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CHC : RATIONED ? High Time To Ask Some Obvious Questions ??? - Carers UK Forum

CHC : RATIONED ? High Time To Ask Some Obvious Questions ???

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64 posts
I created the CHC THREAD in response to the number of posters asking questions.

https://www.carersuk.org/forum/support- ... here-35998

Before that , I did not know CHC even existed !

Slight detour in acknowledging the very first " Trawler " who kept us fed on background research and information in CarerWatch days ... a role I assumed on here on my return some 20 odd months ago.

Having created that thread , like finishing a painting , time to step back and look at the Frankenstein created monster ... even an abstract which is whatever you imagine it portrays ?

As for the academics , they have a vested interest in their interpretation ... their carees and pay cheques depend on it ... so , what price your interpretation ???

Ignore what it says , where it points ... what does it all mean ?

To me , a complete layman when it comes to caring in 2018 , it appears to be a more intense level of " Nursing " NOT freely available within the normal NHS system.

First question ... why should that be so ?

A form of rationing as the NHS has not the resources to deal with all patients and all illnesses seems to be the only logical answer.

We already see that some illnesses ... say cancer ... are treated under the NHS whilst others ... say dementia ... are not ( Demned social care ... where we come in ! ).

Given what's available within the main thread , a second question.

Why so complex in all steps ... from even knowing it exists to finally receiving the green light ?

Only one real answer ... it is designed to be so because it IS being rationed ... similar to casaulties in a battle being assessed by the medics as to who is probably going to live and who isn't ???

To even get to see a doctor would be a victory , of sorts , to many in that situation.

Spin off question ... like the Care Act syndrome ... how many entitled to CHC simply give up / throw the towel in because it IS so complex ???

I'll leave it there as I consider that rationing is the main premise ... why so is a different question.

Interestingly , Carers UK recently asked us for our experiences on hospital discharges ... my immediate reaction was that it was only one part of the bigger picture ... CHC is another part of the same picture.

In both , the knock on effect can be seen right across CarerLand.

If the NHS are rationing by design , and chucking out patients too early , WHO IS PICKING UP THE PIECES ?

Need a clue ?

Strange how sitting on a hill looking down at CarerLand gives one a clearer vision of what's really wrong than being at street level ... caught up in the daily street fighting for anything ... including food , heat and , for some , a rain proof roof over one's head ... which is what the nationwide gulag known as CarerLand has become ?

A society within a society ... once you're in , just try and get out ... and then having to leave your caree at the mercy of the System ???

Former carers ... we have our uses ???
Recently, Which gave some statistics, in some parts of the country you have virtually no chance of qualifying, in others, it's relatively easy. This is a POSTCODE LOTTERY of the very worst kind. I realised this a few years ago, from statistics issued by the Department of Health, and raised it with Desmond Swayne, my useless MP. I didn't even get a reply.
The solution is to have assessors independent of the CCCG who have to fund the care. Mum's GP told me, when I asked him to make an application for mum, that the NHS couldn't afford it. If he made the application for mum he'd have to do it for all his patients in the nursing home. Yes, absolutely right, that's what the Framework says! But he told me the NHS "couldn't afford it". I then approached a specialist solicitor, spent £10,000, to no avail, his bill just soared with nothing achieved.
As to dementia not being a medical issue, if you look at the Grogan case, then dementia IS covered by CHC, but only IF the rules are applied correctly.
Assessment should NOT be done by the CCG.
Social care does not require qualified nurses on staff. That's the dividing point, or is supposed to be.
Funded Nursing Care is to cover things like have a dressing changed, it's absolutely no substitute for someone with complex needs needing 24/7 care!
Yes, I gave up in the end. My disabled son's needs had to take priority, and I wasn't going to be any good to anyone if I had a breakdown.
Social care does not require qualified nurses on staff. That's the dividing point, or is supposed to be.

In essence , with rationing and unsafe NHS discharges , some in the carer army are taking on those roles at an increasing rate.

On another thread , I urged Carers UK to update their definition of a " Family " carer to spell out the true state of affairs in 2018.

The days of a " Fetch and carry " ... not forgetting pushing if one's caree is wheelchair bound ... family carer ended around 20 years ago !!!!

In whose interest is it to underplay the role of a family carer ????

Was a simple question like ... " Have your nursing duties increased over the last year ? " ... asked in the latest Carers' Survey ?

And , if that question was not asked , how would our own supporting organisation know that there was a problem in the first place ?

One can only see it at street level ... CarerLand ... not from ivory towers !

In a few cases , we are now like those medics on the battlefield ... making decisions which , in the outside world , only a qualified nurse and / or doctor should be making.

As mentioned on the HOSPITAL DISCHARGE thread , a problem with the potential of effecting every family carer whose caree is under the NHS for treatment.
On the CCG front , look no further :

https://www.theguardian.com/healthcare- ... -decisions

NHS commissioners risk losing sight of human cost of their decisions.

