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How can this happen - Carers UK Forum

How can this happen

Share information, support and advice on all aspects of caring.
Just seen this news story in the Daily Mail online. Defies belief.

http://www.dailymail.co.uk/news/article ... homes.html
I keep banging on about NHS Continuing Care Checklist Assessments. Hospitals are required to do them before frail elderly leave hospital, but it is clear from recent postings here that they are not being done. An assessment should involve an OT doing a home visit with the patient to check that it is suitable, aids, adaptations etc. Patients are supposed to have proper care plans drawn up before discharge, but clearly are not. Where a family member is involved, they can advocate for their elderly relative. Not everyone has a relative to help. I have had personal experience, on a number of occasions, of hospitals failing to tell me important things, or ignoring me completely because I didn't agree with them! If I, with 40 years experience of disability, can't always get my voice heard, what hope is there for others? Hospitals must be made to do assessments properly.
In the Guardian too:
http://www.theguardian.com/society/2015 ... k-of-care-

There is total ignorance, isn't there? I keep thinking about what happened to us in 2013. I was living in Germany and I came back to help my eldest brother who was caring for the other brother, was a diabetic and amputee and had a toe amputated in hospital, but he couldn't get back to normal despite the toe healing well. I had to go back to Germany after three weeks and my brother then died of a heart attack a few days later (I had had 111 check him out too). None of us had any idea of the six weeks' help you should get. There were carers coming in to wash the surviving brother and heat up a meal, but there was no help whatsoever apart from that - it never occurred to me it was available, and certainly not to two 80-year-old confused men. Some sort of proactive advice service seems needed.
Is this an issue that Carers UK could take up 'officially' ie, at official levels with the ministries responsible?

In Cancerworld, there is HUGE pressure on hospitals NOT to breach the Two Week Wait requirement for patients referred by their GPs for suspected cancer, ie to be offered a hospital appointment in that time frame. I know from our local cancer manager, and everyone else in the NHS side of Cancerworld, how much they are hammered if they breach! (Similarly with the four hour wait time in A&E).

The hospital trusts really do 'run scared' of breaching on these counts.

I would suspect that UNTIL they are similarly hammered for breaching in terms of unsafe discharges and having gone through the legal requirements BB et al outline, then it simply will not happen.

Hospital trusts have no spare money at all, and only if they are hammered by their chief executives who are themselves hammered by central govermnent etc, do they actually act.

It's horrible, painful for the very often hardworking and overworked staff involved who actually have to make the 'non-breach' situation happen, but if that is the only way to get the service to patients that patients needs, then so be it. Hopefully, it will end up by drawing down extra funding as the only way to non-breach.

So, as I say, I think Carers UK should call for similar 'breach-hammering' to occur if unsafe discharges are made, or the discharge assessments not carried out etc etc , all the things that are well known, grimly, on this board.

It works in Cancerworld, I think it works in A&E (certainly my own experience of A and E indicates that!), so it can work with unsafe discharges. But we have to PUSH for it.

From what I recall, I believe the TWW (Two week wait) urgent referral system came about when a Cancer Tsar, Mike Richards, was appointed some years ago - maybe the same needs to happen for the (predominantly) elderly/disabled/infirm who are going through the kind of nightmare experience that Sonia writes about on her thread!
There is a information on hospital discharges on the main website here:

http://www.carersuk.org/help-and-advice ... f-hospital
together with downloadable factsheets.

Jenny wrote:
Is this an issue that Carers UK could take up 'officially' ie, at official levels with the ministries responsible?
To be honest Jenny I can't see this issue as being one that CUK could effectively campaign on - the organisation is there primarily to support Carers' on issues that directly affect them (benefits, isolation, stress etc) - not necessarily the issues that affect their Carees. However, I do see that an 'unsafe' hospital discharge affects everyone in the family, my own Mum was subjected to more than one.

