Cornwall and dementia

[DougFlo]

I have been told by a friend who lives in Cornwall that everyone who lives in the county and has dementia has an allocated dementia nurse and gets a weekly visit / assessment. Does anyone know if this is the case, as I may be packing up and moving there if this is true.

 

[Earthgirl72]

Hi there, I'm in Cornwall. I look after my Dad who has Vascular Dementia. I'm afraid that that has certainly not been the case with Dad.
We basically had a diagnosis, then nothing apart from a 6 monthly visit from his CPN.
Haven't even had the latest one, as Dad's CPN has moved to another job and her replacement has yet to be appointed.
The hospital is shocking, not one appointed dementia bed, and I have to say that for the most part, Dad's 'care' when he has been admitted has been mainly woeful.

Sorry to burst the bubble. Perhaps it is like that in other parts of the county, but it certainly isn't in West Penwith.

 

[Kevinl]

By "country" do you mean "county" Cornwall, as yet, isn't a country.
Having had a quick read round there's nothing to suggest this is the case, however, local health authorities do have local schemes or it could be Admiral nurses.
There are several things available in the health authority that I live in that aren't available elsewhere but in any part of England I've never heard of such a scheme, but, as always I could be wrong.
K

 

[DougFlo]

Thanks for spotting the typo. Yes I meant county. It sounded too good to be true, but they were adamant that everyone got weekly support.

 

[Spamar]

No, well not up there a couple of years ago. Cousins mil had it. Cared for by family then went into a home. Very little help or outside assistance.
Isn't Cornwall a unitary authority now? It's nice to think of West Penwith or Restormal, but I thought they were now all the same!
Mark you, I think they would like to be a country. I put Cornish on the last census form.....

 

[chick1962]

We live in Kent and husband has an assigned Alzheimers nurse here . The last time we saw her was four years ago . On paper there are a lot of things available but reality is a different matter . Sorry to be a bit negative . Admiral nurses are fantastic though with their help and support .


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[Earthgirl72]

No, well not up there a couple of years ago. Cousins mil had it. Cared for by family then went into a home. Very little help or outside assistance.
Isn't Cornwall a unitary authority now? It's nice to think of West Penwith or Restormal, but I thought they were now all the same!
Mark you, I think they would like to be a country. I put Cornish on the last census form.....

It is indeed a unitary authority, I just still think of it as being Penwith. Old habits die hard I think

 

[oilovlam]

Isn't it a case of wishful thinking. People (almost everyone not at the sharp end) thinks that there is unlimited support....it's only when you need help do we realise how little is available.

It's the sheer scale of the dementia 'epidemic'. Are there 800,000 people with dementia in the UK? If all of those people had the help that was promised then the country would be bankrupt. I suspect in a few well off places in the UK the support is better than elsewhere, it's a post code lottery....but we cannot expect things to change.

 

[Spamar]

Over the 10 or so years I looked after OH, things dropped a lot. Things that were free were charged for, things where a small charge was made suddenly became very expensive. Post code lottery plus less money in council pool, plus let's hit the sick, they won't complain!
Though my friend who recently died of cancer had everything, without cost. Not that I begrudge her, but people with dementia didn't ask for it!

 

[Philbo]

We live in Kent and husband has an assigned Alzheimers nurse here . The last time we saw her was four years ago . On paper there are a lot of things available but reality is a different matter . Sorry to be a bit negative . Admiral nurses are fantastic though with their help and support .


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We live in East Kent and have never had anyone assigned to my wife (PWD). She was diagnosed at the memory clinic in Jan 2014 and discharged back to our GP 2 years later ("as there was nothing more we can do for her").

Any support or advice we have got, has been due to my own endeavours and almost entirely from voluntary/charitable organisations. The exceptions were the provision of pull-up pants by the NHS (which I had to fight for) and a tracker type device (which was via a charitable/KCC partnership).

The adult social care people, on realising we would likely be able to self fund, retreated quicker than a Ferrari with 7 reverse gears!

 

[chick1962]

We live in East Kent and have never had anyone assigned to my wife (PWD). She was diagnosed at the memory clinic in Jan 2014 and discharged back to our GP 2 years later ("as there was nothing more we can do for her").

