NHS Continuing Healthcare - is it worth the fight?
Care To Be Different asks whether NHS Continuing Healthcare is it still worth the fight
In May last year I wrote an article about the difficulties families continually face securing NHS Continuing Healthcare funding.
I also highlighted the palpable anger and despair families feel at the hands of a care system that often seems to care very little. In that article are also some tips and strategies to help you with NHS Continuing Healthcare.
It will come as no surprise to many people that the situation hasn’t got any better. Many would argue that it’s now even worse.
That said, however, we still hear every week from families who have succeeded in getting NHS Continuing Healthcare funding. Almost universally, the feedback these families give is this:
- It’s vital to be well-informed in advance of any Continuing Healthcare funding assessment.
- It’s vital to be one step ahead of Continuing Healthcare assessors in terms of knowing how assessments should be conducted, and knowing what’s right and what’s not.
It is the oldest generation who have paid into the NHS system for the longest. They did that with the promise that the NHS would support them with healthcare and nursing care should they need it. That was the deal.
And so when politicians and others say that ‘we just can’t afford it now’ this surely misses the point. Older people who need healthcare and nursing care now have already paid for it. What’s more, it is NHS care that is clearly prescribed in law.
Sadly families often find themselves fighting tooth and nail to secure this state healthcare and nursing care.
And so the question is…
NHS Continuing Healthcare – is it still worth the fight?
As I mentioned in my previous article, the NHS Continuing Healthcare situation got noticeably worse after the NHS ‘reforms’ of 2013. In addition, the abject failure by successive UK governments to properly address the care funding system in England has led to a system that now seems to be on its knees. It is the most vulnerable people (and yes – those are the people who have paid in the longest) who are now being asked to pay all over again when assessors deny Continuing Healthcare funding.
It’s difficult to predict the future, but given the massive costs this current government has now committed itself to in relation to Brexit, the picture is hardly rosy for healthcare funding in general across the NHS – not to mention social care.
So what’s the point of my article?
It’s three-fold:
1) I want to reinforce strongly that people are still securing NHS Continuing Healthcare funding – every week. The funding is still there. Nothing has changed in the way it’s assessed. The law has not changed either – and the Coughlan case still stands.
2) The best chance you have of also securing the funding is to know the Continuing Healthcare guidelines and eligibity criteria inside out. Make sure you also understand the strategies you need to adopt at assessments and appeals. The information on this website will help you.
3) Be vocal about NHS Continuing Healthcare and the ongoing attempts by the NHS to deny people what they are legally entitled to. Keep going with your calls and emails and letters and complaints to your Clinical Commissioning Group (CCG) and to other relevant bodies. Make your case public through the press if you feel comfortable doing that. Read some of the tactics you could adopt if you’re at your wit’s end.
As well as those tips, consider these as well:
- In any Continuing Healthcare assessment, make sure YOU run the meeting. Don’t be railroaded into agreeing with whatever the assessors say. If they are rushing through things, make it clear you expect every relevant point to be properly dealt with. Tell them you will be taking further action against them for any breach of the Continuing Healthcare guidelines and/or the law and/or any breach in their own codes of conduct (see next point).
- Report assessors for any breaches of their own codes of conduct. See this link for the Nursing & Midwifery Council code of conduct. See this link for the Health and Care Professions Council’s (HCPC) standards of proficiency for social workers in England.
- Challenge everything that care funding assessors tell you that you know to be wrong. Ask them to back up what they’re saying by showing you the page and paragraph reference to support what they’re saying. If they can’t do that, what they’re saying may not be true. Use the ‘search and find’ function on your computer to find your own way around the various Continuing Healthcare documents.
- Make sure your MP knows what is going on. Some still don’t seem to understand how care fees are supposed to work! Some are proactive, others sadly are not, but it still may be worth approaching them.
- Sign every relevant petition you can – for example on the parliament.uk website or on other petitioning sites, such as 38 Degrees. Alternatively, start your own.
- Write to the press if you feel comfortable doing that. Make your feelings known and let people know what’s going on.
- Write to the Head of Adult Care at your local authority (LA) and ask whether he/she realises how much the NHS is illegally passing the financial cost of care to the LA. LAs are cash-strapped – and so clawing back funds from the NHS seems an obvious way for them to preserve at least some of their budget.
- If your social worker does not seem to understand NHS Continuing Healthcare, educate them about how Continuing Healthcare is supposed to work. Many social workers don’t seem to know that care funding can be entirely an NHS responsibility. As a result many seem to simply agree with NHS assessors when they’re told ‘it’s a social care matter’. And yet social workers have a duty under the Care Act to refer people for Continuing Healthcare assessments.
- Be persistent – always.
It’s not easy, I know. Indeed, it can be exhausting. Four long years fighting for my own parents taught me that. Determination and a refusal to be bullied by those in the NHS Continuing Healthcare system is vital.
But most of all, hold on the knowledge that – despite the difficulties – people are still securing NHS Continuing Healthcare funding, and some families are even successful within just a few weeks of starting the process.
Read as much as you can. Browse the many articles and comments on this website, including these.
28 links to help you with NHS Continuing Healthcare
How to get started with NHS Continuing Healthcare
It is just too stressful, trying to fight them. The assessors lack proper training, & the head assessor is usually someone off the panel who makes the decision. They totally disregard the point that they are making their assessment based on managed needs. In our case, the Social Worker at the meeting didn’t even know the person they were at the meeting for – they had only met them that morning, as had the head assessor & the Mental health worker. It was all based purely on notes from the care home & how she was that day. We fought them on every point & in detail – however when we challenged them & said that the person they were assessing had to be virtually permanently comatose, they agreed….It is a complete shambles 🙁
Entirely thanks to Angela and her website we secured Fast Track funding. I am persuing the ‘manager’ (called a verifier)after our scores were downgraded twice!
She refused to send me a copy of the assessor’s handwritten notes saying they had been destroyed as they were a paperless Dept!! I have managed to get that ridiculous policy changed so notes will be kept until an assessment has been signed off.
Our case has been raised in the council chamber and I have been in touch with the National Audit Office (NAO) as suggested.
Recently my husband was allowed home from AandE because we had a live-on carer (from Fast Track funding) thereby saving the NHS £3000p per week and a vital bed.
Keep Battling On. Don’t give up and don’t be bullied by these managers who have probably never even met the applicant. Use all Angela’s advice.
FB
Yes Angela it is worth fighting for, unfortunately as in my case we are not up to it , the shame is the few of us that are left who put our lives on the line in WW2 fighting for democracy are now end of life. We are in a completely different world , our lives being controlled by so called professionals who are so unprofessional and make the rules up to suit themselves. Saga reckon they can put ten years on your life with a holiday I reckon social services will quickly take it off with all the assessments.
Good luck to anyone who is up for the fight.
I have secured Continuing Healthcare (CHC) for my husband who has FTD dementia, for day care only in the local care home which he enjoys. I feel he is ready to go into another better care home full time but do not want to loose the funding I have at the moment. Any ideas please.,we have only just managed to get funding after applying last summer.
We tried for Continuing Care (CHC) for our mother who though unwell when she went into the local hospital caught e-coli whilst there which totally changed her. She couldn’t walk and became totally incontinent. The social worker who headed up the first and only meeting had only met mom that morning. I argued with him because the nurses had put down that mom had eaten all her lunch on the previous Sunday and this is what he wrote but I was with her all that day and she didn’t touch her lunch. He refused to put down what I said claiming that this is what the nurses had written so must be right. No amount of disagreeing would change his mind and this also happened with moms incontinence – the nurses had written that mom used the commode for her toileting. This was so untrue, mom could not get out of bed.
I know nursing staff are under a lot of pressure and I would prefer them not to feel in details of a patients abilities if they don’t know. No amount of me argueing with the chairman would change his mind.
Mom passed away last week and I still feel she should have had Continuing Care. I was told that even though she died this didn’t constitute her requiring CHC this I understand. They needed the bed at the local hospital and needed her out and everything was so rushed. It’s not about the money to me but the fact that her last few months were not as she would have wanted because of her being contagious with e-coli.
It all makes me so angry, but moms at peace now. Gill.
This is where the money goes rather than to the people who really deserve it & need it. This is a report from the Telegraph
“More than 600 health quango chiefs on six-figure salaries amid NHS cash crisis”
http://www.telegraph.co.uk/news/2017/03/05/600-health-quango-chiefs-six-figure-salaries-amid-cash-crisis/
We fought for Continuing Care for my mum and felt we had a good case. At the “Review”, the social worker who turned up and the head assessor had never met mum before and didn’t know anything about her or her condition. We fought point by point all the way through the meeting, but despite getting high scores in several areas, we were told at the end of the meeting that we’d been turned down! No explanation given other than not justified! Basically the scores meant nothing!