Vulnerable patients are being shunted into care homes to make easy savings.

The revelation that thousands of people could be forced out of their homes into residential care raises serious questions about the judgment of clinical commissioning groups (CCGs).

According to the Health Service Journal story, based on information gathered by campaign group Disability United, at least 37 CCGs have imposed restrictions on access to NHS continuing healthcare funding, which provides ongoing care for adults with a “primary health need”.

Around £2.5bn a year is spent on NHS continuing healthcare, with about 60,000 people receiving support at any one time.

A total of 19 CCGs have said they will not fund care in the person’s own home if it is more than 10% above an alternative – normally going into a care home. The remainder are imposing other restrictions. Up to 13,000 people could be affected among these CCGs; since 87 CCGs did not reply, the national figure could be around 22,000.

Lawyers are wary of a legal challenge, such as under article 8 of the European convention on human rights, which protects the right to family life.

Many of the rationing decisions appear to conflict with the NHS England operating model for NHS continuing healthcare, which says “treating individuals and their families with empathy, respect and dignity is at the core of NHS continuing healthcare delivery”.

Commissioners need some latitude to contain these costs; medical care provided in the home cannot be limitless. But the Department of Health’s guidance stresses that comparative costs have to be balanced against a person’s desire to continue living in their own home.

Overall, Disability United identified 42 CCGs whose responses to Freedom of Information requests on this issue gave cause for concern. In the last performance assessments, NHS England said 20 of them required improvement while nine were rated inadequate – proportionately worse figures than the overall national scores.

That gives little confidence that commissioners pursuing this approach have exhausted all other reasonable options for meeting their budgets.

Of course, this is not straightforward. Many of the choices facing CCGs trying to hit their financial targets are unpalatable, as the growing argument over the threshold for hip and knee replacement surgery demonstrates, while the best solution for some continuing healthcare patients may well be residential care.

But to deprive people of the right to live at home on the basis of a 10% limit on additional cost seems arbitrary and callous. It leaves the uneasy feeling that a vulnerable group of patients – many of the recipients of continuing healthcare have brain injuries, significant disabilities or are dying – are being shunted into a care home because it is an easy saving. In their desperation to find cuts, commissioners are in danger of losing sight of the human cost of their decisions.

Continuing healthcare sits on the fault line between the NHS and social services, and access to it has long been a source of controversy, notably for patients who have had serious strokes. Many families are left baffled by the fine distinctions drawn between medical care on the one hand and social and personal care on the other, understanding only that it is a device for the NHS to shunt costs on to the care system by deciding that the patient’s needs are not primarily medical.

Now it appears that those who are fortunate enough to meet the stringent criteria for continuing healthcare risk being deprived of rights and choices. The underlying problem is that CCGs simply do not have the managerial, analytical or clinical firepower to make care systems lean, efficient and integrated, or to drag funds out of hospitals and into community services, so they are reduced to managing their finances by drawing entirely subjective lines on a spreadsheet that cut patients off from care.

CCG decisions about who can have services such as continuing healthcare, various types of surgery and IVF are dressed up in the language of local choices, but in reality it is largely a matter of luck which cuts commissioners happen to choose. Forcing people to leave their home looks a bad choice.

Bottom line ?

Rationing ... pure and simple.

HI Chris

Have been on Carers UK a while, but agree with what you say. My Mum has Vascular Dementia and I was main carer (don't live with her). Then she fell and broke her neck and spine. No spinal unit beds for elderly non operative. So braced, after suffering double pneumonia, she spent 5 weeks in hospital, we were then called to ,discharge meeting.

Well that was a journey on CHC, even with injuries as such and in a brace, no surprise the way they answered the questions, Not enough A's or B's. Would we take her home. Question back "does she think she would cope at home"? Answer "No". We were put under immense pressure to make decisions quickly in said meetings. Thanks to some advice from here, I was well prepared.

We agreed she could be moved at NHS or Social Services cost to a non hospital facility until such time had elapsed, that there was a long term prognosis of her needs. In the meetings I always remember a comment on here that said " you are under no obligation to be a carer". After some weeks the hospital and SS said that they were stuck and would I take her home. I asked them to sign to say that they considered her to be safe, they refused. We were even asked if her home was still available to her??? So she remained in hospital for another 9 weeks. Yes I think the common term is bed blocker. The funding is ridiculous and so are the categories. Not everyone can be pigeon holed into boxes.

Once the healing time had elapsed the brace was removed and she came home three days later. Now my question to "NHS and SS is what can you do to support me to support my Mum" one year later we are still doing our best.
Thanks Bernadette.

A deeper answer to a relative straight forward observation.

Rationing ... with the standard range of products being offered by the NHS , and to qualify for the premium range , CHC , an assault course that even the army would approve.

