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Bed blocking DH, how do I get him home?
134

bloodywhitecat · 08/12/2021 20:33

He has terminal cancer, probably has 6 months left (although we have also been told he has 3 months). He's also had a massive stroke and needs a care package in place to get him home for Christmas. How the hell do I speed things up? His care on the ward isn't great and he is drowning mentally. He is unable to speak or advocate for himself. What are our rights?

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atleastitswarm · 08/12/2021 23:07

My mum and I brought my dad home with no care package in place after a similar situation to yours. Nurses told my mum several times she should really reconsider and wait it out but the hospital he was in allowed no visiting at all so it was just barbaric to keep him there. Dad was deemed fit enough to discharge himself so I can’t help in that area, I’m praying someone comes along who can. Sending you lots of strength and love.

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bloodywhitecat · 08/12/2021 23:09

"If he can be managed with one carer and you are prepared to meet his needs until care is available I would ask the ward OT to let you come in and be shown how to use the Sara Steady"

Already done, I was familiar with one anyway and have proved I can use it safely.

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Somebodylikeyew · 08/12/2021 23:09

Ok. Ipswich and East Suffolk Continuing HC team are on 01473 770198 / [email protected]
More info here, but I would ring and ask how you request fast tracking.
ipswichandeastsuffolkccg.nhs.uk/Localservices/ContinuingHealthcare.aspx

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Somebodylikeyew · 08/12/2021 23:11

That link also has the fast track documentation on it.

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bloodywhitecat · 08/12/2021 23:12

@Somebodylikeyew

That link also has the fast track documentation on it.

Thank you! Flowers
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Thesechipsdontlie · 08/12/2021 23:18

Can you get the matron or team lead on your side? Be specific and persistent. Ask to be there at handover and state fixed deadlines for what you need to happen. (He needs to be home for Christmas, as an example, he needs patient transport home, a package of care/respite for you etc ) if the SW is not supportive ask to speak to their team lead also. Request an MDT to get things moving. Sorry Macmillan haven't been much use, our experience with them was mixed. Good luck op xx

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vdbfamily · 08/12/2021 23:22

Personally, if I had all the gear and felt I could cope I would just ask for him to be sent home whilst awaiting care. I would ask for urgent CHC / fast track assessment to be done once home and if you start to really struggle would ask GP to request an assessment from admission avoidance to put in support to prevent readmission to hospital. It is such a tough call but I personally would not wait for hospital POC. Some agencies insist on 2 carers for a stand aid and double handed care will take longer to source. Are there other family members who can help and give you a break if needed.

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BetterCare · 08/12/2021 23:23

What support are you getting from the Palliative Care team at the hospital?

When went through this with my Mum they arranged everything. Granted this was before COVID. So things may be different.

They should be arranging emergency funding with Continuing Health Care. This will include getting all the equipment he needs for home and transport.

Beacon is a good place to start with advice on CHC funding.

I appreciate it is a different time but with my Mum they sorted it out within a couple of days.

Good luck.

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Atla · 08/12/2021 23:27

OP I am so sorry you and your DH are going through this. You've had some good advice on this thread.

What I would say at the moment is that where I am patients are going home 'awaiting a care package' and are still waiting weeks and months later, so you could be in for a long haul. You have experience of care work, so you know to an extent what you are letting yourself in for but bear in mind it will be 24/7, do you have anyone else to help?

Is your husband suitable for rehab in terms of his mobility/functional ability? I'm assuming OT and physio have assessed him already if you have equipment at home? Is he managing to eat/drink? Apologies, I've skim read the thread.

I think the palliative care team should be able to get things moving, and liaise with district nurses and other services in the community and make a plan with you and your husband about his wishes (and yours) going forward over the coming weeks and months.

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Workinghardeveryday · 08/12/2021 23:31

No advice sorry op, just wanted to send love xx

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newfriend05 · 08/12/2021 23:34

Contact your hospital discharge team , if your in a hospital not in your Borough , contact your adult social services team , every borough should have social workers who specialise in that area ..plus try Macmillan

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rossclare · 08/12/2021 23:37

We had this with my dad. He needed 4 visits a day by carers.
I got a list of all the agencies and called each one to see if they helped and located one.

Has he been assessed fir occupational health and a health care plan put in place?

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BoggisandBunceandBean · 08/12/2021 23:44

OP, have you tried Big C?

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Anaximedes · 08/12/2021 23:45

I would query whether he is not competent actually. Just because communication is affected and someone is weak doesn't mean necessarily that they can't make decisions, it depends on the location and severity of the damage to the brain. Unfortunately this is said too often by busy or ill-informed medical staff when it isn't necessarily true. You could try to insist that a psychologist or psychiatrist is brought from elsewhere to assess this properly. Any problems with this and you might need to bring a specialist in (which you have a right to do) if you can afford this. See here for some useful insight //www.mentalcapacityassess.co.uk/stroke-and-mental-capacity/

Mental capacity isn't all or nothing, sometimes people can be supported to make some decisions for themselves even if they can't make all of them - again this often isn't done because it takes time but again you can insist that they follow the law properly (Mental Capacity Act).

