• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Cuts hitting home

bigtom

Registered User
Sep 19, 2009
625
76
bolton lancs
A month ago i had a phone call from my wife Sylvias consultant, telling me she had been to visit Sylvia in her care home, and that she was sorry to see that syl had gone down so much, then she said she was withdrawing the Reminyl and Lorazepam as she thought they where not doing anything for syl now. I later found that other sufferers had also had there meds withdrawn:eek: Today i went to visit Syl the Home manager ask me if i had i minute and informed me syl was also haveing her Enshure drinks taken away, as syl does not eat very well these are very important to her wellbeing, i asked why and was told the P.t.c had visited the home and it was now up to them to meet syls dietary needs:eek: I see this as vandalism by the powers that be against dementia sufferers as though they don"t matter let them starve to death. When the goverment have announced they will pay for the obese to go to weight watchers, to me this just not seem fair:confused: Sorry for the rant but i had to let people know what is going on:mad:
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello BigTom:

Not sure if I understand this properly. My husband's Nursing Home are responsible for his nutritional needs. They would provide Fortisip or whatever if needed - this is covered by payment of his care fees.

If I had to buy extra supplements to help my husband along then I would do so, after all I am not paying for his food at home although I wish that was so.
 

robertjohnmills

Registered User
Nov 16, 2008
225
63
Bexley in Kent nr London
No surprise

Its all about money and nothing to do with quality of care anymore. Cheapest is best for the healthcare providers! We are locked in a battle over care provision and have just been forced to take a 20% cut in care. In addition they have told us they will take us to Court to obtain £6,000 in arrears that we were not even aware we had been responsible for.
Quite frankly it stinks, this country is going to the dogs and this current government is no better than the last at making a lot of rhetoric with absolutely no substance.
You have my sympathy but fight on...... I am :D
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
I doubt for one minute (milli-second even) Tom is suggesting he would not purchase these ‘products’ for Syl if he needed to and funding was withdrawn by the care home .... the point is (I think) these supplements are often by prescription and part of holistic welfare and indeed supporting medication (as they were for my mum at certain points).

The question is, where is withdrawal about ‘cost savings’? Where is withdrawal about ‘these medications/supplements’ no longer promoting any quality of life?

It is so hard to understand the whys and wherefores at the moment in certain situations ..... Tom, I know you have just ‘rejoiced’ at Syl’s home being found a new owner ... and you know it is of great concern to me that homes/LAs/PCTs are trying to pass budgets from pillar to post ...... to think it includes basic nutrition – well – stunned ......to be honest .....

Is it only us in this area being ‘hit’ so hard?????? I can’t believe other care homes throughout the country (private or otherwise) are not being ‘stung’ as hard ??????? Or maybe those people affected are just not so vocal on TP - or not so aware of how cuts are being made? :rolleyes:

Big hug, deep breath ...... Kaz, x
 
Last edited:

PatH

Registered User
Feb 14, 2005
301
76
N.Ireland
My husband's daily diet consists of Fresubin and juice. The Fresubin is ordered by prescription and not the responsibility of the NH.
Big Tom , at a point in time my husband's medication was also withdrawn on the same grounds as your wife, it was frightening at first but it was obvious that the meds were no longer having any effect. How do you find your wife now that she has been off the medication for a month? Pat
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
I would fight this decision Tom (I will help you all I can if you want). Actually I doubt if the PCT exists at the moment as they are in the process of becoming another body. All this is very complicated because half way through dfsmantling PCT's the Government halted midway durimng the change over to Consortiums- so I doubt if anyone, even in the health services AND the PCT actually know where they stand and are fully up to date. There have been so many chops and changes to PCT's this last year or so!

My mother was given this fortifying drink on the NHS so why has Slyvia's been stopped?

Please PM me or phone me Tom and we will get this sorted out for Sylvia.

xxTina
 

JPG1

Account Closed
Jul 16, 2008
3,396
Is it only us in this area being ‘hit’ so hard??????
Oh no, it is not only your area that is being hit so hard. It is so widespread now, that it is almost beyond understanding.

The perceived problem, as far as the fatcats are concerned, is that these drinks cost almost as much as the measly care home ration per person per day. OK, let's be very very generous and allow £3 per day.

Not too much to ask, when you're paying about £500 - £800 or more per week, is it?

Especially when you can't swallow solids, perhaps.

Tom, it will come as absolutely no consolation to you, but I know of a care home where the GP would not provide basic diabetes testing kit, the care home fatcat provider would not provide basic diabetes testing kit, the local authority would not provide basic diabetes testing kit - so the residents never had their diabetes monitored. Result? A diabetic coma in one resident, because they didn't know their a..e form their elbow! And the cost of a few trips to Boots the Chemist was too much to ask.

People may scratch their heads and say "never, never, never - that couldn't happen in this rich country of ours, in this enormously caring country of ours". Send them my way and I'll show them that it does happen in this rich country of ours.

Wish you well, Tom - go kick ....!
 

bigtom

Registered User
Sep 19, 2009
625
76
bolton lancs
Hi Jan, syl is on nhs continuing care, and the drinks were by prescription from her GP she has had them for the past 2 years as they where so important to her at times she just would not eat, but if she needs them i will supply them myself.
 

bigtom

Registered User
Sep 19, 2009
625
76
bolton lancs
Thanks JPG1, I am also certain this is widespread also. AS the care home manager said this is only the start things will get much worse :eek: