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.
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
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.)
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:
Information on the housing charity Shelter’s website echoes this: Housing advice from Shelter - Shelter England
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: Our free helpline - Shelter England
The Government have issued new, comprehensive, guidance for those who provide unpaid care to family or friends. This guidance can be found here: [Withdrawn] [Withdrawn] Guidance for those who provide unpaid care to friends or family - GOV.UK. 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: [Withdrawn] [Withdrawn] Stay at home: guidance for households with possible or confirmed coronavirus (COVID-19) infection - GOV.UK
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: Coming out of hospital | Carers UK
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
Michael
Thank you for asking CarersUK for a response to my post. Unfortunately I didn’t find it very helpful- disappointingly. I felt it didn’t properly address the main points raised (concerns that we are going to be expected to undertake palliative care and gaps in care provision) rather it simply contained lots of links to generic material that I am sure most of us have read before (we know to wash our hands- have been doing it for years!: my father already has the Coronavirus so we know what the symptoms are - although I appreciate others may find the links more helpful) .
I didn’t expect CarersUK to be able to answer the points that I have raised but acknowledging that there are gaps in the current provision of care and services that makes carers and those they look after particularly vulnerable/under stress at this time would be a start. It feels like we have simply been forgotten once again and left to deal with everything on our own. Terrifying in the current circumstances.
I don’t think that Carers UK are medical professionals - I had thought that they were here to provide information and support to carers and were there are gaps in existing practices to campaign and innovate to find better ways to reach and support carers.
I wasn’t asking for self isolation or infection control advice - I , as I am sure most other carers have also done, have read all the guidance issued by PHE. As the writer makes clear my father already has the coronavirus so much of the information sent was not relevant.
I have spoken to Shelter but at present , with the lack of access to legal justice, there is little they can do. I am sorry if my post wasn’t very clear but my main concerns were around the lack of palliative care and support in the community. I am fully aware that discharge assessments should be carried out I know that social services and the NHS are able to put in place support such as palliative care but , as also set out in the Guardian article, I was trying to flag that I am concerned that in the current crisis this is not being done properly and the risk is falling to carers (again). It is easy to say that we as carers should simply say no - and many of us do put our foot down but this crisis has given the NHS and local authorities extraordinary powers to ride roofshot over our views. We need support and a voice as well. These are big institutions and lots difficult to be heard.
It is clear to me that my father , and I am sure he isn’t the only one, is likely to be unsafely discharged- without care and support. . At a time when there is a crisis like we are currently facing it is particularly dangerous - life threatening!
Hello Faye
I’m sorry to hear that you didn’t find the response from one of our advisers helpful. I will discuss the points you have made with a colleague on our Helpline in the morning and then send a private message to you if there is anything else we can suggest or help with.
Michael
Does Carers UK have access to a legal specialist in social care and medical services law with whom you might consult?
Prof. Luke Clements in Leeds comes to mind but you may have other contacts?
At some point we need to reach out to seek other perspectives.
Faye’s father’s situation as I recall is complicated by his living situation in an Almshouse. Almshouse residents do not seem to have the same rights as regular tenants do: we discovered that several months ago when Faye’s dad was being threatened with eviction over his csrers banging doors and upsetting his awkward neighbour.
The forum has been very useful and supportive to me prior to the pandemic, but we are simply unable to use the same ground rules on which we could previously rely. None of that seems to apply nowadays (OR DOES IT ?) and we are being essentially fobbed off as and when it suits NHS and social services.
Business is not as normal so we can’t go by what used to work. That’s why I suggest we need a fresh set of eyes to assess our current situation.
I think we need to have some sort of “Fighting Fund” to challenge the actions of some in authority.
Faye has done all the right things and got nowhere, the trauma she and dad have been through in the last year has been frightful.
If everyone has Facebook then Michael Charles solicitor from Sinclairs is doing a live Webinair at 4.30 pm Friday regarding Social Care Duties.
I find him very knowledgeable - so will be worth watching. You can put questions to him beforehand too.
Thank you Cloudygal.
Is it on the Carers UK Facebook page or on the solicitor’s page? Please report back if you can on what the solicitor says.
rosemary
Will be on solicitors page just put in his name. You should be able to watch it if you have Facebook. Its nothing to do with Carers Uk.
Thank you Cloudygal
Thanks to Cloudygal, I found Michael Charles of Sinclair’s Law’s Facebook page. On his page there is a reference to the work of Stephen Knafler, QC.
There are two papers, published on LinkedIn:
Published April 3, 2020, Adult Social Care: The Importance of Understanding the Purpose of the Coronavirus Act 2020
Published April 14, 2020, Coronavirus and Adult Social Care Assessments
I couldn’t cut and paste the two links or else I would have done!
Important reading for all of us want to be lawyers But we just don’t have the time. Seriously though, if you haven’t already seen these two articles Michael and team, I think they’re important for us.
Articles can be accessed from this page:
You are welcome Rosemary.
Michael Charles is very knowledgeable, and whats more he fights really hard against injustice.
I am going to try and watch the webinair myself
He usually has other professionals on there too