Any support or advice we have got, has been due to my own endeavours and almost entirely from voluntary/charitable organisations. The exceptions were the provision of pull-up pants by the NHS (which I had to fight for) and a tracker type device (which was via a charitable/KCC partnership).

The adult social care people, on realising we would likely be able to self fund, retreated quicker than a Ferrari with 7 reverse gears!

Oh Philbo that's even worse. You should be able to find an admiral nurse. They are there for you, the carer. They get a carer assessment on its way to you as well as a fire check . They are good listeners and can point you in the right direction to get support. Our Alzheimer's nurse, who is meant to be there for the pwd however is never to be seen. We also have been transferred back to GP as husbands dementia is quite stable at the moment . If things change GP will transfer you back to Mental Health . You must live near us somewhere then as we are also in east Kent , in the marshes


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[Philbo]

Oh Philbo that's even worse. You should be able to find an admiral nurse. They are there for you, the carer. They get a carer assessment on its way to you as well as a fire check . They are good listeners and can point you in the right direction to get support. Our Alzheimer's nurse, who is meant to be there for the pwd however is never to be seen. We also have been transferred back to GP as husbands dementia is quite stable at the moment . If things change GP will transfer you back to Mental Health . You must live near us somewhere then as we are also in east Kent , in the marshes


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My wife has FTD, so not sure we would get a AZ nurse anyway?

I've only met with the admiral nurse once, just after we were discharged back to GP (when I asked the consultant "where do I go for advice then?!). Other people I've spoken to locally say the lady is very helpful but I did not find that to be the case? At the time, I was having problems getting my wife to go to bed and her response was that I should let her do what she wants and leave her downstairs!!! In fact most of her responses were of the "you just have to fit in around what the PWD wants" theme.

Now though, I realise that you do have to adapt, I didn't think it wise to simply pop off to bed and leave my wife sitting in the front room all night (or wherever else she wandered). I have found that gentle persuasion, plus a mix of parent v toddler and parent v stroppy teenager tactics usually get us through the day - lol.

We are in Planet Thanet.

 

[chick1962]

Planet Thanet not that far away . Love Toby,s at Westwood Cross and of course the shopping .

It is all about adapting and re adapting as we can't control the uncontrollable . Like you, I use gentle persuasion, distraction or just let be depending how safe they are. Alzheimers nurses should be there for any dementia really. Always here if you need advice or support


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[Countryboy]

I have been told by a friend who lives in Cornwall that everyone who lives in the county and has dementia has an allocated dementia nurse and gets a weekly visit / assessment. Does anyone know if this is the case, as I may be packing up and moving there if this is true.

I don’t think that's correct however if your friend has a diagnoses of dementia and wanted to continue in their employment then maybe it could be true if they required support from an OT to attend meetings with their Managers Personal or HR as it’s called now Unison Reps , Occupation Health there are quite a few challenges to face if you want to continue working and the OT support probably could continue through out your working period ( as it did in my case it was for 8 years staring monthly then 3 monthly until my retirement) obviously my support dropped off to twice a year after my retirement and now only once a year But I’m not sure it only happens in Cornwall though

Sorry only just seen this thread

 

[susanandliam]

I have been told by a friend who lives in Cornwall that everyone who lives in the county and has dementia has an allocated dementia nurse and gets a weekly visit / assessment. Does anyone know if this is the case, as I may be packing up and moving there if this is true.

Well I'm not sure who told you that?! Unfortunately there's very little support down here and what there is is very spread out. My mum has Alzheimer's and she moved from Hertfordshire to a care home in Cornwall . There was one admiral nurse for the whole of the county but I was told last year that she left and now there's no replacement!!

 

[Countryboy]

Hi I think the support for a person in a care home is totally different than a person in mid fifties with 10 years off retirement the OT’s are there to support that person to continue in employment and Yes I had such support for eight years plus Local Alzheimer’s Soceity Office in Cornwall know now this also the OT’s and medical team who gave me support ok i have been retired now for 10 years
I would assume a person in a care home has support 24/7

just found the attached