We were prepared to fight and make an appeal but her key worker had spoken to mum prior to the meeting and told her she would have to move to a different floor in the Care Home if we were successful. My mum, being not one for change, then announced that she didn’t want to move so we felt we’d no choice but to give up, for her sake! From the Care Homes perspective, does it cost them more for a Nursing bed rather than a Residential bed? Just wondering why the key worker would be against us!
I have been attempting to get Continuing Healthcare (CHC) for my father since March last year and have now given up.
I feel an immense sense of relief. It was making me ill.
My father was discharged from hospital without being being assessed and it took until September to get a Checklist done. He scored highly enough to go on to a full assessment but the Community Psychiatric Nurse ignored the rules and decided not to. The CCG have backed his decision that a second Checklist is needed when my father is at his ‘optimum’, ‘stable’, ‘medically fit. As to when my father will be deemed to be any of these things is a ‘clinical decision’ which they will make at some point in the future. We are still waiting.
No-one involved has followed the CHC guidance, most have been ignorant and nothing has been done properly. But still I can do nothing as I cannot force ‘them’ to carry out the full assessment. Believe me, I have tried. I have pointed out their errors and mistakes, sent letters and emails. I am simply fobbed off with a couple of sentences that do not address anything I have raised. Since the last round of communications I have heard nothing at all. I am just being ignored. There is nothing I can do. In desperation I contacted my MP – she has not even replied.
As Angela says in her article people like my father have already paid for their NHS care, through a lifetime of National Insurance Contributions. It is this generation too that voted the NHS into existence. Many like my father were still serving in the armed forces at the time, young and fit and healthy. They did not need healthcare or the NHS back then but were happy to vote for it and pay for it and to go on paying year after year. Now they finally need it the NHS is no longer there.
I feel I should go on fighting. I know what should happen. I am well equipped and well informed and felt initially it was just a matter of knowing enough to ensure the proper processes were followed. But I can’t even get the process started. I paid a company that claimed it was a specialist in CHC for support. They have asked, as I have, for an assessment but the CCG ignore them as well. The specialist company tells me they cannot force the CCG to carry out an assessment.
My mum was assessed on 16th August 2016, the results of which were given to us 69 days later. I informed the CCG that I wanted to appeal. We were invited to a meeting where a fast track assessment was agreed. By the time this had taken place and a decision was made my mum had died. Continuing Healthcare (CHC) was granted for two weeks prior to my mum’s death because “it was clear from that day that she was dying”. The appeal is still going ahead as I stated that CHC is not based on when you are going to die. The last assessment referred to attached reports which for me were not attached and I have had to pay £100 to get the reports released – although I have still not received them! Every document we have received has errors or omissions. My mum died 3 months ago but the battle continues…..who supports those people who are unable to fight or indeed comprehend the workings of CHC?
It is worth doing, but ensure you are mentally and physically fit when you start the process, and that you are either willing to put in many hours researching the National Framework, Practice Guidance, writing letters, making phone calls to numbers you’ll be doing well to discover and get answered, and using Angela’s book, or are able to pay to instruct someone well informed to act on your behalf. There is absolutely no point in approaching this process half prepared. In my experience, Social Services and all aspects of NHS know next to nothing about Continuing Healthcare (CHC), and how it should be lawfully be assessed and administered. For the heads of CCGs and Commissioning Support Units (CSU) and Adult Services it is largely in their financial interest to keep “Ground Level Staff” in this state of ignorance. Social Services seem to be barely up to speed on The Care Act 2014, and so are more than happy to play Pass the Buck around their own departments with your relative, and then widen the game by playing the same game with NHS, so expect little support from them.
Understand that most of these people don’t care. Some do, but most don’t, so never expect to appeal to their better nature nor expect them to behave with respect, kindness, integrity or decency towards your relative or to your concerns. There is no substitute to holding them to account to the established rules, Framework and Statute, although some are so arrogant or ignorant, they will attempt to ignore that too!
The health system is now designed to employ plenty of semi literate uncaring people, often with no health care experience, on 6 month contracts who will treat your case as an imposition on their time. They object to answering the phone, replying to letters, or doing anything other than deeming your case an “Inappropriate Referral”, which frequently indicates the low level of their own knowledge and intellectual curiosity. Endless battles at this level are infuriating and tiring, but contact with the top of the pile sometimes works – especially when you can cite specific and obvious breaches of The National Framework etc. or can reasonably threaten personal responsibility for their omission. No business with this level of financial turn over could operate like this “In the Real World”, and no “Social Care” department would avoid Trade Descriptions prosecution when they behave in such an avoidant and uninformed way.
My final suggestion is to avoid getting into the Appeals process wherever possible. Prepare well for every assessment, communicate clearly and with all concerned, keeping accurate records, and bring failure to follow process to light along the way, and at the highest level, so you avoid moving the sad and sorry game deeper into their own territory.
We have been awarded and retained CHC for our relative, but it has taken 2.5 years, and the claim for years un assessed and when the care was of very poor quality remains an ongoing matter.
I reached a point when I could no longer tolerate my relative experiencing low quality care, inadequate communication regarding their care, and being ignored by Social Services primarily because relative was self funding and they were self serving.
We all deserve better.
Get informed. Get angry, and get even.
My mothers claim for chc has now gone to NHS England, as she was refused twice. I have spent the last 3 months trying to get the notes sent from the ccg to NHS England. This has now been done. However the excuse from the CCG for the delay was that the care home notes were incomplete. If this were the case how could the original panel have made an informed decision. However I am not giving up!
Well said Jenny. Complaining to people higher up the chain helps and, as you say, knowing the Guidelines and the law is key. It’s a absolute disgrace that vulnerable people are treated like this by these so called managers. We fought, we won and I am now in hot pursuit! I also found most of the lower level staff unable to spell, write an email or be intelligible on the phone. Most disturbing for me was the arrogance of the ‘manager’ in our case that she knew better than the clinicians involved.
FB
I agree that it is absolutely worth battling on, but it’s easy to say and such a challenge to achieve. Anyone who goes for it – themselves, their family or other representative – is doing so at a time when our loved ones are suffering and probably already worn down and anxious. The Continuing Healthcare (CHC) process includes so many hurdles to be jumped, and it’s never-ending. Our mum is now receiving CHC – which she was awarded at the first attempt. We are so grateful to the efforts of websites such as Care To Be Different – they equipped us with all the information we needed about mum’s rights, how the process works, and enabled us to put together a strong case. Some aspects of the Initial Checklist and the Decision Support Tool (DST) meetings were good – mainly because we’d done our homework beforehand and came with a ready prepared document setting out in detail the family’s evidence for each of the domains at both stages. At the DST meeting, we made sure the assessor looked at our comments in domain 12 too. We also made sure the DST meeting included a representative from the Dementia Rapid Response Team who were working with mum at the time, as well as the care home and social services. As others have said, the assessor had never met mum, and spent five minutes in her company while he talked to us before we withdrew to a separate meeting room. The social worker was very supportive – the cynical side of me says it was in the local authority’s best interest to get the funding to come from the NHS. She had met mum briefly just a day or so earlier, but her experience, knowledge and support in the meeting were invaluable, especially when the assessor tried to downgrade mum’s needs in one significant domain. But of course, it’s not a done deal. In mid-April, mum will be having her three month review of funding so who knows what the future holds. It’s exhausting and time-consuming. And the impact on our 89-year old dad has been enormous and unhelpful. We still haven’t received the outcome in writing from the CHC team since the DST on 30 January and the CCG decision the following week, so that’s something else to be chased up. Something we learned from the meeting: make sure you get clear direct contact details from the CHC assessor and test email addresses/phone numbers before the meeting ends just to make sure they’re accurate. Also, make sure you photocopy the notes taken by the assessor. Our next hurdle was to find a suitable nursing home. Mum’s particular combination of multiple health conditions means that she presents quite a number of challenges. Many of the homes we approached said they simply wouldn’t be able to manage her without additional funding for 1:1 care. We have found a reasonably local home which has been very welcoming, but we are keeping a close eye on their capacity to meet all her health and personal care needs appropriately and effectively. Like so many others, mum and dad have never been “takers” and all their lives have paid their taxes and national insurance contributions into the UK system. We dread to think what a predicament they would be in if the two of us, their children, were not stepping in to represent them and fight their corner now that they are frail, elderly and so very very vulnerable. We are tired and our capacity to continue in our places of work has been affected which in turn has an impact on our earnings and pensions. Don’t get me wrong – we’re doing this for mum. She has fought for us all our lives and would never give up on us. Now it’s our turn to do the same for her, but it’s draining and, frankly, shouldn’t be necessary to worry about whether she will continue to receive the support she clearly needs and for which she is undoubtedly eligible.
