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CHC : RATIONED ? High Time To Ask Some Obvious Questions ??? - Page 5 - Carers UK Forum

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

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64 posts
Count yourself ... fortunate ... in this context ! ... Sally ... as earlier postings in this thread clearly reveal.

Almost akin to a game of Russian roulette ... with a gun containing 50 chambers ?
To be honest, I believe that this is more about whom picks the tab up so to speak. Hubby still under section 117, so after care is free. Its between NHS and Social Services as to whom pays. Something Chris and others mention on here many a time. We have had hubbys DNR in place for years now, he made it himself when still had some capacity. Also urgent care plan in place so he now only goes to hospital if, and hoping does not happen, he was to break a bone, or something the nursing staff could not deal with. Urgent admittance to hospital via ambulance used to both terrify him and agitate him so much, plus staff there on a general ward cannot cope. Even when nursing staff were very good, the demands on their time meant they could not give him one to one cover. Mind you, last time he was in I stood ground and said his 1-1 was an assessed need and they brought extra staff in to cover.
Thanks for all your comments and best wishes. 1st meeting is 13th, 2nd is 20th, both this month.

Always a pleasure to see you post R ... when you can ... pet.

To be honest, I believe that this is more about whom picks the tab up so to speak

Its between NHS and Social Services as to whom pays.

The VERY crux of a major problem for all even when the tap is turned on !!!!!!!

Two different systems for one NHS service ... and one patient.

NO !

Not time for that broken record again ... pop pickers !

How about some Frank Zappa instead ?

.... early Pink Floyd ... with Syd ???
Oh yes Rosemary the dreaded hospitalisation. So frequent for hubby. General ward unless we were lucky and could have a side ward. Other patients, and their lack of knowledge that hubby had dementia ( why would they). Tension when he kicked off. Must admit the hospital was usually dementia friendly, but it was out of comfort zone for all.
My neighbour friend was taken into hospital last Friday. She had a poor lady in the next bed who has dementia. She kept trying to get into bed with her. So sad, and distressing for all concerned.
Will be with you in spirit on those dates. Wish I could do more.
An article from the BBC on CHC ... reality for many.

Just over a year since I started this thread ... better late than never ?

" Our life savings are spent on care that should be free. "

Thousands of vulnerable patients are missing out on NHS funding for home care that they are legally entitled to, it is being claimed.

Some families say they have spent nearly all their life savings on filling the gaps.

When 83-year-old Joyce Bryant became ill two years ago with viral encephalitis, it was a tipping point. The illness left her with a substantial brain injury and unable to care for herself.

"Her behaviour was just manic," says her daughter Lyn Timothy. "She was banging on windows. She was hitting out at my dad, pulling plugs out of the sockets in the hospital ward."

The family decided additional support was needed to enable Joyce to stay at home with her husband and applied for funding from NHS continuing healthcare.

CHC covers the cost of social care for people with complex medical conditions, if the health problem is deemed the main reason they require such help.

" Spending savings "

But despite clinical documents and videos showing Joyce's "unpredictable behaviour" - those who apply are judged according to national guidelines - the family's local Clinical Commissioning Group (CCG) found her needs did not meet its criteria.

"They said her behaviour was not unpredictable. It could be anticipated," Lyn says, adding she is unable to understand its rationale.

Her mother is now confined to bed and has been placed on an end-of-life care register by her GP due to a deterioration in her health.

Joyce's husband, Pete, who is in the early stages of dementia, has had to spend most of their savings on her 24/7 care needs and their funds are running out.

They are eligible for care home funding, but Lyn says the couple - who have been married for 57 years - have always wanted to stay together at home.

West Hampshire CCG said decisions in the case were taken by a panel of health and social care professionals, with input from Joyce's GP.

"A new application for funding can be made at any time and we would be happy to provide support," it said.

" National scandal "

Every year about 160,000 applications are made for continuing healthcare, costing the NHS around £3bn.

Lloyd Tingley, chairman of the Continuing Healthcare Alliance, says the system is a "national scandal" denying many people the free healthcare they are entitled to.

"Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free," he said.

Last year, the Parliamentary and Health Service Ombudsman received 496 complaints about continuing healthcare funding and investigated 196.

The BBC previously reported thousands of people have died awaiting an NHS decision on eligibility for continuing care funding.

Labour MP Meg Hillier, chairwoman of the Public Accounts Committee, told the programme this was "just not acceptable".

"There needs to be real political will behind this to make sure those who are eligible are getting the money they need," she said.

