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Now we are to have end of life care thrust upon us? - Page 3 - Carers UK Forum

Now we are to have end of life care thrust upon us?

Guidance on coronavirus and a place to share concerns and support
Thank you Michael and the policy team for taking my plea seriously. Are you expecting or have you received a response from NHS?
I am really worried/scared about this. I have written to the hospital where my Dad is an inpatient and his MP- no response so far. My father is terminally ill and tested positive for Coronavirus (infected whilst an inpatient). The hospital want to discharge him but his landlords won’t have him back whilst he is positive (he has been tested twice since the first test- all positive). They won’t even let us collect his belongings from his home- so he has no access to money, his glasses, clothes , shoes etc.
The hospital are still saying they want to discharge him. I have said he can live with me temporarily but we will need help. He is meant to get Palliative Care and will need carers - how on earth does that work if you are still positive? I can’t help him on my own- I would be scared of doing the wrong thing from a Palliative Care position and leaving him in pain or worse. It’s simply too much.
We feel desperate and like we have just been abandoned. There is literally no one speaking up for people in our position. All I hear about is the NHS heroes but nothing about those in our osorion. Completely alone and abandoned. It’s frightening.
Faye, find Michael from CUK on the forum and send him a personal message, so that CUK can help.
Faye_1506 wrote:
Wed Apr 22, 2020 5:44 pm
I am really worried/scared about this. I have written to the hospital where my Dad is an inpatient and his MP- no response so far. My father is terminally ill and tested positive for Coronavirus (infected whilst an inpatient). The hospital want to discharge him but his landlords won’t have him back whilst he is positive (he has been tested twice since the first test- all positive). They won’t even let us collect his belongings from his home- so he has no access to money, his glasses, clothes , shoes etc.
The hospital are still saying they want to discharge him. I have said he can live with me temporarily but we will need help. He is meant to get Palliative Care and will need carers - how on earth does that work if you are still positive? I can’t help him on my own- I would be scared of doing the wrong thing from a Palliative Care position and leaving him in pain or worse. It’s simply too much.
We feel desperate and like we have just been abandoned. There is literally no one speaking up for people in our position. All I hear about is the NHS heroes but nothing about those in our osorion. Completely alone and abandoned. It’s frightening.
Hello Faye. I'm sorry to hear that you're going through a difficult time in trying to organise appropriate discharge from hospital for your dad. I've passed on your message to Carers UK's Helpline and I hope to be able to post a response within this topic (or as a private message) within the next couple of days.

Wishing you and your dad well

Michael
Rosemary_1706 wrote:
Tue Apr 21, 2020 12:58 am
Thank you Michael and the policy team for taking my plea seriously. Are you expecting or have you received a response from NHS?
Hi Rosemary. We have a particularly busy couple of days ahead but I will try to get an update from our policy team by the beginning of next week.

Michael
I hope not as my partner for 25 yes has been in hospital for the last 2 weeks and I received a phone call this we!ek saying we will have to discharge her urgently and get her home as quick as possible as she does not have very long to live and needs to be home with me and have palliative care!
It really scares me!
To think I'm going to be on my own after doing everything together because she's a double amputee!
Has a cathereter
aand other underlying medical problems
UPDATED REPLY
Sorry Douglas, having read you message again, I realise I had misread things. Please accept my sincerest apologies.

I do not see how you can possibly be expected to manage your wife's needs without specialist support, at any time.

What would you like to happen now?

Managing a double amputee, even if well, would be a real challenge.
To manage someone who is a double amputee, with a catheter, fast approaching the end of her life surely requires round the clock care from skilled nursing staff, not just carers.

That means either in hospital, or a hospice. Usually, Continuing Healthcare with round the clock care at home might be a possibility, but that is unlikely, given the current crisis.

When my mum was very ill, I had a horrible battle with the hospital to prevent them from discharging her back to her home, where she would have been bedbound and totally alone for 22 hours a day. I know how horrible that was, I shall never forget.

They sent the hospital bed, nevertheless, but I didn't go over to let it in.
The ward sister was VERY annoyed about that. She said if necccessary she would take mum's keys and let the bed in herself.

I had to tell the hospital that I would keep the house double locked, and only I had the key to the outside front door, the one they had found in her personal belongings (!) was the inner door!

