Edinburgh - nursing homes

[miimblemomble]

Hi all

Looking for some local info... we just heard thaT MIL, who has been in hospital for a couple of months, will not be going home. Both the hospital and the council agrees that she will need full time nursing care. She has Parkinson’s, dementia, osteoporosis and is now almost unable to move independently. She’s also incontinent, poor thing.

She has few assets (around £7k savings plus a tiny pension) other than her half of the home she owns with PIL.

As such she should be fully funded if they can find a suitable local authority nursing home place for her. Any experience of how long this will take? I’m guessing that demand outstrips supply.

PIL lives on the west of the city. The four places that the social worker has proposed so far are on the east, and they are all private so would require a hefty top up.

Any local experience to share? DH and I are from Edinburgh but live overseas now.

Cheers m’dears.

My MIL was at Cairndean House. It was particularly good for dementia though it was very expensive. She self funded. I can thoroughly recommend it.

My uncle who had dementia was in Colinton Care home. He got his place the day my friend's dad died who was in there.

Lots of people locally recommend Murrayfield House. Especially over the way they dealt with the COVID situation in locking down prior to actual lockdown and keeping in touch with relatives too.

Any masonic connection (it can be pretty tenuous eg for a woman her father or husband once being a member of a lodge)? We had a good experience with the masonic home (which has previously had a terrible CQC) but that wasn't our experience - the staff were great and went above & beyond to provide excellent end of life care. The home also wasn't on the radar of the allocated SW so might not have been mentioned to you as an option.

Another relative has been in both the BrigherKind homes - their immediate next of kin prefer Colinton to St Margarets but both seemed OK when I've visited.

Is the proximity to her former home important to facilitate visiting? If not - a home with decent parking can actually be advantageous eg. the one in Ravelston was a pain to visit during the day as it was on street metered parking.

Presumably the council will just put a charge on the house for the top up fees. I think you can only decide if you think the top up is worthwhile after visiting.

I certainly think my relative who is currently in a care home is getting good care & that creates so much less angst for their spouse (and the rest of us!)

Sometimes spaces come up quickly but make sure it's actually where you want her to go before she is moved from hospital. Once she is i somewhere it can be difficult to get moved if you are unhappy or the place is difficult for transport etc.

I'm sorry to say that some of the council ones just aren't great and we had to turn down a couple of offers which they weren't happy about. Honestly while they are in the hospital using a bed, it's really the only power you have to advocate for what is best. You should be allocated a Social Worker, my mum's one was terrible. We are really not a very demanding family but we were really disappointed in the way things were handled.

Anyway, ultimately we chose Cairdean on a part funded basis and thought we'd worry about what to do when the money ran out when the time came. Unfortunately my mum wasn't even there a week before she sadly passed away. However we were all impressed with the home and the care and attention they had for for my Mum and for the other residents on the brief occasions we were there and the care they had for our family when my mum died.

Thanks all. We are all new to this.

FIL and SIL are under the impression that the Council will «allocate» a suitable place when it comes up.. my impression is that the most they will do is inform us whether MIL needs nursing care or not, and tell us when any places become available - but it’s up to us to read reviews, visit, get the prices and sort out the top ups.

MIL has only a tiny income, Very little savings but owns half a house. Am I right in thinking that this makes her eligible for local authority funding up to whatever their weekly rate is, then anything beyond that has to be paid by the family? And we can apply for deferred payments / charge in the house to pay for this?

How much is the local authority rate? Are top ups required in Council run homes?

Thanks

This is the info from Edinburgh council which might be useful:

www.edinburgh.gov.uk/paying-care

To be honest my sister dealt with most of this. My DM did have some savings from when my brother and dad died and it took her over the threashold but solicitor recommended prepaying her funeral to bring it down which we did. We had to pay a pretty big deposit before she went in (private home) but we got some of that back as she ended up only being there for 5 days.

MIL should have a hospital based Social worker allocated to her. My DM was in the ERI and the one she had was poor. SHe and the hospital were obviously both keen to get her out and into a care home asap but the places that they offered were not suitable to her needs or just not suitable i terms of the quality of care. The pressure they put on is quite bad. You need to do your own research really into what council homes you'd be willing to accept or look into private care. There are obviously some lovely council places but you may need to hold strong to get a space in the one you think is best for your MIL, however you might just be lucky.

This might also be useful:

www.edinburgh.gov.uk/supported-housing-care-homes/care-homes/1

miimblemomble
I am so sorry you are going through this with your MIL.

My mum also has Parkinsons, dementia, and osteoporosis and now wheelchair bound.

She was taken into hospital from her home with my step dad in January and moved to a community hospital in February where the decision was taken that she would not return home but would need a nursing home.