I think that unfortunately it may depend on how the representatives interpret the guidelines for the Decision Support Tool (DST). If they stick to it to the letter, with no flexibility – as our head assessor did, then there is no possibility. We went armed with a 24 page document we had put together from information in the booklet, website, search engine which substantiated why we felt my mother-in law should score high in the majority of domains. She is in a nursing home, doubly incontinent, suffers from advanced heart failure, totally bedbound, has advancing dementia, has recurring bladder, kidney & chest infections, has to have medication administered (inc phenobarbitone which is a controlled drug & automatically scores high in the medication domain) & may have to be helped with feeding. Yet they said she did not qualify, despite us putting up excellent arguments for each domain.
I’m not sure who to fight! I would be grateful for any advice. Was clueless about Continuing Healthcare (CHC) and had no idea partner was screened 2 or 3 times over a year before she being awarded CHC (she has a brain injury and doesn’t understand). Health Trust failed to follow most of the National Framework and have kept no records of prior screenings, etc. We made a formal complaint and it has apologised for their many faults. She’s missed out on one year of CHC as a result (her support needs have remained consistent) + our family has had to help us financially because I’ve been her full-time carer because of not getting any support. How do we get backdated CHC? Is any way easier than the other for us? Is any way more likely to be successful given what has happened? Can we get redress so we can repay our family for their financial support? I’ve considered:
1 Request Trust to backdate CHC + pay redress.
2 Complain to PHSO if Trust refuses, requesting backdated CHC + redress.
3 Retrospective review.
4 All of the above
I’m not sure where to start! If anyone can advise then I would be very grateful. Thanks.
My wife and myself have POA on my father in law who amongst other things is a dementia sufferer. When we started the Continuing Healthcare (CHC) adventure in November 2015 (father in law) wished to be cared for at home.
We began the process with a flawed CHC checklist which was redone after our complaints to the hospital. A Multidisciplinary Team (MDT) meeting was ‘hastily’ arranged by the CCG for a few days after the checklist was completed.
More worryingly we began to communicate with the hospital and CCG co-ordinator telling them in no uncertain terms that the hospital documents they were relying on were incomplete/innaccurate and being falsified.
On every occasion we highlighted these issues during the last 1 year 2 months it has been ignored completely by the CCG including the chief officer. Even when we produced a letter of apology from the hospital chief executive regarding the ‘errors/omissions’ in the hospital documents the CCG refused to stop the MDT meeting from taking place.
The co-ordinator from the CCG told me it did’nt matter if the records were not complete/innaccurate/falsified as even if we won CHC funding the CCG would not under any circumstances allow funding for any care at home, they had a new unpublished policy they were following instead of the national framework.
When i asked for the policy they refused saying it was unreasonable for me to request it! I got it eventually by a freedom of information request.
Anyway to cut a long story shorter the MDT meeting took place. We told them we wanted to bring a note taker with us so we could concentrate on the meeting.
12 hours before the meeting this was refused as unreasonable and we were told we could not take any notes at the meeting.
We obviously protested in writing and at the meeting but funnily enough the written protest presented to them at the meeting is not mentioned in their documents.
At the MDT meeting the CCG brought along the lead commissioner for appeals (the person we would need to complain/appeal to if funding was refused). When we asked why he was involved at the meeting we were told it was because we had complained so much already.
We stated this was not acceptable as this person could not be considered impartial in any appeal process due to his participation in the MDT decision making. We were told it was happening no matter what we said.
The funding was unsurprisingly refused as father in laws needs were not ‘complex’ enough.
We have now spent 1 year 2 months asking for the ‘local resolution’ meeting to appeal the predetermined decision.
The ‘appeals guy’ refuses to speak to us as we made a complaint against him. He has now been promoted to head of CHC commissioning so we have no faith in getting any form of independant review.
We have written 11 times by recorded delivery letter/email to 6 different people at the CCG including the chief officer and chief nurse. On all occasions we have had no response from them and no date given to us for a local resolution meeting.
All of the original people involved in the MDT process except the ‘appeals guy’ have left the CCG under and i quote from them ‘circumstances that cannot be disclosed to me’.
In the end 2 weeks ago it seems i pressed the magic button by formally complaining saying the CCG were discriminating against father in law due to his mental health disability…suddenly we had a local resolution meeting on Friday although they are only prepared to discuss the DST document and nothing else. I have stated that this is not policy and we will be discussing all aspects of the process to date.
During Fridays meeting the CCG refused to discuss anything except the DST document and after 1 hour having highlighted 17 breaches of the national framework and pulling apart the doctors ‘robust’ reports, the new appeals guy stopped the meeting refusing to carry on.
He told us to complain to NHS England it had nothing more to do with them. The note taker from the CCG refused to put on record my complaint about acting in a discriminatory way due to mental health and age!
To add insult to injury we were then told it would take 28 days to get the meeting notes sent to us!
As you can imagine from the brief details here (the full account would take you some hours to read and i think would horrify you even more) the stress on father in law and us has been enormous,and it continues to this day.
Luckily we have read the national framework in detail and have been persistent enough to get to this stage, god help people on their own!
So the fight continues and the person at the centre of it all has not been given the right care after 1 yesr and 2 months.
Well said Elizabeth. All resonates!
Glynis, it is worth remembering that not only do you need to prepare and collect and present evidence on your relative’s needs, you must apply these to the wording of the domains and also demonstrate Nature, Intensity, Complexity and Unpredictability to establish an overall Health Need. Also remember the scores needed to achieve eligibility – which are in the National Framework and Decision Support Tool (DST) documentation. Assuming some understanding of the process and fair dealing on behalf of the assessors (!), it’s worth considering that In times of tight funding it’s unlikely that awards will be made with no Severe scores and/or no narrative linking the overall impact of the domains.
I agree Glynis, we had read everything we could, had all our answers prepared and argued every point. Despite high scores which on the face of it meant mum should qualify, we were still given and out and out no, and that the scores didn’t mean anything!! The whole scoring process just seemed a bit pointless!
Hi, could you tell me if there is any reason why I can’t record my face to face meeting with NHS Continuing Healthcare (CHC) panel regarding my deceased mother’s payments for care? I have asked if it is alright to record it and it seems they are not very happy about it and are coming back to me.
Regards
Gordon Stovell
We were refused all methods of ‘recording’ the Multidisciplinary Team (MDT) meeting including the threat if we took notes we would be asked to leave and the meeting would continue without us.
If no one including the claimant has nothing to hide why not have the meeting recorded? It would stop any ‘confusion’ on either side at a later date.
We have just had the local resolution meeting having waited 1 year 2 months for the CCG to agree to this. They again would not let us take notes but had a note taker. When i said i wanted my comments about discrimination minuted they stopped the meeting telling me now to go to NHS England.
Until a fully recognised legal meeting framework is established nothing will change. The bureaucrats know they can get away with virtually anything currently.
Apparently this is a person-centred process…The irony seems to be lost on our CCG!
I have posted on my MP’s Facebook page that Continuing Healthcare (CHC) assessment process needs looking at urgently and how unfair it is. I totally agree with Mark, that until a fully legal meeting framework, with a proper points system for each domain and a point criteria for eligibility is put into place, then nothing will change. Is there any way that we can get a petition set up on the government website calling for this. With enough signatures, we may be able to bring enough pressure on the government to get this done. Would welcome your thoughts.
Help please. Is the Decision Support Tool (DST) supposed to look at patient’s needs now? When they first presented at hospital or a combination of both? My mothers DST is glowing because she has made good progress while in hospital so they hospital are now saying that her needs are greatly reduced and have supplied evidence from the last two weeks, for example about how well she is eating, but the charts from her admission in Jan and Feb indicate she was eating as little as a 1/4 portion of a meal during a whole day. At that time the hospital recommended nursing care in a nursing home now they have changed their minds and have said she can go back to her own home. I’m so confused. What point in time is the DST supposed to cover? Thank you
Just had reply back from CCG about my request to see list of things CCG would not allow us to talk about at the local resolution meeting we had last week. This was because we raised a complaint 8 months ago (which still has not been responded to, now told end of April before we can expect a reply).
