Mum has dementia. Disagreement with Social Services about level of care required

Once you're in a care home you are completely reliant on others. You say she can't get the bus alone etc, but in a care home she'll never ever take a bus again, even with a carer. The things she can do will deteriorate. I honestly think you need to try anything you can to keep her at home.

This was the issue we had with my relative’s care. He lives in one county and the other LPA lives in a neighbouring county. So relative was never going to live in a home very close by due to where the funding will come from when he runs out of his own money. He’s ended up 45 mins drive away. Not ideal but he’s close to where he had his house so he does have some local friends visiting which takes some of the load off the other LPA.

@Blueuggboots we had a social worker suggest extra care when they were obviously trying to work through a slow process and we were trying to make it clear that we were barely managing between crises. Have you spoken directly to extra care places? To understand if they have any spaces and how suitable they might actually be - when I spoke to a couple of managers they wanted to understand need level first. Even from our phone conversations they said needs were beyond what they can usually support and I was able to report this back in my argument with social care. If you have discussed needs you are at least armed with whether 4 calls at set times for medication is even possible.

Also, record every issue in a timeline, call to notify her council about every problem, make them have to record these - keep reminding them 2 calls are not keeping her safe and well. If they keep having it pointed out, you may move up the list.

What part of the country are you looking at, we have some lovely extra care near us in the south west

As she is already known to social services can they make the referral, that's how it works when we looked for our parent, the flat was self contained with 24hr support and rented even though they were self funding. Are there supported housing schemes ,in the areas you're looking at.

Exactly so , I started work in the time when elderly people were sent off to nursing homes at the drop of a hat until people worked out that a. the cost was becoming exponential b. they realised that supportive care in the home was preferred by many of the elderly people themselves and also helped preserve mobility ,function and social connections. The ironic thing was despite the much lauded move to intermediate care and support /rehab services in the communtiy (which meant the NHS reduced its bed capacity which has led us to the terrible issue with lack of movement through the whole system from A&E to safe and effective discharge planning) there has been an utter erosion of said rehab. support and primary care services that allow people to safely remain in their homes and reduce pressure on families. So we all have to currently suck it up,acknowledge that the system is fxxked and plan ahead for our future wherever possible.

Why would I do that? Why would a solicitor in community care law lie in a workshop?

Few families could afford to pay 6 figures for care, but LAs and ICBs do. You are clearly not familiar with this sector!

It takes three full time staff to provide 1:1 care in waking hours. That would cost £75,000 pa alone, just in wages, then there’s employer’s NI, annual leave, sick leave, pension contributions and training. No way is £8,000 pcm x twelve, £96,000 going to cover the costs of six full time staff in waking hours! It’s going to be £150,000 pa, plus the additional employment costs as above, hotel costs, admin costs, activities, facilities, etc….

We looked at a care home in 2021 for DD1. They decided she needed 1:1 care 24/7 and they quoted £5,000 to £6,000 per week for her. NB - possibly £300,00 pa for 1:1 care. Not 2:1!

You are also wrong that any LA would tell the family to apply for NHS CHC funding. Nobody at Social Services even told me about it. Someone on a charity forum told me. Then I asked the social worker about it, and they told me DD1 was unlikely to get it.

DD1 was at a residential school in another county. I applied to our home CCG for NHS CHC funding for her. They said she was the responsibility of the school’s local CCG. They weren’t going to take responsibility for her either. I had to write to the Secretary of State for Health to ask who was responsible for her. They told me to take it up with NHS England. It took me two years of chasing to get the answer out them - it was our home CCG. I could have given up at any time, and our LA would have ended up having to fund DD1.

As for NHS CHC funding for challenging behaviour in adults, there has to be a primary health condition behind it. (I am not familiar with children’s CHC funding, but I would have thought fundamentally it’s still about a primary health condition)

One of the CHC funding assessment domains focuses on challenging behaviours.

To be fair to the social care sector they have been telling people the system is fucked for 20 years but nobody really listens until it personally affects us and successive governments haven’t tackled it because it’s too big of a job.

It isn’t entitlement OP it’s just not realising the reality of things until you are faced with it. Some good advice on this thread though.

I completely disagree that it is entitled to expect adequate care for someone in their later years, especially a lady who is actively saying she wants care herself.

The threshold is too high and waits for people to hit crisis point. This is completely wrong. The burden is placed entirely on families to the point that it completely destroys their mental health.

