Adult Social Care says moving care homes not in best interests

[Sillygoosey]

Anyone had experience of Adult Social Care refusing a request to move care homes? DM is in a dementia care home and is mostly funded by the local authority. She was discharged from hospital in Nov 2022 to this home and I requested a move when a social worker reviewed her care in 2023 but they took until December to contact me about it.

Social worker said on phone that it shouldn’t be a problem, it was understandable that I’d want her closer, that under pressure it’s common for patients to be discharged to a home which might not be ideal. Then SW had meeting with care home manager and changed view completely. When I joined the meeting it felt very much like, if you move her and she dies soon after, we warned you. Care home manager and GP both think people with dementia don’t handle moving very well therefore not in her best interests.

I want her nearer to me and my DM stated the same in hospital in 2022 and whenever asked since including recently. I have LPA for health and finance. She is bed bound and doesn’t have mental capacity to make decisions. She would value quality time over quantity. I’ve read cases where local authority forces a move despite family saying not in best interests but can’t find info similar to our situation.

I have to travel quite a distance to visit, I don’t drive and it feels unsustainable. Her siblings can’t help and I’m an only child, handling her fast decline whilst going through a divorce. I am parenting alone and I think it’s all just taking its toll. If she was in the city, I could visit more and do so more easily and I think it would feel less depressing. Can ASC block my request? Who has the final decision legally? I read something about the Court of Protection but I don’t think I can face that after going to court over the divorce.

[Puddingpieplum]

Gosh that's hard. You'd think with LPA that the decision would be yours, but if the professionals involved believe you aren't acting in her best interest they can block you, you may well have to go to CoP if a resolution can't be found.
They may argue that you're acting in your best interests to make visiting easier, it's very important that you convey that it's in Mums best interst to see you more. Does she remember who you are?

[Sillygoosey]

She still does. I was showing her photos of her grandchildren and she asked if the eldest was coming to see her. She couldn’t remember his name but wanted to see him.

[Sillygoosey]

Thanks for your feedback @Puddingpieplum, helpful to know.

[AndSoFinally]

To be fair, it often isn't in someone's best interests if they have dementia. A change in environment can precipitate a delirium which can lead to rapid decline and death in some cases

[AndSoFinally]

Just noticed you have LPA for health and welfare. In that case the decision is yours to make unless the LA wish to apply to displace you (they won't)

[Dragonsandcats]

@AndSoFinally

To be fair, it often isn't in someone's best interests if they have dementia. A change in environment can precipitate a delirium which can lead to rapid decline and death in some cases

I think you’re right, but surely at this point some nicer quality time with family is worth it unless she has a lovely quality of life where she is.

[Beandoodle]

@AndSoFinally

Just noticed you have LPA for health and welfare. In that case the decision is yours to make unless the LA wish to apply to displace you (they won't)

Best interest overrides LPA, my area of work.

[AndSoFinally]

Really? My understanding is that LPA for H&W means you make decisions on behalf of the patient, as if it were a capacitors patient making those decisions, so best interest wouldn't be a factor (as it wouldn't be for a capacitors patient)?

Is it perhaps different in Wales?

[justdontknowwhat2doo]

I guess it depends whether you think 'best interest' is potentially living slightly longer with dementia and old age or seeing your family more before you (likely) lose the ability to recognise them & lose the energy to care whether you see them or not.

I think you would struggle to find anyone who would choose the first option, yet that's what SS are advocating?

I've worked with dementia patients, they don't want to live forever, they want to die with dignity and knowing they were loved.

I'd be kicking up a shit-storm with the SWs, how dare their declarations (which have absolutely no impact on their lives) essentially deny you and your parent more time together while it matters?

Are you asking to move to a more expensive home? Out of area? There must be financial reason behind the decision of 'best interest' cos it's bullshit.

Can you make a formal complaint, that will show them they can't treat people like this.

[Neverpostagain]

Best interest doesn't overide lpa, unless a complaint is upheld by the office of the public guardian. And that is a very high threshold. It won't come to that op. If you are happy you are acting as your Mum would have wished, and after listening to advice, go for it.

[Sillygoosey]

Thanks for all the comments, I appreciate it. The move would be from the countryside (cheaper) to the local city where care homes places cost more. I was looking at a more expensive home nearby but it would require me to top up so I don’t think I could afford the full top up price. Whenever I’ve asked what the council contribution is they can’t say. I’d been told if the SW recommends a move then the case goes to the broker team who look for a home which accepts the council rate and then offer it to me. But it doesn’t look like we’ll get anywhere near that stage.

I’m fully aware she might not last long whether she stays or moves. I don’t know how she has got through the winter. She weighs 35kg, has chronic asthma and has survived covid several times since September 2022.

Ideally I’d like her closer so that I can spend a bit more time with her. At the moment I’m spending 40 mins with her each week do to catching trains there and back and she can fall asleep during visits. The care home manager wants her to live as long as possible but she spends most of her day alone in her bed when she’s a person who loves company.

I know she’d like to see me more and if she had any true say in and understanding of her situation, she wouldn’t want to be here at all living like this. She dreaded getting dementia after caring for her mum-in-law.

I was given the impression by different people (SWs and others employed by the LA) that I could move her but they have taken months to address it and now they say not in best interests of dementia patients - why not be honest from the start?

As I understand it, if you self fund then you can do what you like or the person with LPA can therefore the aim is not to meet the best interests of everyone. Self funders could also be moved when it’s not in their best interests.

I understand the risk of a move but she has also been hospitalised several times from the care home - she recovered, she didn’t worsen despite the hospital environment which wasn’t as attentive as a care home. In fact I felt she was more alone then despite daily visits from me as I live nearby.
Sorry for rambling.

[justdontknowwhat2doo]

I have no idea who you can get to advice you in RL, but I would start to look like you are serious about challenging the councils decision.
Have you looked at some of the charities like Age Concern etc?
They may be able help you with letter templates/appeal/complaints procedures.

I'm sorry you're going through this, I've lost 2 parents, one to dementia, so I completely understand how heart breaking it is.

You have to make a nuisance of yourself in the sense you need to show you are t going to take it lying down. Unfortunately it's the only way to get anywhere with 'computer says no' culture in which humanity isn't present.

[Puddingpieplum]

OP this is all really complex, but ultimately as you are beholden to social care to fund then you do have to work with them. Are your Mums needs escalating, is she becoming more complex? One way to trigger a move is to change the category of care, so if she requires nursing care that might mean she has to move. In your opinion are her needs increasing or is her care quite straight forward?

[Sillygoosey]

My mum has deteriorated a lot since she moved in but her care needs are straight forward so nothing to justify a move, plus the home is supposedly able to provide nursing and palliative care though I think this would be external support.

I’m due to speak to the GP today even though they’ve already given their opinion to the social worker so not sure what the point is. GP says change doesn’t go down well for dementia patients so doesn’t recommend a move which would probably distress her. Says no medical reason to move her.

I will be asking if she is fit enough to move/ is there a medical reason to keep her there, she has coped with several moves to hospital where they don’t know her/new sensory issues but she coped and recovered so why not a different home where I could visit more often?

[AgnesX]

It's so hard. In the same position I'd want the same as you, to give my mum the opportunity of quality over quantity.

Being able to be with them is so important, so they're not alone.