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Now we are to have end of life care thrust upon us? - Page 4 - 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 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.

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.

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