MIL cannot cope at home, we don't need a social worker to tell us that. We are the ones dealing with it daily. They just turn up, put a care package in place with carers that only stay for 5 minutes and leave again leaving family to deal with the fallout when it all goes wrong.

I had a nurse who didn't understand the problem in giving important information over the phone to mum with Alzheimer's when dad's notes said all discussions needed to be with DB or me because mum was incapable of retaining information. Dad has demerium from an infection and mum hadn't even noticed he was ill.

In the end, the crisis happened, fell and broke her hip and that was the point we finally got her into a care home after several months of her bed blocking the hospital. Such a common and unnecessary scenario.

It is hard for SWs - I was one for 25 years, so I know - they have to protect people from over-zealous relatives who want them to be in a home when that is not what the person wants or needs, but they need to avoid prolonging care at home with the risk of the "terminal event" of a fall and fractured femur.

The reality is that LAs fight tooth and nail to spend as little as possible - I would do an assessment and the LA would prune my recommendations to the bone, putting the person at risk - and there was nothing at all I could do about it.

It was because of this that I eventually left because I knew that the assessments were often ignored.

Having secured some home care visits, you then have to run the gauntlet of the flawed system: "getting up" visits delayed till lunchtime while the carer dashes round all the others on her list, incontinence the minute the carer leaves, incompetent uncaring carers (some are angels, some are not), carer sickness and person left uncared for .... the list is endless.

I speak as a retired social worker and as someone who employed care for my late OH. I could not leave him on his own in the house, so when a carer arrived I would take the opportunity to go for a walk. I returned one day to find the darer administering a drug dose that would have killed him ..........

The idea of an extra care facility is great in theory but what it often means is that the person has to move twice: once into this facility, then (when the move has confused them they decline rapidly) a further move to residential or nursing becomes inevitable.

Any social worker experienced in working with older adults will be fully aware of the importance of timed meds visits for Parkinsons. As should any domiciliary care agencies they contract with.

I wish - we could not even get staff on a hospital ward to get that right! The Parkinsons nurse had to give them a bollocking and we had to stay with him in order to remind the nurses when the meds were due.

I think you should look into an extra care facility which is a half way place between a sheltered scheme and a residential home.

In extra care, she would have her own flat but the staff are on site 24 hours and offer care and support. Extra checks can be written into the care package and they can do shopping and laundry on top of meal prep, personal care and meds prompting. It’s quite a lot cheaper than residential care as you pay rent and care bills but are financially assessed for both. She would start off by paying full rent and carers bills due to the equity but once she has under £16k, housing costs will be subsidised via housing benefit and care costs may also start to be subsidised.

They have high thresholds and, in my experience, the only people not accepted are those who wander or who are behaviourally aggressive/challenging. As it is usually social housing, you’d have to check whether they would accept a home owner. They might need to see proof of sale first.

Yep. Horrible when you have to keep your fingers crossed for a fast enough decline when it's exactly the opposite of what you want in reality.

When FIL was ill we had a lot of issues with social services to the point we ended up paying for private carers and doing a huge amount of care ourselves as we didn’t want to wait for them to get their act together while he suffered. If it’s an option to get any care privately at all I’d recommend that if it’s an option for you. We arranged a carer for every morning to help with washing and dressing as MIL couldn’t manage that due to her own health and then we did the rest between us . It just got care in place quicker and kept FIL comfortable. I really feel for you as it is a terrible situation to be in and so frustrating

Unfortunately they don't help until there is a proper crisis.

With MIL, I contacted every agency, politician, councillors, and charities (e.g Alzheimer's UK) I could think of. Pretty much no one helped except our local Tory MP. Most others ignored me.

When MIL set her kitchen on fire by microwaving something so long it spontaneously combusted, the Fire Service were great as I asked them to do an adult safeguarding referral. The GP did one as well etc but still no help at all from Social Services.

In the end, the crisis happened, fell and broke her hip and that was the point we finally got her into a care home after several months of her bed blocking the hospital. We had to be very assertive with social work and make sure they documented no one in the family was able to be the carer. At one point they wrote down we were suffering 'carer stress' which was bollocks.

This is where every one of us who is able, needs to be working and paying Tax to fix this as the whole care sector is on its knees. We must start paying care sector workers a proper decent wage and not the minimum wage for shift patterns that could be anytime 24/7.