The social worker we had was adamant that she only needed a care home not nursing, against all the medical staff's advice and we wasted time going round care homes to visit. All refused to take her as they couldn't meet her needs.
Then lockdown happened. And the two nursing homes we would have accepted had closed their doors.
The social worker kept pushing for us to move my mum out of the hospital and into ANY home that had a space. It was very stressful.

The upshot was my mum was moved into a nursing home without us having seen it and without us helping her move. I still have not been able to visit her although my step dad has had one visit a few weeks ago in the garden. Only 1 designated person and only 2 visits a month.

Time levels are a strange one...once lockdown hit then they just wanted my mum out as quickly as possible. I'm not sure what the timescale would be like at the moment. I know that once a home had checked my mum (it had to be done by phone due to lockdown) then it all happened very quickly. Like from Friday to Monday quickly. Its all the finding a space that is willing to take her that takes time. Perhaps they are doing actual visits now though from the home to the hospital? That's maybe something to check. If you (or your SIL and FIL since you are at a distance) can't get into a home to look at it then you can ask for them to take you round via Facetime so at least you can check your MIL's room out remotely.

My mum is over the water in Fife so I can't help you with the homes in Edinburgh but I would check if you are allowed to visit homes at the moment to check them out.
I would check the care commission reports for the homes you have in mind.
And also look at if it is easy for your FIL to get to, bearing in mind that even if he drives now, that may change as he gets older.

Good luck with it all. It's not an easy time for you.

You can't visit at the moment to check them out, so all you have to go on is the Quality reports.

My MIL moved to a care home last week after a spell in hospital. She'd been staying with us over lockdown. They allocated her a place after it became clear that she wouldn't be able to continue staying with her/own her own, but it was made clear that it would be a temporary fix. Luckily a place then came up in a home that my BIL had previously visited and had put her on the waiting list for.

Has she been allocated a social worker? Ours was extremely helpful. There's also a finance officer in Edinburgh who will talk it all through, but my understanding is her home won't have to be sold if FIL is still in it.

Be aware that the admittance procedure is brutal - she'll be admitted, given a covid test, then quarantined for 14 days straight, basically only seeing a carer when they deliver meals. This was super-tough for MIL as you can imagine. However, I think that is going to be the protocol for some time to come.

A lot of homes in Edinburgh are council run (even though they aren't...) so there's no top up. It depends what you're looking for really.

Sorry for multi-posts - finding out/getting a Social worker allocated is the first and best step to take. They will talk you through all this OP, it's their job.

Thank you all so much. Unfortunately things have gone off on a tangent. After saying that she’d need nursing care, and getting sw involved, and family spending the weekend researching homes etc the hospital (or the OT at least) have decided that MIL can go home. Apparently she can walk 50m with a frame. Carers can come twice a day to get her up and to her chair / ready for bed. She will have a catheter fitted. Nothing said so far about the fact that she’s faecally incontinent as well (this was why they recommended nursing care - she couldn’t be left to sit in her own poo between carer visits). Or that FIL is incapable of making sure she takes her meds, or drinks / eats properly. Or that he won’t be able to leave her at home or take her with him and go out ever - there’s no way he can get her in / out of the car on his own.

I’m so fucking angry.

I'm going to PM you.

Oh I am so sorry. No wonder you are angry.

Can you ask for a (possibly second) multi agency meeting? With the OT, staff on the ward and family? If the SW is more on your side they may be able to come too.

You haven't been listened to.

One of the factors in our case was not just that mu mum was incapable to be at home but at 82 my step dad was not going to have any quality of life and could not be reasonably expected to look after my mum. And that was with family help, 4 carers visits and possibly a night time carer.

Its so hard..i hear you. But you need to be a squeaky wheel. Ask for a review. Tell them how worried you are for both of them.
At meetings it is very common for your FIL to play it down. They don't want to admit they couldn't cope. After talking about it and agreeing he couldn't cope, when it came to the meeting my step father couldn't bring himself to say he couldn't cope. I had to step in and tell my mum she couldn't go home. Your FIL needs advocated for as much as your MIL here.
Does your MIL still have capacity? Or has Power of Attorney been activated?

I'm really sorry this is happening. I know it was hard for me as the child (relatively) nearby who was around to go to these meetings but my brother who lives abroad found it very hard to be so far away.

It might be worth emailing the SW and asking for a phone call meeting. Especially if your partner/husband is a POA.
Your SIL will be in the midst of it I imagine but it can help for them to hear another voice reinstating the family's worries.
Good luck with it all.

Sorry...me again. Brain working through things.

It does seem such a jump from nursing home to back to home. Ask about respite care (they can sometimes work on incontinence retraining and mobility). Or ask why not a transfer to a community hospital where they aren't as acute as the main hospital but can assess more clearly and perhaps offer Occupational therapy. Although perhaps that isn't going on so much at the moment.