Andrew Farley, of Farley Dwek Solicitors, said there were "thousands of people who have been forced to sell their houses to pay for the care in circumstances when they ought not to".

He said many people did not know about the existence of the funding, as they had not been told about it, or had difficulties "navigating the complexities of the system".

" Nearly broken me "

Suzanne Morrison's son John has cerebral palsy and cannot use his arms or legs.

His continuing healthcare funding was withdrawn in 2009, leaving his parents battling with their local commissioning group for 10 years.

"Fighting for John has nearly broken me," Suzanne explains.

"Watching somebody disappear, when you know it can be stopped. It's depressing, demoralising and it encompasses every conversation I have with my husband.

"You would like to give up sometimes, but I can't and I won't. It's not what we do."

In the last month, Wiltshire CCG has concluded that John now qualifies for fully-funded care.

His parents say they now intend to claim back £300,000 from the NHS, having spent most of their savings on his care.

"I am relieved because now the three of us can have a normal life again. A family life," Suzanne says.

'Complex area'

Campaigners say the problem is due to funding cuts.

Analysis by the King's Fund suggests there has been a shift towards more people receiving fast-track continuing healthcare, usually for short periods of time, rather than the standard care - which is provided for longer, and therefore more expensive.

It also noted since NHS England was given a target to cut the projected rise in cost of continuing healthcare, in 2015-16, the number of people receiving it had begun to decrease relative to population size.

An NHS England spokesman said: "Spending on continuing healthcare is increasing and it is for CCGs to manage assessments based on demand in their area.

"There is still potential, however, to make the process more efficient and effective for patients, as the majority of people assessed turn out not to be eligible."

Julie Wood, chief executive of NHS Clinical Commissioners - the umbrella body for the 212 CCGs in England - said continuing healthcare was "a complex area", but that CCGs were "working hard to improve systems and processes to make it better and fairer for those that need it".

"In 2016-17, spending on continuing healthcare represented 4.3% of the entire NHS budget," she added.
West Hampshire - the same people who assessed mum.
When I explained that mum could walk until she developed sepsis, the nurse assessor said "we don't know that".
Why don't you ask the GP? "We don't do that".
It was clear that anything I said about my mum was going to be ignored, and the nurse was determined NOT to look at anything. Even the Critical Care Report, which listed 28, yes, twenty eight different health issues, was ignored!!
Are you sitting...…………………….. scroll down :(

… one down - successful outcome :shock: :D
One to go

Meeting lasted well over 2 hours. It was not just about CHC but a review of hubbys section 117 from when he was discharged from hospital last year to the nursing home. We went through all the criteria and he scored -

1 x severe
3 x high
6 x moderate
1 x none

Result was his section 117 remains in place so a 50/50 split, fully funded between NHS and social services. To be reviewed in 12 months if nothing happens in the meantime. That means his placement in the nursing home, and 1-1 staff from 8am till midnight continues as is.

I was well prepared with notes, copies of stuff printed from internet, info Chris has posted and to be honest I never used it. Lass doing the assessment, social worker and nurse from the home were all excellent. To top it all off, I only cried once.

Lets see what happens next Thursday in other meeting.

CPA meeting Monday 1st, as well as ESA50 to complete for brother.

To say I am mentally drained is an understatement. I may not do the hands on care but the worry and dealing with meetings, paperwork is non stop. Yet DWP now class me as a single person with no ties. That's a story for another day.....

Thank you all for your best wishes.

x x
Only half time ... Pet.

2-0 up and cruising.

What could possibly go wrong ?

( An assessor wearing a Mackem top , perhaps ? In which case , do NOT snarl or growl ... until the final whistle blows
with the three points in the bag ! )

Yep ... so far so good ... now for the second half ?

Full house on here watching your progress ... nothing new on your manor ?

H'away the lass !

( Typical ! Nick all the stuff I laboured to post and then ... not use it ?

I'll still send you the bill for royalties now owed ... having " Borrowed " most of it meself ! )
Well done indeed :)
You may not have needed to produce the information you had, but just knowing it meant you probably came across as confident and competent, even if ( as I would be) you felt a bundle of nerves inside.
The exhaustion now is the release of adrenalin build up

The battling is draining isn't it? I have a relation on 117 and its constant fight after fight after fight

Try and do something nice just for you this weekend

Well done Rosemary
I well remember the bittersweet feeling. Shouldn't have to fight when needs are so obvious.
Hope you have a restful night .(((( Hugs)))
64 posts