The meeting manager would not give me the list he said he would stop me straying onto unallowed topics as the meeting progressed.
Apparently the CCG think my request to see this list is unreasonable!
So they would not tell me verbally at meeting what we could not talk about (they only wanted to go thru Decision Support Tool (DST) document). Now they don’t want to give me that info in writing either.
You couldn’t make it up!
As I said before on this thread until there is a detailed legal framework with no wriggle room for these people nothing will change.
Everyone needs to keep up the fight no matter how long or hard the battle!
Remember we pay these people! Our relatives have contributed in full all their lives…it is not and never has been a free service..although if you spend enough time with CCG staff you would think they are doing you a favour!
Onto our MP to see if pressure from this angle helps.
Good luck with your MP Mark – I have found this petition regarding the malpractice of the Continuing Healthcare (CHC) assessment system. I urge every one to sign & share on Facebook account, if they have one. https://you.38degrees.org.uk/petitions/investigation-into-the-malpractices-of-nhs-continuing-care
If anyone can help me with the wording, I am more than happy to set up a similar petition on the government website, which will carry a lot more clout. Something radical needs to be done urgently. Good luck everyone with your continuing fight to achieve justice for your family 🙁
I am just in process of setting up a petition on Govt website. Unfortunately there is a restriction on the number of characters you can use in each section, but would welcome your input on the following potential wording.
To investigate the unfairness of the Continuing Health Care assessment process
Across the UK thousands of people are being denied their rightful entitlement to continuing health care funding. It urgently needs reviewing for those suffering multiple medical needs from symptoms of dementia & other serious illnesses.
The Decision Support Tool, in its current form, does not take into account the complexities, uniqueness and unpredictability of many serious illnesses. There are many examples of people being denied funding, yet who are seriously ill & require full time nursing care. The whole process requires complete investigation, with straightforward guidelines & criteria put into place.
Great idea Glynis. Thanks for sharing. I’d be happy to help you with the wording.
Hello,
My mum is currently in care after having a severe stroke. She was initially fast tracked by the hospital in August 2016 and granted Continuing Healthcare (CHC). Mum was re-assessed at the Multidisciplinary Team Meeting (MDT) in early January 2017 and we were told she didn’t meet the criteria for CHC funding but the report would go to the CCG and we would be informed in writing after their meeting, but it was made clear that their decision would be accepted. Today, 21st March 2017, my dad received a letter from CCG group stating mum is eligible for CHC but the report from MDT was included in the correspondence stating that they didn’t recommend it. I just want to set my mind at rest as I’m still uncertain. Does the CCG ever go against an MDT decision in this way? I would be most grateful for help here. Many thanks, Carol
It definitely states “is eligible for CHC funding” I’m just worried that they’ve missed out the not as there were lots of errors on the letters! It would be a big mistake for them to make I guess. Thank you,
Carol
That all sounds fine & you have it writing, so I would think that they would have to honour that. I am so thrilled for you. I would imagine that the letter states how the payments will be made & information on future reviews. If not, I am sure that they would be happy to advise on that, if you contacted them. Take care & well done xx
Thank you so much Richard.
This lecture should be watched by all assessors and, more importantly, their ‘managers’ who ‘review’ assessments.
A really brilliant lecture which will give knowledge, clarity and hope to everyone applying for Continuing Healthcare (CHC).
FB
Can somebody confirm whether or not it is correct for us to have been asked to leave the DST meeting once the 12 care domains had been reviewed, please? At this point the nurse assessor thanked the other professionals (OT, Physio, Nursing) and us for our contribution and said that she woud discuss the findings with the social worker and then let us know. After about 50 minutes she recalled us to the conference room and said that they had decided that my brother was no longer eligible for CHC funding. All of the suggestion throughout the DST assessment was that nothing had changed in any positive sense since the initial DST and in fact he had developed another medical problem. However, we were not allowed to be present when they discussed the interrelationship of the various care domains (complexity, unpredictability, intensity & nature) and so couldn’t input into this and when the formal report that came out to us it simply said that despite the issues that he has the care he needs isn’t over and beyond what the LA could reasonably be expected by provide. Could anybody confirm whether it was legal to exclude us or could we argue that it was a procedural error?
The government has now kindly published my petition calling for an investigation into the shortcomings of CHC assessment process. PLEASE sign & ask as many of your friends & family to sign as you possibly can. We need 10,000 signatures for a response from government & 100,000 to have it debated in parliament. If you have a facebook page PLEASE share on your facebook page & ask your family & friends to do the same. We need to reach that 100k figure. Thank you so much
https://petition.parliament.uk/petitions/191242
Hi Glynis i have signed the petition and got a few people to start to post it on Facebook.
Reading all the above comments makes your blood boil. But with no legal redress and a complaints system with no enforceable authority the CCG staff act like it’s the wild west…let’s get organised to stop this disgrace from continuing.
Glynis is there a Facebook page to support the Government petition? I have signed it and shared it on Twitter but obviously we have a long way to go to get to 10k signatures.
I am putting together some graphics highlighting the petition which once done am happy to share with everyone to use. Hopefully the graphics etc might grab the attention of the media or spark a bit of general interest.
Hi everyone i have been busy on Twitter today trying to publicise the petition https://petition.parliament.uk/petitions/191242 The more people who can fill their message boxes with sign the petition messages the better. I have just started to message national media with the same message and again anyone able to do the same would be helping a great deal…the more co-ordinated ‘noise’ the better! This time yesterday the petition had 23 signatures. Today it is at 155, mountains to climb but with a couple of individuals pushing it in 24 hours we are heading in the right direction!
Please can you advise. I have no POA for my Mum. TBH my mother has not been right mentally since the sixties & even when I tried to convince her to have it in the nineties she regarded it as a waste of money. First let me tell you there is no house, no savings, no assets. All she has is her pension & they take a massive chunk of that & I truly believe she should not be paying it. She was sectioned in 2009 & spent a year in a NHS psychogeriatric unit & then discharged to a residential home with dementia care.Of course she has got worse & worse & is now in final stages. My question is will & can social services tell me that I cannot fight any NHS continuing care case for her as I have no POA? I feel utterly helpless. Thank you
My Mother had vascular dementia and after suffering a bad fall the hospital gave her a borderline Decision Support Tool (DST) verdict for Continuing Healthcare (CHC) funding before her admittance to a nursing home, which I appealed. A month later the appeal gave a second borderline DST and I was told she would be assessed again in three months’ time (as I believe is the regulation). In the whole 18 months she was in the Home no one came to assess her (without which I had no chance at all to secure funding) despite both I, and the Nursing Home phoning the NHS regularly to ask them to come. The Nursing Home was adament she should be awarded CHC. At long last someone arrived and immediately fast-tracked her. A month later she died. I asked for a retrospective review which has just been completed after a wait of 33 months. Amazingly her health was judged to have improved beyond recognition so she was even further from eligiblity tham when she entered the Home. I feel because she had had two borderline assessments that they wouldn’t do another as they were afraid they would have no alternative but to provide funding. Any tips on how to handle my next appeal please?
This morning we received our letter following the local resolution meeting held 2 weeks ago. Having waited 1 year 2 months for the meeting all we got was a six line letter saying the original denial of funding at the Multidisciplinary Team (MDT) meeting was upheld.
No mention of the 17 breaches of the national framework detailed to them at the appeal meeting. Not mention of the incomplete and innacurate medical reports detailed to them at the appeal meeting. No mention of the conflicts of interest by having the head of appeals at the original MDT meeting, who refused us permission to take any notes.
The only good thing from the appeal meeting is the minutes they provided detail everything we brought up or gave them in written format.
As we said on the day and was noted in the minutes, the meeting was a complete sham from begining to end.
On every communication i do with them i point out they are discriminating against the patient due to his mental health condition..even this does not bother them. It is like Dodge City in the wild west!
Regarding the petition started by Glynis we seem to be stalling a little now in terms of new signatures. This morning we are at 786 signatures. One of the issues i think is trying to explain what Continuing Healthcare (CHC) funding is in a couple of emotive sentences that will resonate on social media.
If anyone can help coming up with this ‘phrase’/sentences i would be grateful. I am planning to hit twitter/Facebook again in the next couple of days to try and boost the numbers again.
Interestingly only one of the charities who ‘support’ elderly issues liked or shared the petition the others ignored it. This might be because they also don’t understand in any detail what CHC funding is all about…We know NHS staff don’t understand it!