You've received loads of good advice already but I will add that you could ring Social Services yourself. They were very good when a relative of mine needed further care at home after a hospital stay over and above their normal care arrangements. They came the house and went through what the processes were.

Even though it's caused by cancer you can still get services and help from stroke organisations who will know lots about the above such as //www.stroke.org.uk/finding-support/stroke-helpline and the rest of their website site.

If you have a useful GP they might be able to push to get this sorted too.

Flowers

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bloodywhitecat · 08/12/2021 23:45

@BoggisandBunceandBean

OP, have you tried Big C?

I have and they have been far better than Macmillan but I don't think they can help the push to get him home can they?
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Absc · 08/12/2021 23:48

Unfortunately the issue will be the package of care. There’s limited providers who can cover three visits a day even with flexible times. It doesn’t matter who pays if the funding is from chc or social care.

When I’ve completed hospital discharges it’s taken weeks of finding a provider to pick up the package. There’s a big shortage in the care sector of workers. And local authorities have contracts in place with agencies they have to try first or in some areas that I have worker they only fund x amount.

The hospital should be taking with the social workers and holding regular discharge meetings. You can request an advocate especially if the social worker has completed an mental capacity assessment and the outcome was he is unable to consent to his care and support needs. If this has happened there should have been a formal best interest meeting and an Imca would be needed rather than an care act advocate.

The other option is to request a direct payment to pay for a package of care that you source yourself. However this can be challenging to find at times and also then means you would become an employer.

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BoggisandBunceandBean · 08/12/2021 23:49

Sorry, posted too soon. I have a family member who found them very helpful and supportive with her DH. Different situation to yours and he did have good oncology care at N&N, but maybe worth a call?

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BoggisandBunceandBean · 08/12/2021 23:54

I'm sorry, I honestly don't know. I just remember they spoke very highly of them. I don't live in the area any more but I just happened upon this thread and a little lightbulb pinged on. Flowers

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23MinutesfromTuIseHill · 09/12/2021 00:20

I'm so sorry, BWC. When a patient is caught between two departments, nothing happens unless you push like hell, in my experience. But we were lucky, in that our MacMillan nurse was a tiger... That doesn't help you, and I wish you had her: but if the hospice does hospice at home, possibly the person who co-ordinates that might know which levers to press.
FlowersFlowers and heartfelt sympathy to you both

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Frikonastick · 09/12/2021 00:49

Ah @bloodywhitecat I’m so sorry this is happening to you, it seems so bloody soul destroying to have any extra difficulty on top of an already harrowing time. Sending you deepest sympathy xxx

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Snowpatrolling · 09/12/2021 01:00

I’m so sorry about your husband, I work in social care in the community, the issue at the moment is we are not taking on any more packages as we can’t cover what we have.
So even with chc or palliative funding the care just isn’t there. In our hospital alone as of yesterday there were 67 people waiting to be discharcjed to come home but can’t as no package.
It’s heart breaking taking those phone calls and telling people no.
It’s In a right mess at the moment.
Could be worth ringing care company’s yourself to see if you get lucky.

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RavingAnnie · 09/12/2021 01:31

Shelter provide advice on care services. Not sure if this extends to NHS continuing care. Maybe worth trying them. They can be easier to reach via their webchat service.

You've probably seen this already:

www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Says they have 28 days from initial assessment or request for a full assessment....not sure if this helps you.

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RavingAnnie · 09/12/2021 01:33

@RandomMess

Well he could self discharge if that is what he wants and they consider he is on sound mind to agree to it.

If he self discharges it is no longer the responsibility of the discharging hospital to ensure an appropriate care package is in place and he then falls under social services and will need to wait for a separate assessment by them. Even an urgent social service assessment can take many weeks to take place. So he is likely to be left with a potentially significant gap in care provision.
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RavingAnnie · 09/12/2021 01:35

I'd second looking into hospice at home.

Your GP can refer you to a local hospice if this hasn't been done already. They can provide loads of support for you and your partner and it can be in place pretty quickly. Definitely worth investigating.

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RosieLemonade · 09/12/2021 05:54

@bloodywhitecat

He can't get to the loo even with help at the moment but he can help with dressing, undressing, washing etc. I am fully prepared to bring him home without a package in place and have done care work in the past so know it isn't going to be easy by any stretch.

The profiling bed and air mattress, the commode, wendylets, Sara Stedy and a seating chair are all here. He doesn't need hoisting at the moment.

He has a social worker.

We are in Suffolk but he is in hospital in Norfolk as we are on the border (our GP is Suffolk).

N and N or JPH?
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