At last poor and unlawful CCG practice is being challenged.
"NHS organisations are facing legal action over discriminatory Continuing Healthcare policies, the Equality and Human Rights Commission warned today.
The Commission has taken its first steps in judicial review proceeding by issuing legal letters to 13 Clinical Commissioning Groups (CCGs).This follows an initial warning issued by the Commission, which highlighted concerns about NHS Continuing Healthcare (NHS CHC) policies being unlawful and breaching the human rights of patients."
"The Commission first aired concerns over discriminatory NHS CHC policies in October 2017, when it wrote to 43 CCGs demanding more information on their approach.
Following this warning, almost a quarter of those contacted are now reviewing their policies and the Commission will be writing to the others whose policies are of less concern."
Some CCGs have not responded and: "...letters have been sent today (19 March 2018) and the CCGs have 14 working days to respond, after which decisions about starting court proceedings will be made.
The CCGs not complying are:
Brent
Coventry and Rugby
Dudley
East and North Hertfordshire
Eastern Cheshire
Harrow
Hillingdon
South Cheshire
Vale Royal
West Cheshire
Warwickshire North
Lincolnshire West
Redditch and Bromsgrove
I see my CCG is on the list. Great!
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Kevin_1
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Kevin pleased to see E.Herts on list. I poke to them yesterday and they said unless John is having regular visits from nurses we cannot reapply !! Hope you have a good Easter xx
I'm sorry my memory isn't as good as I would like. Did one of your posts say you had a sympathetic Social Worker?
Was he in a care home or a nursing home before he came home to you?
Three things which might help:
First discuss with Beacon NHS Advocacy - get one of their phone appointments.
Second get the Social Services needs assessment and tell them in advance that you also want them to assess whether or not Bobs needs are within the legal limit of services they can provide. If they say they are outwith their legal limit then ask them to refer on to the CCG with that information - The CCG will have to step in.
My apologies if you have done all of this, or what you have a mind to do.
Yes, Easter is quiet but good. I have just come back from reading Lix to sleep with her stiring enough to give me a parting kiss That made my day
Anything I can do to help you with this debacle of CHC - Just ask.
Kevin that is great news. I see the whole of Cheshire fails! The very north of Cheshire appears to come under Manchester now. I hope the government takes note of this because I know they are struggling financially. However it is wrong, wrong, wrong!
Remember there were forty-three serious offenders this list of thirteen are only the ones failing to respond to to letters from the court. The other twenty-seven will need time to get their house in order. We don't know who they are.
Not before time they are a disgrace .The system is controlled by bureaucrats whose main interest is saving money not the welfare of very ill people . If they got off their backsides and stopped making decisions in committees often contrary to the assessments made by the assessors and the opinions of the medical people involved then the system might just work . Carers who are under enough stress already do not need the added stress of having to fight tooth and nail for the help which should be available under this system .
Georgepa (still seething from my battle with them )
Absolutely right Georgepa, just looking at the `family tree` of our local CCG online makes my blood boil. It is populated by people whose titles are `Quality Lead /improvement manager` etc etc !
We do not need all this extra hassle - we need help from people who care.
Once again, thank you for finding this information for us all. I am just about to launch our further appeal to the IRP (Independent Review Panel) and during my `surfing` I came across this information on my local CCG website, incidentally they are not on your list.
I believe that they have to publish replies to questions asked under FOI (Freedom of Information) and , briefly, the statistics are frightening ! For the period April 2016 to August 2017, 106 positive checklists, 86 negative. 40 of those positive cases received full funding and of the 33 cases not eligible, only 14 asked for reviews. Of these 14 cases , 0 have been found in favour of the applicant ! ONE of the above 14 cases is being transferred to IRP but decision not yet confirmed.
Check your own area CCG for similar information. Far from putting me off, it has made me all the more determined to take our appeal as far as possible.
Remember the list is only of those failing to respond to the demands of the Court. There were some forty-three serious offenders. I don't know the names of the other twenty-seven.
The number of successful applications is so small!
I shall go and check my CCG - But given they are one of the eleven I doubt they have posted this information.
This all scares me witless, I am terrified Ben will be refused funding when our review comes around, I keep reiterating this fear to Bens funding case manager and she said not to worry but I'm not convinced. As if we don't have enough to worry about, how does the normal man in the street fund double- up carers two or three times a day, respite, larger gas/electricity bills, nursing home fees and the fear of using all of our savings and potentially our home. I would like to know how they justify that a person suffering from this terrible progressive disease can suddenly become exempt from funding, they continue to need very intensive, or one to one care ; for instance, when the risk of falls is no longer such an issue because of loss of mobility. I really don't relish another three hour grilling to be told Ben is no longer eligible for funding, why oh why do we have to keep battling for something they should be entitled to. I really don't trust the powers that be and am pleased that some of the offending CCG's are being taken to task, it's a bit like planning laws they keep moving the goal posts for their own means. Every time letters are drop through the door I am expecting one to be for the first review, Ben has become more ill and difficult to care for since the funding was awarded, in that he can't do anything for himself at all. It saddens me that the care and welfare of very sick people does not seem to be the primary concern for these CCG's it's all about the budget. Rant over, I will have to keep on keeping on until the call comes, help!
Thanks Jean, I try not to take this negative view but with all the cost cutting that is going on you are bound to worry. I think my fear is being left penniless if we end up having to fund ourselves, we both worked bloody hard and to think that all of the money meant to keep us in our retirement could possibly be swallowed up to pay for his care seems unspeakable. I fear being left with nothing to live on when Ben leaves me. Being very pessimistic but my mind runs riot when I see these posts talking about funding.
Hope you are OK and having family time this Easter.
They're under fire from other quarters. Currently(as always?) they are a major political football in Parliament. There is a considerable cross part lobby demanding a complete review of Social and CCG care.
However, LA's are far more sensitive to complaints - just bang one in to the CEO and watch the firework show! (usually)
oh My lord, this is a mine field,so unfair. It is nearly 1 o’clock still awake, so tired, but sleep seems forever coming, feel like the walking dead, I just want to sleep, throat hurts ,I have had a headache for about 5 days, took so many tablets, I am rattling. Got upset with George today felt so bad when I put him to bed, he looked at me I felt so sorry, I apologised to him, such a stressful few days and I am so tired with lack of sleep, and this horrible headache. Sorry rant over. Yvonne xxxxx
I fought for my father care funding for many months before he died two weeks ago. It was a long ongoing battle, as they kept reviewing him and removing funding. Then they imposed a cap on funding his care at home. And that was only back November 2018. In the process I have learned a lot about the ordeal sick people are put through. Since the date of this article the Equality and Human Rights Commission has lifted the threat of legal action as they were "reassured" that the health authorities implicated were changing their policies, as explained in this article: equalityhumanrights.com/en/...
Unfortunately, as said, as per November 2018 funding caps are still used, certainly they were to my father. And obviously I am not alone in continuing to be a victim of health authorities illegal practices, as seen in this article: zodiaccare.co.uk/2019/02/19...
These health authorities do not stop in front of anything.
Reading the articles it looks like the commission is going to follow through with monitoring. The problem is that man CCGs' don't follow the law never mind their own policies.
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That made my day 
Question about experience with finally being free of PSP
does anyone have trouble being believed