So predictably the Resolution Meeting was another sham though we were allowed to tape it . Has anyone else gone to Independent Review Panel (IRP)? Why are they currently asking you first to detail hour-by-hour the care needs and complexitity etc. Surely we can’t be expected to know how long each care need lasts including the paperwork connected to it? Should we just have to supply Decision Support Tool (DST) and notes rather than have to complete timesheets? And how does that equate to health care-v-social care principle. Is this another ruse to put people off? Time soon to consider the last option, legal action because at least the judge would have the final say and adhere to Coughlan not the CCG or NHS and their national framework which isn’t even applied correctly anyway. Used to work in insurance, the customer complains by letter in which the insurer has to respond within a timescale, if not happy goes to Financial Ombudsman, why so many arbitrary hurdles with the NHS??
I have received this message from parliament to say that the petition re investigation of CHC process will be closed early on 3rd May . We were at nearly 1000 signatures – I just give up. But a BIG thank you to everyone who signed or helped.
“Dear Glynis Evans,
Because of the General Election, the closing date for your petition has changed. All petitions now have to close at 00:01am on 3 May. This is because Parliament will be dissolved and all parliamentary business – including petitions – must stop until after the election. This means the petitions site will be closed and people will not be able to start or sign petitions.
We’re sorry we weren’t able to give you more notice that this would happen.
Your petition will be available for people to read on the site even though it will be closed for signatures. Your petition can’t be reopened after the election. You are very welcome to start your petition again when the site reopens after the election, but you will need to collect new signatures. We can’t transfer signatures to your new petition.
The Government can’t respond to petitions during the election period. This means if your petition has over 10,000 signatures, it can’t receive a response from the current Government after 2 May. After the election, the new Government will have to decide whether it wants to respond to petitions from before the election……
The Petitions Team, UK Government and Parliament”
Sorry this may be a stupid question and I might have missed something but my understanding of the law is the local authority (LA) have limits to what they must provide as defined by Coughlan, and if the LA decide it’s not social care the law says its automatically health. So why does everyone focus on the CCGs who appear to operate outside the law and use a tool which isn’t compliant? Why not direct appeal /complaints to the LAs and make the LA do the work ??
As part of my back and forth with the CCG they sent me a letter today containing the following comment. Not sure firstly where you can get hold of these facts as a document to study, local CCG won’t/can’t supply them and secondly how the figures are worked out based on 50,000 population.
Any ideas gratefully received.
‘The CCG is not an outlier? in funding decsions and is funding at the national average rate per 50,000 population for England’
‘It is noticeable that the CCG only had one appeal upheld last year by NHS England. This provides some evidence that due process is being followed in applying the national framework in a consistent manner’.
Having highlighted in great detail 17 breeches of national framework in our case i allowed myself a smile at this comment.
I think we need to set up a petition on change.org or 38 degrees & have it so that it actually goes to the Minister for health. We also need everyone to email their MP’s about this.
2 quick questions
We have an issue . Our father has a Deprivation of Liberty Safeguard (DoLS) in place but also now has a health Power of Attorney (POA) aswell. I used it to ask for the medication list and the Office of the Public Guardian (OPG) have contacted us to say a complaint has been made. It has been made by the home but do you know about the relationship between having a DoLS and also a health power of attorney . Can someone with a DoLS have a health POA? The home seems to think not.
Also may i ask , if someone gets continued care in a certain borough, but then they move into a different borough( (perhaps where their care home is ). Does the continued care get transferred to the borough he lives in ? Just didn’t know how it works.
Thanks very much
Hi ,
Sorry just to add more to my second point. If someone gets Continuing Healthcare (CHC) approved in one borough because their name is on a property , but they sell that property and buy a house in another borough with their name on the property, does this affect CHC in any way?
Thanks again
I am finding Care To Be Different’s ‘How To Get NHS To Pay For Care – v2.2.1’ very helpful. I am though about to use the sample CCG letter therein . And am querying the ‘I have taken specialist advice ..’ para p99… as I haven’t taken specialist advice yet. I may omit this para for now …. although expert legal resources may be required later I realise…..
This whole saga has been a revelation to me….you don’t know about it until you’re up to next in the madness of it. I know there has been some media coverage but it’s been minimal do you think we should assert more pressure and try and raise awareness of the scale of this ridiculous mess ? And does anyone know of any cases which were taken to Judicial Review ??
Healthcare has been redefined as social care. I am beginning to wonder that even if your relative is in a coma it would still be classed as routine and therefore social needs. Even at the last meeting we asked the social services rep what the social needs were. There were none that a council could provide since even feeding needed to be encouraged and they were bedbound with little activity . The answer is they would get back to us on that one, they didn’t yet still classed the needs as social??? They will continue to deny Continuing Healthcare until challenged by a Court as they are not to be held to account by anyone else.
Can anyone share any press contacts who are interested in Continuing Healthcare (CHC) funding stories? I know of a guy at the Sunday Times who did a couple of pieces last year but thats about it. I have been struggling to get any interest from the media so far, but that might just be me and some of you may have had more success.
I have spoken to a number of solicitors about CHC funding and the consensus was for them there is not enough money in it and unlike say medical negligence proving who is right/wrong is difficult as the funding is not ‘protected’ by a defined law which could be used as the tool to get CCG’s to court.
Again others may have had more success than me on the solicitor front.
Still convinced the hidden gem is discrimination…What does anyone else think?
It seems obvious with the volume of stories on here and other social media that the system is totally abused by the bureaucrats and for us to get anywhere we have to do something collectively.
The million dollar question is what/how we do something collectively?
Hi Hope/ All
Thanks for replying . Just to clarify , our family member is in a care home which is funded by the CCG in the borough of which he part owns a flat with another family member. Are you saying that if this flat is sold , and another flat is bought in a different borough with his name partly on it , the CCG in the borough that originally awarded the funding, will still be responsible and it won’t fall on the new CCG causing a reassessment , before they accept funding again?
We just want to make sure there is no change in the funding, if a flat partly in his name is no longer in the original borough , but a new one.
Thank you so much for your help. Very much appreciated.
Sam
Hi Sam,
Continuing Healthcare (CHC) is not means tested therefore finance and assets are irrelevant to its receipt. In terms of an individual moving area after being awarded CHC, it is my understanding that the CCG responsible for determining eligibility remains responsible for funding their care. Funding continues to be subject to review as is usual.
Hope.
Hi. Everyone
What really gets me in this whole debacle Is the amount of taxpayer’s money that is being wasted in carrying out this ludicrous process implemented by CCG ‘s throughput the U K. I have been involved in a battle to secure CHC funding for my late mother for four years. The appeals process is both time consuming and costly and completely unnecessary . Why, oh why, do they not then just come clean and say that there is no money in the pot for CHC .
I have been involved with this process for 4 very long years and our case is now being investigated by the Ombudsmans office however I dread to think how much money has been completely wasted going through the appeals process . Local resolution meeting , local review meeting , IRP etc etc etc.
I attended IRP in October of last year . There were 8 people in attendance representing the CCG , LA , and IRP panel . This is ridiculous and totally unecessary , and yes they came to the same conclusion as everyone else before them ( surprise , surprise ) that my Mother did not qualify for funding !!! How much money must each meeting have cost the NHS ???? How much money did it cost to have 8 people present and over 1600 pages of care home notes , doctors notes , districts nurses notes replicated for each the panel members involved ?? Surely it would have been less expensive to have awarded my mother some funding in the first instance , for which she undoubtably qualified , instead of wasting money on this pathetic process. Isn’t it about time someone did something about this! After all, we as taxpayers , are all paying for it.
The CCGs have 2 strengths they rely on… 1.we are individuals each battling seperate cases and 2. Most of us will give up if they ignore us or draw it out long enough. What we need is co-ordination and pressure! We need to show how stupid the Decision Support Tool (DST) really is or how it’s being used in an abusive unlawful way. We know it doesn’t relate to Coughlan but that doesn’t seem to matter to them. We know they don’t even apply their own framework correctly and that does not matter . One strength we have is Health Care Needs should be the same across the whole country and illustrating that the DST is hit and miss could help to expose this for the public scandal it is. I would like to know what does the DST look like for someone who either gets Continuing Healthcare (CHC) – or who wins at appeal or Independent Review Panel or Ombudsman. The DST is a mandatory form so we all have one. Maybe if your relative is in a home or you’re part of a group you could get in contact with people who have got CHC and ask for the DST results – we don’t need any personal information just the scores. Anyone interested in pooling our information?
