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Advice: Best Interest Meeting

Sparkly

New member
Sep 26, 2020
1
My Mum is having a best interests assessment because she wishes to come home but is currently in a nursing home as she was assessed some months ago as being in need of very rapid decline end of life care after a serious illness. She has now recovered substantially and wishes to come home but the nursing home do not wish to release her into my care. I have an LPA and my mum is noted as an objector and does wish to come home but is classed as not having capacity to make comolex decisions relating to her care. Any help or advice for how to deal with this procedure would be greatly appreciated.
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,047
69
Dundee
Welcome to the forum @Sparkly.

I’m sorry to hear about your difficulties. It might be helpful to talk to someone on the Dementia Connect Support LIne -


I’m glad you‘ve found the forum as you will get lots of help and support here.
 

Louise7

Registered User
Mar 25, 2016
2,467
Welcome to the forum @Sparkly It's a difficult situation for you but the purpose of the best interests meeting is to make a decision that is right for your mum. Are deprivation of liberty safeguards (Dols) in place to prevent your mum from leaving the home? As your mum is deemed to not have capacity to make the decision herself as to where she should live, assuming that you have Health & Welfare LPA then you should be involved in the best interests meeting/decision making - what decision do you feel is best for your mum? Why does the nursing home not want to release her into your care - have they explained this? I think that ultimately if the home/social services feel that your mum should remain in the home for safeguarding reasons then the matter will have to go to the court of protection.

If you want your mum to go home then during the best interests meeting you will need to explain why you feel that this will be best for her, how the home environment would be safe for her and what level of care would be put in place to replace the care that is currently being provided by the nursing home. If your mum's care is being paid for by the local authority then they will obviously have a say with regards to what level of care can or can't be provided to your mum if she returned home. Apologies for all the questions but it would be helpful to know a bit more about the situation. but as @Izzy has advised, it's quite a complex situation so a chat with the Dementia Connect supportline might be helpful for you.
 

Bod

Registered User
Aug 30, 2013
1,336
What does she require to be done for her now, at the Nursing home?
Should she go home, who will do these things for her?
Is the house suitable, or can it be adapted?
DO NOT underestimate the amount of work/hassle that will come your way, should she come home.
"I want to go home" is very common with Dementia sufferers. Often it means a place or a time when they felt safe. A childhood home, or very often an imagined home.
Many a well-meaning relatives have been taken by this, only to find they really couldn't cope with the reality of Dementia.

Bod.
 

Nikkifrommars

Registered User
Sep 27, 2020
12
Hey all. So to give a bit more background. I am the representative for Sparkly and her Mum with Social Services and other appropriate support for her Mums best interests. Sparkly has looked after her Mum as sole/primary carer for many years until she had severe pneoumonia and was classed as end of life. Her Mums dementia needs have not altered significantly, though lack of in person contact has causee her to suffer depression and not eat etc. Prior to this the care home etc were not even providing food, but as Sparkly was able to visit her mum constantly at the time, and was basically providing all the care that her Mum needed whilst the home did not.. Sparkly brought her mum back from the brink and she has recovered substantially.. she wishes, as she always has to return home. Sparkly wishes to provide her Mum appropriate care at home, and realises the difficulties involved as her mum has always been demanding in terms of what she needs/wants.. however the nursing home, although nowhere near providing the level of care appropriate (and I have worked in care of all types including dementia care for over 30 years now).. are charging excessively for care provided to the LA (local authority).. they are paying approx 1400 per week, on the basis that they claim she is getting 17.5 hours per day of 2 person care.. whereas in actual terms she has several few/15 mins at most interventions througout a day.. frequently her buzzer is placed out of reach or is ignored.. but as funding was approved (begrudgingly) they do not want to give it up.. as normally would recieve maybe a 3rd of that per resident with same care needs.. any advice re what we actually need to address legally would be beneficial as representing at this level is new to us.. however.. any judgement regarding what care her Mum needs.. we are well aware.. and was all provided and would be.. whatever was neccessary.. as it is the care home.. do not get mum out in chair but leave in bed most days.. do not put through phone calls for sometimes days.. do not provide suitable or adequate food in spite of mum having a high MUST level score (she weighs less than 6 stone.. and has a high risk of not eating/dying.. which they do nothing to encourage nutrition.. ) when in contact with daughter she will eat happily.. but requires much encouragement.. the home does not..
 

