Seeking private consultation following delayed Memory Clinic

[longstone]

Hi all

I've moved across the country to support my dad, who is clearly starting his journey into dementia (though other causes for his cognitive decline haven't been ruled out). After getting him to a GP in August, we secured a referral to a Memory Clinic with an appointment in November. I was all set to take him that morning when a call came through that it had to be cancelled due to illness of the nurse. Of course, the call came through to Dad! So there was a lot of back and forth and phone calls to figure out that it actually was cancelled, since Dad wasn't making too much sense and we couldn't read his hand writing!

Given his behavioural issues - getting a little more confused, bored, more emotional - we'd really like to get a diagnosis so we can have some more professional support. We haven't had another appointment letter come through yet and I'm guessing it might be another couple of months if the previous timings hold; but it could be longer given that we're heading into winter now.

I'd like to consider getting a private consultation. Does anyone on the forum have experience of this? I'm not that experienced with mixing public/private healthcare - will our GP and local NHS move forward with (preusmably) tests/care/follow ups on the basis of a private diagnosis? Do I need to make sure the diagnosis is from a consultant with a particular specialism? I think we can afford the appointment - which I'm guessing will be a few hundred pounds - but I assume a key step will be a physical scan, which the NHS should be able to do (and presumably will be astronomically expensive if it's an MRI!).

I'm basically aiming to speed up the process so we can get access to support. Dad has always been the carer for Mum and she's not coping well. They live in an area where public transport isn't great so he's always driven, so she's anxious about having the car 'taken away' and so on. Anyway, it's complicated, and these things always are! Last night I was explaining to Dad - the same man who bought me my first computer in the late 1980s, and who worked in engineering - what the coloured circles at the top left of the window meant on his Mac. He was making notes but he won't be able to understand them.

With best wishes

Ian

 

[canary]

Hello Ian @longstone

You can get private consultations for memory problems and you would need a referral from your GP, but you are right - it would require a scan - probably an MRI

Also, I suspect that you want an early diagnosis because you feel that your mum needs help and support. Your comment about GP and NHS tests/care/follow up made me think that this is what your mum needs, but unfortunately, made me give a hollow laugh. When mum was diagnosed with Alzheimers she was given the diagnosis and after she had been started on medication she was discharged back to the GP. I left with a fistful of leaflets and that was that. Neither the memory clinic nor the GP was interested in anything further on a routine basis.

Unfortunately, the problems that you get with dementia (of any sort) are considered "social needs" not "health needs", so the NHS is not interested. There is support out there (even without a diagnosis), but no one will automatically come - you have to look for it yourself.

The first thing is to identify what help and support you need. Does your dad need help with washing and/or dressing or need someone to supervise meds taking? Does your mum need someone to sit with your dad so that she can have a break? Does she need help with housework? Want to meet up with other carers? All of these things can be done without a diagnosis. You can also apply for Attendance Allowance without a diagnosis, which will bring in a bit of extra money - useful because, you see, unless you are in Scotland, care is means tested. I would also recommend that you contact your local Carers Organisation who usually have a great deal of knowledge about what it available locally and can guide you through the maze that is social support.

 

[longstone]

Hello Ian @longstone

You can get private consultations for memory problems and you would need a referral from your GP, but you are right - it would require a scan - probably an MRI

Also, I suspect that you want an early diagnosis because you feel that your mum needs help and support. Your comment about GP and NHS tests/care/follow up made me think that this is what your mum needs, but unfortunately, made me give a hollow laugh. When mum was diagnosed with Alzheimers she was given the diagnosis and after she had been started on medication she was discharged back to the GP. I left with a fistful of leaflets and that was that. Neither the memory clinic nor the GP was interested in anything further on a routine basis.

Unfortunately, the problems that you get with dementia (of any sort) are considered "social needs" not "health needs", so the NHS is not interested. There is support out there (even without a diagnosis), but no one will automatically come - you have to look for it yourself.

The first thing is to identify what help and support you need. Does your dad need help with washing and/or dressing or need someone to supervise meds taking? Does your mum need someone to sit with your dad so that she can have a break? Does she need help with housework? Want to meet up with other carers? All of these things can be done without a diagnosis. You can also apply for Attendance Allowance without a diagnosis, which will bring in a bit of extra money - useful because, you see, unless you are in Scotland, care is means tested. I would also recommend that you contact your local Carers Organisation who usually have a great deal of knowledge about what it available locally and can guide you through the maze that is social support.

Many thanks for your reply! Apologies for not replying earlier. These are all super useful ideas and I'll follow up with them - your comment about these being social needs rather than health needs gave me a chill, but we'll see how we get on. Thanks again

 

[Angel55]

Hi

Sadly it is true. The only support we have had following his diagnosis is a few leaflets sent through from the memory clinic. Dad is on medication which may help but he is living in a care home and has been for nearly a year after a crisis point Dad lived alone though which is different and we managed ourselves for a long time until a crisis came. Ours is a complicated story.

An MRI and then the memory clinic did some testing with Dad separately initially stating it was mild cognitive impairment which we disputed and carried on saying the same things.... Not sure how common our experience is as we began noticing things in 2019 just before the pandemic so everything got held up and Dad got worse during those first couple of years but we still managed somehow.