As many of you will know, the Continuing Healthcare Alliance published a report in November ’16 highlighting the ongoing dreadful situation in Continuing Healthcare (CHC). The Department of Health has since said it will reform the assessment tools, including the Decision Support Tool; NHS England has launched a ‘Strategic Improvement Programme’, whose stated aims include engaging the people in CCGs who conduct the assessments, to create positive changes to practice. NHS England also claims to be investing in more robust training for CHC assessors. Not before time, many would say. These could of course all be empty promises, and whether or not any of this will actually make a difference – or even happen – remains to be seen. You can read the report here: https://www.parkinsons.org.uk/continuing-healthcare/report
I am crying as I write this because I began crying when I was speaking to my father’s GP and now I can’t stop. The stress and strain is too much. We are not fighting for care home funding like many on this site, just for support to keep dad at home where since March last year we have provided full-time care simply because we have no choice. To withdraw care would lead to his death(this is not melodrama but the simple truth as my father depends upon us for his every need) and yet to move him to a care home would be no better. He views care homes as dumping grounds for the unloved and has held this view since the 1970s and since developing Alzheimer’s clings to it in the form of an irrational fear of being abandoned. A care home would kill him and he would die of despair. The GP was explaining after three weeks of phone calls between him, myself and the practice manager that to attend the MDT meeting was impossible because a locum would need to be paid to cover his surgery work and paying locums comes out of the pockets of himself and the other practice GPs and locums were expensive. I broke down. It has taken since March last year to get the CCG to finally run out of excuses for not assessing and it will be a waste of time. Even with the doctor there I am not hopeful (the CCG has acted unlawfully for over a year and raising the fact as high as board level has made no difference. The CCG knows I am powerless). Without the GP I know it is hopeless. I found myself sobbing down the phone that I would pay for the locum if only the GP would agree to attend. He didn’t.
Hi, I would appreciate some advice please, my Mum has been in Hospital now for 6 weeks and we have just had the Nursing assessment and Continuing Healthcare (CHC) checklist completed this week. The recommendation is that Mum will require Nursing – EMI care. I have sought lots of advice on how to approach the CHC process and most advice seems to indicate I should push for an on ward CHC assessment and the Multidisciplinary Team (MDT) should take place before Mum is discharged. Both CCG and Social Worker are continually advising this isn’t ‘normal procedure’ and we should agree for Mum to go into a place in the Community which is described as a ‘step down bed from the acute hospital’. Whilst this will be funded I am reluctant because I understand my chances of a successful CHC application will be diminished once Mum has been discharged. I sought advice from a firm of advisors who also stated this shouldn’t be considered a risk on the application and on ward assessments don’t have the same success rate as a community assessment ?. Any advice or benefit of anybody’s similar experiences will be greatly received. Regards, David
Good Evening, following completion of a Continuing Healthcare Checklist I’ve pursued CCG to advise dates for Multidisciplinary Team etc but have been recently advised the Checklist is ‘not valid’ because my relative is not ready for discharge? I’m not aware that this was a requirement and is not consistent with advice or my experience to date. I’ve read the guide and cannot see this as a condition of a ‘valid’ checklist? I will be checking with the Hospital on what may have changed that may prevent discharge because they have advise on previous occasions it was possible? Any advice on the link between discharge and ‘validity’ of Checklists much appreciated. Regards
Hi, does anybody know what the next steps would be if my Mum who is currently in Hospital fails with a Continuing Healthcare application, she has been diagnosed as requiring 24hr EMI care. I understand the responsibility will then pass from the NHS to Social care, I’m unclear on whether she will be able to stay in hospital until we appeal the decision or we will be ‘forced’ to find her a place in the community whilst an appeal is ongoing? any support / advice will be appreciated. Regards, David.
Our saga continues on so many levels it is difficult to know where to begin.
You might recall at our predetermined Multidisciplinary Team (MDT) meeting in 2015 the CCG sent along the head of appeals to sit in on the meeting. This was challenged by us but we were told the meeting was happening with or without us present.
We watched this person take notes (sat opposite us) for 3 hours. As part of our long drawn out complaint and appeal process the CCG eventually agreed to an appeal meeting with this same person deciding if the appeal would be successful or not.
We cried fowl and said no way was this happening as the conflict of interest was so obvious it could not be allowed to happen.
After 15 months they agreed to a resolution meeting without this person running it. As part of the meeting we were told it is common for the head of appeals to attend MDT meetings and we should not be doubting this professional’s integrity. Obviously we did not believe this and through a freedom of information request we found this person had only attended 1 MDT meeting in 12 months…ours!
Based on this we requested this person’s notes from the MDT meeting. This was refused and we then requested the notes via FOI request. The response is that this person uniquely attending 1 MDT meeting as head of appeals in a year took no notes! Remember we watched these notes being taken!
Our formal complaint launched 12 months ago has been delayed 4 times for a variety of ridiculous reasons and the 5th extended deadline has again been missed. No communication from patient services (LOL) It is left to us to beg for updates.
All the CCG board have been copied on all written communication but all have refused to answer back to us.
The fight continues!!!
Hi, I’ve just been advised we have been successful in our application for Continuing Healthcare (CHC). We are considering ourselves very fortunate to gain acceptance at the first attempt and very relieved to have the issue resolved. I cannot thank Angela Sherman and the contributors to this site for the information and support available enough. We now have the task to find the best Care Home possible. One point I’m not completely clear on is how we determine the Rate we will receive and how they are applied / accepted by the home ? I’ve been advised recently by a Social Worker ‘oh they won’t accept CHC rates’?, any advice greatly appreciated. Regards, David
Question for Chris G as he has been in this situation. Local Authority (LA) debt now in hands of bully boys debt collectors. LA now not minded to wait for arbitration process 3 years on, which is now proceeding to Independent Review Panel (IRP). Local Review have agreed just 6 weeks despite the needs have been unchanged for the entire review period. LA say WE have to prove we don’t owe fees and demand copy of outcome report at local review which we have refused. Bully boys have threatened a preaction disclosure hearing. The report states false info, a name of another patient (which calls into question its validity if it is confusing our relative with another) and lacks any reference to any social need whatsoever. LA have now waded in wanting to look into the assessments etc themselves. Are we really at a position where we have to prove incorrect facts and a primary healthcare to the CCG and the LA separately causing no end of correspondence, not to mention the LAs complete lack of understanding of the CHC process? (CCG not being much better though.) Help required is an understatement here!! Must say though wouldn’t be this far without this website.
Thanks to all of you for posting your comments here – they’re really useful for everyone gong through this horrible Continuing Healthcare funding battle. With the results of the General Election today, it’s unclear at the moment what moves the next government might make in (possibly) changing the rules about care funding, but we’ll publish updates and info as soon as things become clearer. Governments tend to focus on social care, though, rather than healthcare – quite possibly because they don’t actually understand the difference between social care and health care! But with the gradual dismantling of the NHS, anything could happen. We’ll keep ahead of that. Please do keep your own comments coming – we really appreciate all your contributions to this page and to our blog as a whole. It’s invaluable. (We just ask that you don’t copy and paste your own correspondence into this comments section – because it’s your own insights, tips and experience that an really help others, rather than actual correspondence to and from the health and social care authorities. Thanks for your understanding.) Stay strong, hang in there and keep going if you can. These two articles may also help: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/ and this one http://caretobedifferent.co.uk/nhs-continuing-healthcare-keep-going/
Has anyone heard of this before?
Currently CCG joint funding care with council for a year now due the the mess they made of the Continuing Healthcare (CHC) Checklist process etc. Anyway today after our formal complaint was finally rejected as without merit an email arrived. The CCG want to do a routine clinical review of our relatives needs in the care home. They state as power of attorney we don’t need to be there as it is not the Multidisciplinary Team (MDT) meeting, however they say the review will be used at the MDT meeting to, and i quote without any irony…’It will be used to inform the CHC eligibility decision as part of the Decision Support Tool in conjunction with the professionals other assessments’.
Just coincidence it is now happening after they believe they have got off scot free by rejecting our complaint?
Never heard of this before and can’t say i have found it in the National Framework.
Maybe i am just a skeptic but sounds like a stitch up attempt to me.
Just a quick update as we await ( not with baited breath ) the result of our most recent Multidisciplinary Team (MDT) meeting. Having asked the local authority (LA) social worker (SW) (2 present!) what was happening post meeting and what recommendation the MDT had made to CCG her reply came thus:
“You know that the Parkinson’s Nurse had to leave before the end of the MDT. The chair indicated that she would contact the nurse. I did not understand the chair to say that she was to reconvene the MDT. It has not reconvened. The request for disclosure of my assessment is from the chair, who wishes to see my assessment in full. My understanding is that she wishes to see the assessment before a recommendation is made.”