Dealerships ... delivery erratic , shortages in some products , surpluses in others ... might have to travel 50 miles to find the product you need off the shelf.

For some with a thick wedge , paying over the odds will ensure quicker delivery ... private sector as opposed to the NHS.

Social care ... not the NHS's responsibily even though it is an annex.

Therein lies the root cause of the problem ... for you and any other person reading this post.

Only by recombining the production line ... NHS and social care ... raw materials at one end , finished car being driven away at the end ... will anyone eventually see an improvement.

Buyer taking delivery will be pleased ... unless said car produced by " British Leyland " ( Aka NHS ) with untold number of faults needing to be fixed ... some NOT covered by the warranty !

Social care model ... now sub contracted to the LAs who , for one reason or another , taking on too much production with the resources available ...in turn , sub sub contracting work to family carers , the real heroes in all of this.

Analogy ... funding ... whoops , no monies to pay for a vital component breaking down half way down the production line and ... the whole production line will gradually grind to a halt.
More confirmation from an impeccable source ... Professor Luke Clements :

http://www.lukeclements.co.uk/another-f ... c-numbers/

Another fall in NHS Continuing Care (CHC) numbers.

The CHC figures for the last quarter of 2017-18 have been released.[1] They show that in April 2018 the total number of people eligible for NHS CHC in England stood at 54,411. Of these, 37,114 were eligible for standard NHS CHC and 17,297 were eligible for Fast Track NHS CHC.

In the last three years the number of people eligible for NHS CHC in England has dropped by almost 15% (a fall of over 8,500 – from 63,000 to 54,411).[2] During this period the NHS has shed over 8,500 overnight beds.[3] As I have noted in an earlier ‘post’ the English population does not appear to be any healthier and the fall in CHC numbers is almost certainly attributable to a change in the way Clinical Commissioning Groups assess for eligibility.

There is no average ‘cost per day’ figure for an NHS bed but it is safe to assume that it is more than the average daily cost for nursing home resident – which is about £110.[4]

If one ignores the loss of overnight beds, the figures suggest (if my calculation is correct) that since 2015 the NHS has shunted at least £340 million of costs per annum to social services authorities and families – ie over £2 million in each social services authority area. If one includes the loss of beds, this figure doubles.

[1] NHS England NHS Continuing Healthcare and NHS- funded Nursing Care Report Quarter 4 Report, England 2017-18 (NHS England 10 May 2018).
[2] Health and Social Care Information Centre NHS Continuing Healthcare, activity statistics Quarter 4, England 2015-16, experimental statistics Annex 1, report tables and subnational data (HSCIC 2015).
[3] NHS England Average Daily Available and Occupied Beds (KH03) Time series Feb 2018 – a fall of 6% – from 136,946 to 128,413 – and the occupancy ratio has not changed.
[4] LaingBuisson, Care of older people. UK market report. Twenty-seventh edition 2015.
APOLOGIES ... missed cross referencing a snippet of an article posted on another thread , May 2018 , onto this one ... highly relevant !

NHS guidelines state that at a full reassessment, a team of professionals should try to see the care recipient in person. Family members should also be invited to attend and given 'sufficient' notice.

However, some families say only one nurse attended their meetings, which means some funding decisions are being made by people who have never even met the patient concerned.

'I now rarely attend assessments where a full multi-disciplinary team is present,' says Fiona Lower, a former nurse who now helps families at reassessments.

'The nurse is unable to make a recommendation on their own; a recommendation is made following a team meeting at an office. This therefore denies the patient, the family and advocates the right to comment prior to a decision being made.'


https://www.carersuk.org/forum/support- ... inks-32532
Thank you so much for your posts on this... we have been going through this (again) with my Dad. He has been yo yoing in and out of NHS funding for over a year now.

We had a full reassessment in July with CHC Commissioning Nurse and Social worker. The nurse had 11 years of working with people with my Dad's condition. Met Dad. Went through the check list. Indicated his recommendation was that Dad should get full funding, but explained the decision would be ratified by the multi-disciplinary team, but there was no reason to think they wouldn't go with his recommendation....

We waited nearly 2 months for a decision and still had heard nothing. So my sister chased them. It took leaving 3 messages over the course of a week to be to speak to someone. When she was called back she was told Dad had been denied funding by the team who hadn't met Dad. Through pure frustration she lost her temper and told them we would be appealing, scrutinising their processes. writing to our MP etc, etc...... Within the hour she had a call back and mysteriously full funding has now been granted. So no one can tell me that this isn't being rationed. My experience is that the answer is "no" until you kick up a stink. They seem to hope you will die or give-up, which I am sure a lot of people do. The system lacks transparency and is utterly unfair.
Your welcome , Sally.

Feedback is useful for my endeavours with a very difficult audience , which is dwindling by the week.

If only others would just add their experiences ...

There again , this is Carerland , and apathy rules in the wastelands.
64 posts