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PSP Association
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Nursing home woes

Hi all,

Just a quick update on my dad. Having been approved for CHC Fasttrack funding a week or so ago - and having been in hospital for 3 weeks - we are now unable to find a nursing home willing to take him.

He is considered a fall risk and, after assessing him, don't believe that they can offer enough care.

Meanwhile he sits in hospital, taking up a hospital bed in a less-than-ideal environment for someone in the palliative care stage of the illness.

I would have thought that nursing homes would be falling over themselves (no pun intended) to receive the guaranteed income from a CHC patient.

I am consistently astonished by how difficult it is to organise care arrangements for my dad as his illness has progressed.

Then I saw this : news.sky.com/story/more-tha...

Anyway - rant over.

Thanks for reading


12 Replies

Good luck to you and your family in finding a nursing home. I just have one thing to say and that first one thais don't jump at that has an opening. Check it out. I just remember my mother in law. My sister in law changed the home her mom was in the first week.

Good luck in what ever you do.


Hi yes it is a very difficult subject and it is the same just to find respite care as well. It seems silly a patient needing nursing home will not take them probably because its like too much hard work! x

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Mp, My husband was in a Care Home to recover from pneumonia. He started to go downhill fast and he ended up unable to move. He never had exercise! He had an assessment for CHC. That was the beginning of last October. It wasn't until before Christmas we were told he would get it but the nurse needed to fill in a different form! I rang her and told her this. She hadn't been told! So I met her at the Care Home with his new Social Worker and the form was filled in. After Xmas (in January) I had a phone call telling me he had been awarded CHC funding and I needed to visit the Nursing Homes they mentioned.

I looked them up on the Internet and discovered two had received really bad reports from the he CQC. I told them I would not be visiting either. I went to see the other two.

One was totally unsuitable for him. The room was not much bigger than a cupboard! The other was alright. Not a WOW just an alright! They knew about PSP however. So I said yes to that one. They said he would have to be assessed. This was on a Sunday. On the Tuesday afternoon I rang them to ask when he would be assessed as I wanted to be there, and I was told they shouldn't have shown me that room as it was already promised to someone else!

He was taken to hospital in the early hours of the following morning suffering from aspiration pneumonia. He died 3 weeks later. You have no idea how much I wish I had taken him home. At least he would have been cared for. He wanted to die in the Hospice (because he was worried about me I think) but died in hospital. Nothing seemed to go right for him.

I don't believe they had promised the room in the Nursing Home to someone else. I think when they heard PSP and how ill he was they decided they didn't want to take him. So if you can take care of him at home with help from various agencies or charities then do it. You will take care of him better than anyone else.

Incidentally the two Nursing Homes I refused, well one ended up on Channel 4 after an undercover reporter went in to record what was happening. It is a BUPA home by the way! So don't be fooled by the name on the package!

The other is under special measures as a member of staff reported what was going on. She lost her job as a result but they are having to improve things. I have been told virtually all the Nursing Homes in our area are in a similar position and are failing! So this is a real nightmare for carers.

I think the Care Home where they were meant to be looking after my husband failed him too. I know they are not a Nursing Home but they refused to feed him! That is not a Nursing Home job, anyone can do it, but the truth is they didn't have enough staff. I had to feed him but was never there for his breakfast and sometimes they didn't give him a drink! Despite the fact I brought Smoothies for him and they were in the fridge. So if you can take care of him at home really really think about it.

Love to you, all of this is so difficult.

Marie x


I'm so horrified to read your account of what happened with your late husband. How can that be allowed to happen, there is something seriously wrong with the system if we can't look after people who are the weakest in our society.

Please don't torture yourself with if I had scenarios. You were doing what you thought was best as we all are.

I completely agree with keeping loved ones at home but I understand that it's not always possible even with the best intentions. My mum moved to the other side of the globe to be kept at home.

Remember the good times with your husband.

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Thank you. I thought I was getting through this but the past two days have been so difficult. I really don't know if I will ever get over it all. I admire those who do, so very much.

Thank you for thinking to reply.

Marie x


Dear marie. Ive read your posts and it seems to me that the trauma and worry caused to you whilst trying to sort out your dear husbands care and comfort at the end of his life is still with you. We all try so hard but the constant banging of our heads against all the bloody brick walls that keep popping up in front of us must take its toll in the end. We are all so good at second guessing ourselves that we dont appreciate what brilliant advocates we are. I hope you get some mental peace and enough strength to get through the dark days which hopefully will get less with time. Its very early days yet so dont beat yourself up. Everyone of us deals with things in different ways so just do what is right for you. Take care of yourself. Marie

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This is a common problem,. Rog went into a nursing home when I had a weeks respite, he fell six times, he now has live in care when I am away , it works well CHC fund it as they will fund up to 20 per cent more than care home fees.

If you have the room that may be an idea, or a very robust package at home.



I'm no expert on chc but my dad's GP has said as soon as my dad needs more care as he's probably in his last 3 months due to recurring chest infections, chc will be fast tracked. The care provided will be at home though so can you get that put in place? It's not just care homes that are covered for CHC. Worth a look into, of course it may not be suitable for you but thought I'd suggest. Lots of love x

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We had 4 visits a day funded privately. It hasn't been enough as there isn't really the space for the equipment required to lift him when he falls.

CHC fast-track could only match the 4 visits at home - which leaves us in the situation where we would be unable to lift him.

So residential nursing care was deemed the preferred option by both the MDT team and us.

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Oh I see. So hard isn't it, in every way.

Hope you find a safe place for your loved one xx


Awful situation isn't it. My dad is in hospital, going through assessment now, and they've recommended a nursing home. Problem is, he came in to hospital from a home (just for respite) - he had kidney failure, fecal impaction, urine retention, chest and urine infection, sepsis and severe dehydration. His GFR was five. That was after 10 days in a nursing home, where they'd had strict instructions to monitor his fluids in and out very carefully and seek medical attention immediately with any issues. WE had to insist an ambulance was called, they were still not taking action when he was writhing in agony - they said he was having a panic attack!! We're point blank refusing to consider a home because of the experience we've had, but I haven't a clue how we'll cope at home. Four visits won't be enough at all. I really hope you get some resolution and find the answer, I'm sorry you're going through this too.

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Good luck to you and family x


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