Given the Parkinson’s nurse had to leave – she was “only booked till 4 pm” – and from the above it is clear that in the 10 minutes between us leaving the meeting and bumping into LA + CCG folk at the car par ticket machine any recommendation is being made by the nurse assessor not the MDT.
(SW asking for permission to hand over written copy of her care assessment)
Interesting Richard that social services on your side, proves that CCG are ” law and order ” as far as Continuing Healthcare (CHC) goes and there is nothing to change that than to go to Court. Anyway when did healthcare become only intense and complex etc. Say if I was to have a standard knee op and someone one more ” complex” would only the latter be free? Crazy isn’t it. We are still waiting for the Local Authority (LA) rep at our meeting to tell us exactly what they are funding, i.e. what are the social needs. 6 months on and still waiting. Why? because our relative’s needs were as such there was nothing social to provide. Last social assessment fraudulent as on no headed paper, not dated, not signed by the relative or family and contained such false information, the LA should be sued for understating needs that could have had a detrimental affect on the care received if it was to be considered a care plan. Care needed way above Coughlan. Though the CCG state in their response letters ” in accordance with Coughlan ” we have no doubt they probably have never read the case and this is a copy and paste insert to all their correspondence. A lot of their Decision Support Tool (DST) was unevidenced because there was no evidence to support what they said, on the contrary, we rewrote the DST for the panel and evidenced everything, they took no notice of any of it . We shall see what the Independent Review Panel (IRP) says though the DST has been altered twice already, signed off by 7 “professionals” at 3 different stages . Why would the IRP change the decision? what to agree 7 of them got it wrong?? I don’t think so. They are taking us all as idiots and only a judge will change that mindset.
After 18 months being denied assessment for Continuing Healthcare (CHC) Dad ended up in hospital and after a week of indifferent “care” has deteriorated so much we do not think he will recover. He is now back home where we provide 24 hr care. I did not believe anything much could surprise or shock me about CHC after all these months of unlawful delay obstruction and lies, not to mention what I have read on this site, but the NHS has surpassed itself in its cruelty over the last six days. ‘Care’ from nursing staff has been careless and indifferent. Many so-called professionals lied to us outright about so many things, including Fast Track and access to medical records; a nurse, a social worker and a doctor all asked about my father’s savings, one wanted an exact figure and was ready to write it down and a consultant, unforgivably, smiled at dad and gently asked if he wanted to go home and when dad whispered yes, the doctor said in that case they would have a little chat about his house and how much he had in savings and he, the doctor, would help to get him back home. My father with severe Alzheimer’s and now physically very ill could not have been more vulnerable. No less than 4 doctors refused point blank to Fast Track despite his frightening deterioration, insisting he had to be 2-3 days from death or it did not apply, and one, terrifyingly, threatened to stop us taking dad home when I said we intended to discharge him. This doctor was arrogant and did not like the fact that I disagreed with what he told me about Fast Track and CHC, especially as he had boasted of being legally as well as medically qualified. I quoted the precise language used in the National Framework and he informed me he did not have to listen to me if I spoke to him like that and added he could prevent me taking dad home. He was backed by nursing staff who threatened to call the police and have us arrested. Finally, two senior nurses insisted we were not allowed copies of his records in any circumstances regardless of a POA unless we had a lawyer and when finally I shouted at them in frustration that they didn’t know what they were talking about, exhausted after five nights without sleep sitting with my father each night because I did not feel he was safe if left, they called their security staff and told me I would be escorted from the building and not allowed to come back.
The NHS acts with impunity to bully patients and their families and acts regardless of the law and yet I feel entirely helpless. I do not believe dad will survive long enough for me to attend the Decision Support Tool (DST) meeting in July and for the CCG no doubt this will count as a ‘success’ – 18 months of care funding saved. However, despite what we hear from politicians and the media this is about so much more than money, it is callous disregard for the best interests of sick elderly people, most of whom cannot stand up for themselves and whose savings, if they have any, are regarded as fair plunder.
The DST meeting next month for which we have had to fight for 18 months now looks entirely pointless – all we wanted was support to keep dad at home – and that support is now unlikely to be needed.
I am at my wits end. Dad was discharged from hospital last Wednesday night and on Thursday morning his GP said she would “fast track” him. I didn’t ask precisely what she meant by this – I had been in hospital with dad for a week and was barely functioning from lack of sleep. I just assumed that at last something would happen. It is now Monday. Worried to have received no contact from the CCG and beginning to realise that the Doctor may not have been talking about CHC at all, just the immediate implementation of a 4 care visits per day plus a 24-hour phone number for district nurses so that we can request specific end-of-life medications/injections. This leaves us providing the other 23 and a half hours of care. Who would call the nurses for dad in the middle of the night if we were not here?
I emailed the doctor and ask her to clarify what she meant and got a message saying she is not in till Wednesday but they will ensure she gets the message then. I have contacted the social worker who was meant to be attending a DST meeting next month to ask who would put in a care package for an NHS CHC patient – she too is unavailable and I have not heard from the person my email was passed on to.
Dad cannot really be left and we are providing the 24 hour care he needs at the expense of our own health helped by a private carer we pay for ourselves. The lack of sleep(we have to alternate who stays up all night between two of us so only sleep alternate nights) is really getting to us.
There is no sense of urgency from anyone. It is now 3pm and in another hour it will be too late for anyone to do anything as the NHS and social services seem to start winding things up around 4pm.
I feel, as ever, entirely powerless to make anything happen. Even now Dad doesn’t seem to be anyone’s priority.
We been trying to get Continuing Healthcare (CHC) for 4 years 6 months then my father-in-law fell very poorly in hospital with chest infections, urine infections, catheter in for at least 2 years. Many times rushed into hospital with breathing problems fasted tracked bye his doctor to get re accessed for CHC I rung every week was told it will be within in 4 weeks this was June 2016. Then on December 19th 2016 he passed away. I rang every week from June to December they said they can still access his, even if he passed away. I lost all faith in the CHC System. It has been so stressful the assessors use a tick box system my father-in-law was so on oxygen 24hrs a day I feel we were let down as a family I have no faith at all in the system it seems if you have saved all your life that you have to pay. We have taken advice and have let the professionals take it to the insurance Ombudsman which will be final. We tried again in June again in June this year and have been turned down again. It seems so unfair he was a very poorly man .
Hi – I’ve been fighting for a retrospective review for over 3 years (unfortunately my mother in law died before a review could be completed) I have just had the decision back from Multidisciplinary Team (MDT) saying she did not qualify. I have completed a Notice of Dispute but my question is why are we not allowed to see the records used when carrying out the review – its like trying to appeal with both hands tied behind your back. They claim I cannot see any records as they are covered by the Data Protection Act. I can maybe understand if there is an issue with outside agencies such as Social Services or care home records but not services covered under NHS – Has anyone else encountered this problem ?
So what happens if your relatives Continuing Healthcare report marked confidential is then passed on to a debt collector working for the LA (outstanding care home fees) and is using the non-eligible ruling to try and sue you. The report is false and we have substantial evidence to refute its content and the decision and are going to Independent Review Panel. It is a serious matter when the CCG think they have a right to pass on a report to whoever requests it. Will the ICO and CCG take such a breach of DATA protection and confidentiality seriously when that breach has brought on harassment letters and phone calls from debt collectors? We will see.
Hi All
Hope everybody is doing ok with their loved ones.
It’s the Continuing Healthcare (CHC) assesment for our Dad soon, but I wanted to ask you all about a new change that is seemingly in place.
I had a few questions if anyone could offer some advice?
How does funding for a 1:1 work exactly? What is the criteria? Is it challenging behaviour or something else, eg upredictable behaviour or safety?
My Father has 24 hour 1-1 due to being a falls risk and due to his bleed on the brain, suffers from confusion and short term memory loss leading to challenging behaviour at times with not understanding where he is etc.
The assessor has stated that they want a behavioral chart every two weeks. These two week reports are apparently a new feature. Can anyone shed any light?
But the Assessor said they could limit the hours he is cared for. Does anyone know what they base this decision on? Do they go on the 2 week behavioural charts and take an average?
Thanks for reading and any help….Really stressed.
Hello, I’m hoping someone who has been through something similar can give their opinion/experience. I apologise in advance if my terminology is incorrect or if this should have been posted somewhere else.