My mum moved into St Margaret's earlier in the year and is very happy there. The staff are also excellent in keeping my dad up to date - due to his health conditions and mum's they haven't been able to see each other since lockdown but the staff have done all they can to facilitate contact via FaceTime etc. Mum is self funding

Sorry just seen your update. That sounds appalling- so sorry you and your parents are going through this.

You know that if MIL no longer has capacity you can refuse the proposed plan?

Yes. Very many incontinent people will be left soiled between care calls. It’s often unavoidable. But if FIL simply cannot cope at home then hospital cannot discharge. No matter what POC they are offering.

I have worked with dementia for 20+ years. Am currently a Dementia Champion in an NHS hospital. If MIL does not have capacity then next of kin cab block anything.

I didn’t think they could force a discharge? Speak to discharge nurse and SW again regarding your concerns about your FIL coping with incontinent MIL.

Also, SW email a weekly list of available places. The list shows suitability for dementia etc, and also if fully funded clients are accepted. I would imagine there’s a lot of unfilled spaces at the moment (sadly).

After looking at lots of care homes all over Edinburgh, we chose Manor Grange, but it was v expensive. It was lovely though, and the care was excellent. I would recommend.

Hello

I just wanted to pop back say thank you to all who sent PMs and posted advice. Things have moved on, and - long story short - MIL moved into a nursing home yesterday.

The main issue seems to have been the medical / physio / OT team / council / social workers making a total arse-up of the communication between each other and with the family.

At the hospital we had multiple nurses giving conflicting information to FIL, SIL and DH when they called or visited. Add the physio team, the OT and her assistant, the ever-elusive consultant Dr and the here-today-gone-tomorrow social workers into the mix and it became impossible to manage - especially as we were limited to one visitor (FIL - a very unreliable witness!) and phone calls. That's 11 different people to ask about MIL - and no clear idea as to who is in charge of what. At one point weeks before, some random woman turned up at FILs flat to "measure up for the equipment". No one can tell us who sent her, or what prompted her visit - nor why a whole bunch of lifting equipment including a Steady Sarah and a toilet hoist thing is now cluttering up FILs tiny flat! This all happened long before they were even talking about discharging MIL.

DH spent pretty much three full days phoning and insisting on speaking directly to everyone to get the full story. No one could tell him who was actually the "discharge coordinator" or "discharge nurse" for MIL. It appears that they are not following normal procedures just now due to Covid - there are no big meetings etc. The consultant told him that the hospital doesn't actually make recommendations about future care - while, at the same time, the nurses were telling FIL that she was likely to need to go to a nursing home - which was the line we were all heading down. At some point though, the physio randomly decided that as her mobility was improving slightly she might be able to go home - but she didn't tell anyone about this, not the Dr, nurses, or family: she just added a note to MILs file, which popped up as SIL was sitting with the temp SW talking about nursing homes!

It didn't help that the original SW was assigned to her on a Friday - then he went on holiday for a week the next day and left it to a temp replacement to deal with - and the replacement just went off down the home care package route due to seeing the physio's update but not actually talking to anyone else about it, including family. Nightmare!!!!

The upshot was that the original SW returned from his holiday, got the full story from SIL and took charge. He went to the hospital to see MIL in person and assess her, to ask what she wanted (and to confirm that she doesn't have capacity). He consulted properly with SIL and FIL. FIL, to his enormous credit, was able to say that he cannot have MIL moving back home, even though he wants to. He can see she won't be safe, and that she needs a level of care that he can't provide, even with a full care package. He really pulled himself together to do this, with full support from DH and SIL. The SW agreed, having seen MIL. Between them, they managed to find a place in one of the closest homes to FIL, she moved in this week and fingers crossed it all works out (DH and I are still holding back on the celebrations for now, as the finances still haven't been nailed down completely - it all seems to have been just too smooth ;-)).

Anyway, thanks again for all the help and I hope all my blurb helps anyone else who is battling with the system atm.

@miimblemomble I'm so glad the original SW turned up and got things sorted for you. Hoping it continues to be positive x

@miimblemomble
I am glad it has all worked out. What a difficult process for you all. Thank you for coming back and updating.

Moving a loved one into a nursing home is always going to be a hard journey but obviously at the moment there are so many added complications.

If it makes you feel any better I saw my mum for the first time since she went in at the beginning of lockdown (Parkinsons and dementia) and it has taken a while but she has settled into it. I came away heartened that she has improved a little in her cognitive ability now she is settled and seemed very well cared for. It was such a relief.

I wish your MIL an easy settling in period. And hopefully some sense of an easier but different life for you all.