We sourced things ourselves. Without a diagnosis you can still look at care options like cleaning, gardening other support if you are self funding, attendance allowance and all those sorts of things, If you need things like grab rails and aids we did a lot of that ourselves initially and then had an OT referral through the doctors surgery, carers clubs, meals delivered, befriending services and things like that you can access without a diagnosis , you can speak to an admiral nurse by booking on line or ring the helpline for advice. Some things we paid for ourselves to be honest. We also had LPAs in place for Dad which helped.

One of the challenges is sometimes the person who may not want or see that they do need help.

My personal tips are be politely and firmly persistent, keep notes and examples of things that happen as it is easy to forget when you are in a meeting with a professional person. Try and talk to your parents and find out what help is wanted or needed.

I wonder sometimes why it is so very difficult. Come back and let us know how you get on though maybe your experience will not be as challenging.

 

[longstone]

Hi

Sadly it is true. The only support we have had following his diagnosis is a few leaflets sent through from the memory clinic. Dad is on medication which may help but he is living in a care home and has been for nearly a year after a crisis point Dad lived alone though which is different and we managed ourselves for a long time until a crisis came. Ours is a complicated story.

An MRI and then the memory clinic did some testing with Dad separately initially stating it was mild cognitive impairment which we disputed and carried on saying the same things.... Not sure how common our experience is as we began noticing things in 2019 just before the pandemic so everything got held up and Dad got worse during those first couple of years but we still managed somehow.

We sourced things ourselves. Without a diagnosis you can still look at care options like cleaning, gardening other support if you are self funding, attendance allowance and all those sorts of things, If you need things like grab rails and aids we did a lot of that ourselves initially and then had an OT referral through the doctors surgery, carers clubs, meals delivered, befriending services and things like that you can access without a diagnosis , you can speak to an admiral nurse by booking on line or ring the helpline for advice. Some things we paid for ourselves to be honest. We also had LPAs in place for Dad which helped.

One of the challenges is sometimes the person who may not want or see that they do need help.

My personal tips are be politely and firmly persistent, keep notes and examples of things that happen as it is easy to forget when you are in a meeting with a professional person. Try and talk to your parents and find out what help is wanted or needed.

I wonder sometimes why it is so very difficult. Come back and let us know how you get on though maybe your experience will not be as challenging.

Thanks, Angel55 - that's really helpful. I'll need to roll my sleeves up and crack on...

 

[Fugs]

I am a bit late on this thread, but I do have experience of mixed NHS and Private.
In early 2022 I was becoming increasingly concerned about my OH. After months I gave up on the NHS GP route as it was near impossible to make an appointment, and had a Private GP appointment. We then had a Private MRI scan (nothing seen, but not uncommon in the early stages of Early Onset) We were then referred to a Psychiatrist (Private) for depression. The Psychiatrist was then the first person to spend more than 5 minutes talking to; both of us; to me by myself; and then a series of cognitive tests for my OH. The Psychiatrist diagnosed Alzheimer's. (Over a thousand, so not cheap)
Then referred back to the Private GP, who referred us unto the NHS Old Person's Mental Health team. First appointment with the Consultant he said that he didn't know why the Psychiatrist was diagnosing Alzheimer's, as he couldn't see it from talking to my wife. Then an NHS PEC-CT scan and a home visit from a domestic skills assessment team. - yep Alzheimer's on the boundary between Mild and Moderate.
A long tail, yes you can mix NHS and Private, but it does cost money and persistence.

 

[longstone]

I am a bit late on this thread, but I do have experience of mixed NHS and Private.
In early 2022 I was becoming increasingly concerned about my OH. After months I gave up on the NHS GP route as it was near impossible to make an appointment, and had a Private GP appointment. We then had a Private MRI scan (nothing seen, but not uncommon in the early stages of Early Onset) We were then referred to a Psychiatrist (Private) for depression. The Psychiatrist was then the first person to spend more than 5 minutes talking to; both of us; to me by myself; and then a series of cognitive tests for my OH. The Psychiatrist diagnosed Alzheimer's. (Over a thousand, so not cheap)
Then referred back to the Private GP, who referred us unto the NHS Old Person's Mental Health team. First appointment with the Consultant he said that he didn't know why the Psychiatrist was diagnosing Alzheimer's, as he couldn't see it from talking to my wife. Then an NHS PEC-CT scan and a home visit from a domestic skills assessment team. - yep Alzheimer's on the boundary between Mild and Moderate.
A long tail, yes you can mix NHS and Private, but it does cost money and persistence.

Thanks, Fugs - that sounds tough, particularly given that you had a difference of opinion in diagnosing your wife. I guess we're 'lucky' in that Dad's cognitive impairment is quite striking, and he is of an age where it's fairly common. We've also had a bit of luck in that the local memory clinic have had a cancellation and I'll be able to to take him to an appointment in January - so in the end, the dealy would be only 2 months. Before that, though, we'll probably have him get a brain scan privately. The journey continues... Thanks for writing, and I hope things are going as well as can be expected for you.