My wife’s mother is currently NHS Continuing Healthcare (CHC) funded and is in an assisted living flat. Sadly, her condition is deteriorating to the point where the assisted living place can no longer meet her needs. We all agree that it would be better for her mother to move to a care home with nursing closer to us. However, this will require moving councils to a different area of England. Does anyone have any experience of this? We have been told that once she moves, her former council (or CCG or whoever pays CHC) will pay the new local authority but that they will only pay the new “local authority rate” of some absurdly low amount.
Having read loads on the Care to be Different website, this seems wrong. I’ve looked everywhere for examples of moving councils and CHC but haven’t found anything.
Hi All
Had CCG come this week to review my dad’s Decision Support Tool (DST) and go through all the criteria. But it was the 1-1 care that they are suggesting removing. In this situation , my father receives 24 hour care which is funded 20 hours by the Borough and 4 hours by the nursing Home.
He is a falls risk and has severe short term memory impairments . A 1-1 carer stays with him at night and looking at the sleeping charts, he will be restless some nights for different hours. Sometimes convinvced he needs to go and ask 1-1 to help pack up clothes , or some nights he will sleep for majority. Some nights only 2 hours.
So the 1-1 Assesor says , I’ve noticed from looking at charts over last few months, he sleeps at least 2 hours. She stated there was a pattern although when i looked I found different hours to when he falls asleep. She suggested removing the 1-1 for 2 hours a night and having a bed sensor ( which he already has), a mat on the floor and checks from the home every half an hour. The home can be understaffed at night, he was assessed by physio that he can get himself out of bed if necessary , there is no determination on the hours he’d fall asleep each night and it wouldn’t be in his best interested to take away the 1-1 care.
What should i be focusing on in this scenario or is it that there is no grounds for them to remove 1-1 for 2 random hours each night when there is no guarantee he could wake up any time and be confused / try to get out of bed. He is not near the nurses reception and wouldn’t know to press the buzzer in his room. If he fell no one would get there in time.
1) Can anyone suggest anything in this case?
One other concern , was they mentioned how it’s not good for my dad (or anyone) to get only 2 hours sleep. This of course is true but they were suggesting the GP looks into a sedative. The issue with this is my father is on various medication for depression , epiliespy ..lots..They can’t just add medication which can have an adverse affect to his other conditions.
2) So this can’t be considered to justify taking away 1-1 can it?
3) As I said the home pays for 4 hours, but, if there is a shortfall as CCG are refusing to pay the 2 hours, is the nursing home oblidged to make up the hours or is that irrelevant?
I’m in my 20’s so this is all tough but thanks!
It is quite clear to me that CCGs and Social Services are in collusion and jointly act in a manner to deprive those patients with income and assets of health care funding even when they are clearly eligible. This is done by not conducting the appropriate Checklists, misinforming or not informing patients and relatives and down grading health care needs. More over the assessment processes are often illegal and more often than not ignore Coughlan, or just say have considered Coughlan but still ignored the implications of it. This is a national scandal and its hard to believe that the national press has not taken the issue up. Maybe Private Eye should take up the case??
Hi Richard – She is a high calibre journalist who specialises in the area of Health & Social care. She covered the subject a few years ago, before it got as bad as it is nowadays. She is shocked at what is happening & is working closely & in depth with the 2 people concerned. I am sure it can only do good. Have a peaceful & restful Christmas
Hi everyone i have been quiet on here for some time as i have been fighting the CCG a second time through their kangaroo court (sorry Multidisciplinary Team) process.
2nd time round was even worse/more farcical than the 1st…i didn’t think that was possible!
Anyway i just wanted to say i agree with Richard have a few days off over Xmas (the highly paid bureaucrats are already enjoying the festive season!)
Have a rest and we can all start the good fight in the new year.
Just in case you don’t know (Sorry if this is old news) Channel 4 Dispatches are doing a programme on NHS Continuing Healthcare funding in the new year. 2 people i know of are being featured so fingers crossed it helps bring the scandal to the attention of the media and public and MP’s.
Merry Christmas to everyone on here…Good Karma is coming!!!!
Would appreciate some advice regarding NHS Continuing Healthcare (CHC) assessment held early in November for my 87 year old Uncle, who has been in a Nursing home since November 2016. Due to his extremely challenging behaviour and high risk of falls; (suffered two falls this year, one resulted in him being admitted to hospital) since August staff at the care home are allowing him to sleep in a recliner chair in the lounge every night as he will not stay in his bed.
At the CHC assessment, all domains were agreed by the Multidisciplinary Team (MDT) and scores were 2 Severes, 3 Highs, 4 Moderate, 2 Low and 1 No need. At the end of the meeting the Nurse Assessor stated that she couldn’t give a recommendation as there wasn’t enough evidence for the Behaviour domain. She said she would ask care home staff to keep an ABC chart for one week and would send me a copy of the completed Decision Support Tool (DST) to add any relevant comments within two weeks. Still waiting for copy of DST and eligibility decision. Have written to CCG Clinical Lead Nurse expressing my concerns about the assessment process, also requested copy of draft DST and copy of a Checklist screening document that was carried out for my Uncle in January 2017 which I knew nothing about! I complained to CCG complaints team as my letter and requests to CCG were ignored. Have now received a reply from CCG Clinical Lead but still waiting for DST paperwork and most importantly eligibility decision!
I am very concerned about my Uncle’s sleeping arrangements as I don’t believe it is good for his health and well being but the situation seems to be ‘played down’ by CCG and other relevant agencies!
You would think 2 severes is enough, unfortunately not in today’s climate as it seems CCGs are forever moving the goalposts to decline Continuing Healthcare (CHC) .Cynical but bet they will wait to find a weeks evidence of less challenging behaviour to decline eligibility. They should be looking at a lot longer period than that to assess properly.Also disturbing to note about the sleeping in a chair surely not acceptable which suggests current care plans not working. CHC is supposed to be more than about funding but to ensure the right care is in place to meet needs. Read the national framework thoroughly and make sure every guideline is followed and complain, appeal all the way if you have to. After four years feel as if I could do an assignment on CHC with the amount of material I have read on subject but without I doubt I know my relative did have a primary health need. When you are confident enough don’t let anyone get in your way of the right decision. There is plenty to read on this website and scores of feedback on every subject to keep you up for hours, but don’t get obsessive . Take Chris G’s advice on making a diary to record behaviours and needs probably not documented properly by carers. Make sure you get a copy of that Decision Support Tool and fight any opportunity to deny funding.
Just one further note to Jenny’s comment that nonsensical forms or not , they all add to intensity as carers have to spend time to complete them.We have countless care plans , assessments etc for this and that but are using them to show how intensive the care is for our relative.For instance on the drugs domain, all prescribed medications have to be given by a nurse, checked, ordered and exact times given etc recorded, this should all be included on daily records of care given timewise.By the way has the thread got the record number of comments now 237?? There is a lot of support here to continue the fight !!!
I totally agree what you are saying about the forms Jenny. The nurse has filled in our relatives forms saying all skin areas are intact, no pressure ulcers etc. Yet we have photographic evidence to the contrary. They systematically filled in forms saying she was being weighed, yet no figures were available. We found that they were not weighing her as it is too much of a risk to move her. We had to insist on upper arm circumference measurements & this has proved that she is at great risk of malnutrition. We have had to insist on forticreme supplements (which have to be overseen by a nurse) & special feeding techniques due to Dysphagia. We live 250 miles away, so we have to rely on carers & nurses to carry out their daily regime properly, but they just seem to fill out the forms as a matter of course – even if the information is incorrect…..
Yet another stumbling block I didn’t anticipate….visited the nursing home to ask to see the ABC charts and they refused my request! I’ve emailed the manager to ask why I’ve been refused access to my relative’s notes as she wasn’t available to speak with during my visit.
Is there any legislation on this issue or is it up to each individual nursing home to have their own policy in place? I’ve tried searching the Internet for info but the results are inconsistent.
I haven’t seen or signed a contract with the home as although my relative funds himself his placement was organised through Social Services at the Local Authority.
Still waiting for an eligibility decision on his NHS Continuing Healthcare funding, despite a letter from the CCG stating that the assessment was ready to be forwarded to me for my comments to be added, on 12th December 2017.
Thanks Jenny. Exactly my concerns too re shared equipment (recliner chair). Definitely not hygienic and no I’m sure the clients would not be expected to share the same bed!
I had an email from the manager at the nursing home inviting me to make an appointment to meet with the nurse assigned to my relative to look through his care plan! Strange that the manager (via the Nurse) refused my verbal request last week!
Thanks to everyone on this forum who has shared their experiences and those offering advice and support. Its such a comfort to know you’re not alone in this ‘fight!’