Louise7

Registered User
Mar 25, 2016
2,467
any advice re what we actually need to address legally would be beneficial as representing at this level is new to us..
Welcome @Nikkifrommars I think that as this is such a complex situation and you need some specialist advice I'd suggest, as has already been suggested to Sparkly, that you give the Dementia Connect support line a call as. Izzy has posted the details further up in this thread. They'll be able to provide advice and point you in the direction of where best to get the information you need.
 

Nikkifrommars

Registered User
Sep 27, 2020
12
Welcome @Nikkifrommars I think that as this is such a complex situation and you need some specialist advice I'd suggest, as has already been suggested to Sparkly, that you give the Dementia Connect support line a call as. Izzy has posted the details further up in this thread. They'll be able to provide advice and point you in the direction of where best to get the information you need.
Thanks Louise, we will be doing so as soon as possible. We know the social work team want to help resolve issues and get Mum home.. but as you say it is complex.. they are sending me a mass of materials to read soon to prepare for it.. but given the way they usually word these things.. well you need a degree in that subject.. and a week doesnt give enough time to digest all the legalese language.. really had hoped someone else who had been through it could also help but will take that advice from someone where it will hopefully be more accessible.. thanks again
 

Louise7

Registered User
Mar 25, 2016
2,467
We know the social work team want to help resolve issues and get Mum home..
That's a good sign as if social services and the LPA wish to get mum home then I imagine that the care home will have to have a very persuasive case if they wish to oppose this.
 

Nikkifrommars

Registered User
Sep 27, 2020
12
That's a good sign as if social services and the LPA wish to get mum home then I imagine that the care home will have to have a very persuasive case if they wish to oppose this.
Their case as far as I understand it is that they say they are providing 24hr 2 person care.. they are not but especially at present it is difficult to challenge their assertions.. hence the problem.. as I stated.. Mum is meant to be changed/repositioned at maximum 4 hourly intervals. Nutrition etc provided.. however from homes own records this does not always happen.. she should be mobilised to chair daily for lung and general health as immobile.. and at high risk of pneumonia having had it 3 times at least.. this still does not happen for many days at times.. also at risk of dvt due to previous dvt and clotting issues.. if left supine/in bed risks are hugely magnified.. they dont care.. but claim to he providing best care and over full period.. what can I say? Social worker I think is aware and wants to help.. but legally etc.. even she is pretty clueless how to challenge what they say they do as opposed to actually do.. she and other reps for Mum have yet to gain face to face access for any assessments due to covid restrictions..
 

Bod

Registered User
Aug 30, 2013
1,336
Strikes me this could be a case for Trading standards, or even the Police on grounds of neglect/cruelty.

Bod
 

canary

Registered User
Feb 25, 2014
13,663
South coast
HI @Nikkifrommars , do you have any evidence of what is happening to your mum?
Or is it that this is what she is saying? The thing is, that many people with dementia say that they are being ill-treated, not fed, left alone all day, when, actually, it is not true - they have simply forgotten.
If you have solid evidence, then yes, take it to SS.
 

Sirena

Registered User
Feb 27, 2018
2,294
I am guessing that when Sparkly was able to visit her mum, she was able to see the level of care and which was (and was not) provided? It sounds as if she was undertaking most of the care in the nursing home when she was able to. But as she has presumably been unable to visit for months due to Covid it may be hard to 'prove' this is still the case?

It is good news that the social worker is in favour of getting her back home, and will be working towards that. I guess the best thing to do is show that Sparkly can provide the care which is needed. Sorry I can't be any more help.
 

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