totally. My mum had an assessment , followed by a brain scan in July. We had a letter saying there was nothing untoward on her scan, so she thought that there was nothing wrong, but is on a sharp downward spiral and does not believe the house she has lived in for over 50 years is her home and keeps asking to go home. I have phoned the memory assessment people lots of times and left messages, they never phone you back - are they the ones with memory problems �� finally spoke to someone, who said that Mum was 12th in the queue and would probably get a follow up appointment November time.. Said that this wasn't really good enough and could we get something sooner as she is distressed, depressed and thinks she's going mad. Put her on the cancellation list and still not heard anything. Unfortunately as we have no diagnosis it is very hard to get anything put in place for her, she very rarely leaves the house as she doesn't know where things are as this is not her house, so relys on me to go round each day, rarely cooks, or remembers to eat. It's all very sad and I feel sorry for her as she has always been very independent. Fingers crossed that we all get better service soon.
AndyL

 

[Kevinl]

Having thought about this for 10 minutes camkam what are you expecting from the visit to the memory clinic, they won't supply any physical help this will come as a result of a Social Services doing an Adult Assessment and you can request this without a diagnosis.
You simply contact the local social services and report her as a vulnerable/at risk adult. It's the SS who will offer any help available and you can self refer for this with or without a diagnosis and it's them who'll supply any help. All the memory clinic will do is give you a confirmed diagnosis, if you ask them what help is available they'll just tell you to contact the SS which you can do now anyway.
K

 

[camkam]

Having thought about this for 10 minutes camkam what are you expecting from the visit to the memory clinic, they won't supply any physical help this will come as a result of a Social Services doing an Adult Assessment and you can request this without a diagnosis.
You simply contact the local social services and report her as a vulnerable/at risk adult. It's the SS who will offer any help available and you can self refer for this with or without a diagnosis and it's them who'll supply any help. All the memory clinic will do is give you a confirmed diagnosis, if you ask them what help is available they'll just tell you to contact the SS which you can do now anyway.
K

In that case I think I've been given the wrong information by quite a few agencies. The GP originally requested the memory clinic assessment, at the same time she asked Social Services to come and do an assessment. They did so but decided that Mum didn't need any help (based on Mum answering their questions - she says she's fine, doesn't need any help, can manage etc., etc.,) but they did suggest extra care housing however when the SS guy went back to his office he discovered that in order to qualify to go on the waiting list for extra care housing Mum must be receiving 4 hours care in the home, which she is not. Incidentally Mum absolutely refuses to move from her home so the extra care housing is a non-starter anyway. He then told me that there was nothing more he could do until she received a diagnosis from the memory clinic. I feel like I'm going round in circles!

 

[Beetroot]

This is appalling. We waited two months for the first assessment - end of April, then seen by a clinical psychologist at end of May for their tests and then waited until 10 August for an appointment with the consultant psychiatrist who gave the diagnosis. Tests are to be repeated in Novemeber and she's seeing the psychiatrist again then. I felt it was a long wait.
While all this was in train, I did contact various local help and found they were willing to help before diagnosis, but having the diagnosis makes life a lot easier, particuarly filling out the attendance allowance form.

 

[sue38]

Can I remind members that the naming of health authorities on the forum is contrary to our Terms and Conditions

2.3 The naming of health or care providers, legal services and/or their individual staff is prohibited, with the exception of posters who have sought prior permission to do so from Alzheimer’s Society. In all other circumstances, Alzheimer's Society aims to remove such references, but has no obligation to do so.

 

[camkam]

Can I remind members that the naming of health authorities on the forum is contrary to our Terms and Conditions

I consider myself reprimanded, thanks for your pm I just didn't know where to turn for advice. Sorry Kevin, I got you into trouble too

 

[camkam]

This is appalling. We waited two months for the first assessment - end of April, then seen by a clinical psychologist at end of May for their tests and then waited until 10 August for an appointment with the consultant psychiatrist who gave the diagnosis. Tests are to be repeated in Novemeber and she's seeing the psychiatrist again then. I felt it was a long wait.
While all this was in train, I did contact various local help and found they were willing to help before diagnosis, but having the diagnosis makes life a lot easier, particuarly filling out the attendance allowance form.

Thank you I'll try speaking to Social Services again tomorrow.

 

[canary]

Even with a diagnosis it can be difficult to get SS to agree to to help if your mum insists that she is perfectly well, has no problems and doesnt want any help

If you are going to be self-funding I cant see why the care agencies are refusing. Sometimes you can get carers in by stealth - describing them as "cleaners" etc, though I must say that it never worked for my mum, she steadfastly refused anyone coming in until eventually she went into a care home.

 

[1mindy]

Not sure if is just me but when OH went to the memory clinic following his scan ( dementia with changes I the brain suggestive of Alzheimer's. ) we didn't ever get anything more. Since then he has refused to go its a waste of time apparently .

 

[Beetroot]

Since diagnosis, our area gives you a "post diagnositic appointment" which points you in the direction of help various locally. You also get a "dementia navigator" meeting with someone from the Alzeheimer's society which covers different things apparently....- that's booked, but it's not until next month.