Once again, many apologies for my mistake. Keep in touch.
The way I read Douglas' post was that the hospital wanted to discharge his wife and not necessarily that the wife was demanding that she be discharged back home.
Douglas, I am afraid your wife`'s proposed discharge to die at home has come at a time when much of our carers rulebook has been disguarded, if not ripped up. Several regular forum contributors would have been shouting to watch out for an unsafe discharge and reminding you that you are not obligated to care and if you chose to care at home , your wife should be offered a care package delivered by palliative care/local authority.

Personally, I don't think you ought to be forced into palliative care at home, but you might be well advised to speak to a Carers UK advisor on the phone to see if they have a better understanding of the process in these unnerving times.

Any thoughts please Michael?

(Sorry Douglas, I should have said partner.)
Faye_1506 wrote:
Wed Apr 22, 2020 5:44 pm
I am really worried/scared about this. I have written to the hospital where my Dad is an inpatient and his MP- no response so far. My father is terminally ill and tested positive for Coronavirus (infected whilst an inpatient). The hospital want to discharge him but his landlords won’t have him back whilst he is positive (he has been tested twice since the first test- all positive). They won’t even let us collect his belongings from his home- so he has no access to money, his glasses, clothes , shoes etc.
The hospital are still saying they want to discharge him. I have said he can live with me temporarily but we will need help. He is meant to get Palliative Care and will need carers - how on earth does that work if you are still positive? I can’t help him on my own- I would be scared of doing the wrong thing from a Palliative Care position and leaving him in pain or worse. It’s simply too much.
We feel desperate and like we have just been abandoned. There is literally no one speaking up for people in our position. All I hear about is the NHS heroes but nothing about those in our osorion. Completely alone and abandoned. It’s frightening.
Good morning Faye. I passed on your post to our Helpline and one of our advisers, Clarissa, has provided the following response:

-----------------------

Dear Faye,

We are really sorry to hear of the difficult situation your Dad is in. This must be very stressful and worrying for you.

We are making everyone who contacts us aware that we are not medical professionals at this service, which means that we are not qualified to provide advice relating to self-isolation/infection control measures over and above what has been issued by Public Health England. We will do our absolute best to guide you to updated Government guidance to help you make the most informed choices possible about your caring situation.

The Government have issued guidance for Tenants and Landlords which is clear that no one should be removed from their home due to Coronavirus even in the situation that there are others living there. Please see the detail at 3.7 in the below document for more information:

https://assets.publishing.service.gov.u ... S_v4.2.pdf

Information on the housing charity Shelter's website echoes this: https://england.shelter.org.uk/housing_ ... oronavirus

I would suggest contacting the Housing Charity Shelter and giving more detail regarding the situation with the landlord and their refusal to let your Dad return, the type of tenancy, whether it's shared accommodation etc. They may be able to provide specialist advice on this. Here are Shelter's contact details: https://england.shelter.org.uk/get_help/helpline

The Government have issued new, comprehensive, guidance for those who provide unpaid care to family or friends. This guidance can be found here: https://www.gov.uk/government/publicati ... -or-family. This includes information on providing care, precautionary measures you should be taking, what you should be doing to prepare contingency plans, and what to do if the person you care for has symptoms of Covid 19. As your Dad already has Coronavirus not all of this information will be relevant but some of it will be in terms of how to keep yourself safe and avoid your Dad passing it on to you if he is still contagious.

There is NHS information here about how long a person with suspected Coronavirus and members of their household should self isolate and steps to take to avoid transmission to others outside the household: https://www.gov.uk/government/publicati ... -infection

As part of your Dad's discharge from hospital there should be a discharge assessment carried out to make sure that your Dad has the appropriate care in place. These may be less in depth at present while services are stretched. You can read more about discharge assessments and your rights here: https://www.carersuk.org/help-and-advic ... f-hospital

Social services and the NHS are still able to put support in place such as Palliative care services if the person has an assessed need and it's urgent. As part of the discussions about your Dad's discharge from hospital, your needs as a carer should also be assessed to ensure that you are willing and able to provide care and to what extent. You aren't obliged to have your Dad move in with you if you aren't comfortable with this. If you agree but understandably don't feel able to provide all your Dad's care, you should not be pressurised to do this.

I hope that this information is useful and that your Dad is able to return home with the right support in place.

If you would like further advice and information you can also email our adviceline directly at advice@carersuk.org

Kind regards

Clarissa