Regrettably, with cuts to budgets, I can only see the situation getting worse and my own feeling is that, we, the family should be writing to our MP's demanding that they take up this issue.
It is very clear from recent threads that elderly relatives in hospital are being dumped on relatives, without proper procedures in place, regardless of a carers ability or willingness to care. Sonia's thread highlights this - faced with mum being discharged home, doubly incontinent, without any of the proper procedures being followed, and a threat of a £550 fine if she doesn't comply!!! Carers UK is an organisation of carers for Carers. The last few months have shown that again and again carers are being ignored. Surely those responsible for publicity in CUK could at least highlight the problem?
Reading the article in the Times today on this same report, it seems that the blame is being put on lack of communication between the two different services - the NHS and Social Welfare. Presumably these answer to different central ministries and ministers. Loads of buck passing and general 'NMP' (Not My Problem) going on.

From my own experience in Cancerworld, one of the things that really, really came home to me when my husband was critically ill in end stage was just how 'alone' one is (I felt far more 'alone' than I did coping with MIL, in fact). That means that all the 'information flow' is 'one way only' - ie, it comes from the NHS, to me (my husband was unconscious so totally out of it - hence my 'aloneness') (very scary)

Because the information flow is one way only, from the NHS to me, I had absolutely no way of 'assessing' the information I was given. With hindsight, of course, I can now see all sorts of things I should have asked, and done, and said, etc etc.

From the posts I read here, this happens over and over again in Carerworld - carers simply 'passively receive' what the NHS/SS tell them, without any knowledge of what the 'actual' situation is, or what their entitlements might be, etc etc etc.

As BB has pointed out, if even someone like her, with huge and long term experience of the NHS/SS etc, can still be 'caught out' in some situations, then the rest of us 'naïve users' of the service have little chance in knowing our rights, and what the 'correct procedures' are. Given that carers are under stress, that there is this endless grey area about whether carees are or are not 'legally capable' of making their own decisions (just wanting to go home, saying their daughter will look after them, not wanting to make a fuss or just being grateful for anything and everything, or not wanting 'charity' (!), etc etc), it just compounds the sense of helplessness and confusion that seem to overwhelm all too many Carers in Crisis (as the Sonia thread so horribly illustrates.) Add to the mix carers who have their own health problems, or carees with MH problems, helicopter relatives etc etc etc.....

I do appreciate there are limits to what an organisation like CUK can do, but lobbying for a Care Czar might be possible??? A Care Czar could then create the necessary 'hammer' that has worked well in Cancerworld.

We know the problem is only going to get worse, with the ageing population, increasing numbers of people with severe MH issues, and, of course, cut to services as well.

Sorry, I know I'm just saying what we all know already, and have done for ages. News articles are published, there is a flurry of 'outrage' then it all subsides back into the mud again.

But I do think a key problem is that hospitals have no incentive to carry out the necessary procedures for safe discharges, and every incentive not to! (ie, just to throw people out of hospital ASAP, to free up beds!). The incentives have to be reversed, as they have in Cancerworld with Two Week Wait targets, so that it is 'more unpleasant' for a hospital to breach than to non-breach.....
To me the problem is that Carers UK are very concerned to not rock the boat with the government and that is why they have been rewarded by said government. This charity do not represent carers only their own charity in my opinion - especially those of us who are heavy end carers.

Eun
I agree Eun, you (and your husband) are in a simply ludicrous situation, unable to have respite, having to do shifts in hospital, for heaven sake, because no one else knows how to look after him properly. I feel sure that if CUK took on one or two case per year to sort out, things would get a lot better a lot quicker. I've never been a fan of taking what I was given without challenging it (as if you hadn't gathered that already!!)
In my situation there are no relatives, these are often single elderly people living on their own, there is no partner, there are no kids living in to help, there are no relatives living nearby.
It is friends and neighbours that are having little choice but to help.

To give my example Mr Smith is in hospital, just had an operation, I go and visit Mr Smith to drop off some magazines, nurse sees me, eyes light up. You know Mr Smith don't you he is ready to go home, you can take him home can't you (saves an ambulance home).
So 10 minutes later I am taking Mr Smith home and his suitcase.
How about what extra help will he need, how about his discharge plan, how about his carers, will they turn up tonight? will they turn up tomorrow? No as no one has contacted them.
Myself and another neighbour end up looking after Mr Smith most of the evening food etc.
And no his carers didn't turn up the next day either. Surely that nurse should have co ordinated and told someone Mr Smith had gone home.