 

[Bree]

Same old story, postcode lottery then !

 

[CynthsDaugh]

The inital appointments and diagnosis for my Mum happened fairly quickly (once my GPs realised they'd faxed the request to the wrong number!), and after that someone came out to see us and talk us through other help available, I was actually very impressed (at the time)!

After that I've had a letter arrive advising of appointment the next day (too short notice to arrange leave from work). OK I accept some might be grateful for that quick an appointment but there was no way I could take Mum.

Twice the memory clinic have faxed new prescriptions to my GPs and not informed me having said they would (so I didn't know they were there).

Have to take a full list of medication every time, they don't seem to keep a record to hand.

Numerous un-returned phone calls.

CPN who thought it was hilarious that she was an hour and a half late to visit Mum at home due to getting lost (my place isn't that difficult to find), even said to me 'are you at work this afteroon?' at 1pm, and continued chatting to us both for much longer than necessary to assess Mum, nearly making me late for work.

I feel for people with Dementia who have to contend with this themselves!!

 

[SitsThere]

Sad to say, I think that lots of people are under the illusion that going to the memory clinic or getting a confirmed diagnosis of dementia will lead to some sort of intervention which will improve the situation of the person with dementia and/or those who look after them. In our experience this is not at all the case. It's now a year since our mum was formally diagnosed and not only have we never heard from the memory clinic again, but there has been no follow-up of any kind from anyone in the NHS other than to keep her Aricept prescription going. We have not seen a GP for 15 months and the only personal medical attention mum gets now is from the district nurse when she cuts her arms or legs and needs bandages.

What the memory clinic and the diagnosis achieves is really just this:
- it allows the Health Authority to tick a box about time taken to reach diagnosis
- it confirms to the family (though not to the person concerned) that what is going is indeed dementia, a terminal illness, and it will be their job to handle it for the rest of that person's life. This, in effect, is what a very kind lady at the Memory Clinic told me (on the phone) a year ago when I asked her What Next ?

It would be helpful to all concerned if GPs could be quite direct and honest about these
facts. It took us months to work this out but we've got over it now and don't look for, or expect, any help from the NHS or Social Services, especially since mum is self-funding.

 

[Kevinl]

The inital appointments and diagnosis for my Mum happened fairly quickly (once my GPs realised they'd faxed the request to the wrong number!), and after that someone came out to see us and talk us through other help available, I was actually very impressed (at the time)

I'm in the same LA as Cynths and I too think it was all handled very speedily both a few years back with my Mum and more recently with my wife, GP, MRI scan, memory clinic, SPECT scan and diagnosis all in about 6 or 7 weeks.
As has been said by others after that it all stopped doing anything just the 6 monthly visits to the clinic.
They've done nothing since but at least they did nothing quickly.
K

 

[Pickles53]

Sad to say, I think that lots of people are under the illusion that going to the memory clinic or getting a confirmed diagnosis of dementia will lead to some sort of intervention which will improve the situation of the person with dementia and/or those who look after them. In our experience this is not at all the case. It's now a year since our mum was formally diagnosed and not only have we never heard from the memory clinic again, but there has been no follow-up of any kind from anyone in the NHS other than to keep her Aricept prescription going. We have not seen a GP for 15 months and the only personal medical attention mum gets now is from the district nurse when she cuts her arms or legs and needs bandages.

What the memory clinic and the diagnosis achieves is really just this:
- it allows the Health Authority to tick a box about time taken to reach diagnosis
- it confirms to the family (though not to the person concerned) that what is going is indeed dementia, a terminal illness, and it will be their job to handle it for the rest of that person's life. This, in effect, is what a very kind lady at the Memory Clinic told me (on the phone) a year ago when I asked her What Next ?

It would be helpful to all concerned if GPs could be quite direct and honest about these
facts. It took us months to work this out but we've got over it now and don't look for, or expect, any help from the NHS or Social Services, especially since mum is self-funding.

This was almost exactly our experience of the memory clinic. Waited five months for appointment, three months after CPN administered memory test at mum's home and she had CT scan etc. Prescribed Aricept, after one week she was unable to sleep, stopped on advice of CPN and nothing further suggested. No response from GP to diagnosis at all. Next appointment would have been a year later but mum died before we got there.

So agree with your last paragraph. I expected naively that things would start happening once we got to the memory clnic but nothing did. If I'd realised from the outset I would have wasted less time! SW was at least honest when I arranged a meeting; mum's needs not sufficient for them to get involved especially as mum was self-funding. (At least that meant we never had to argue with them when we decided mum would need to move to a care home.)

 

[Mrsbusy]

In our area took six months to see the memory clinic, another three months for a scan to be arranged and another two months to get back to the doctor at memory clinic to discuss scan results so six months in total! Then the GP didn't do all the blood tests he was asked to but by this time I'd given up as I already knew the outcome! Never heard from them since and GP never seen mum since to discuss it etc,