Flawed: NHS Continuing Healthcare Independent Review Panels
Further insights into lack of impartiality: flawed NHS Continuing Healthcare Independent Review Panels
We were recently contacted by Peter, who previously worked as Chair of an NHS Continuing Healthcare appeal panel.
(We’ve changed his name here.)
Peter told us about a new practice by his own CCG that raises even more concerns about the fairness of NHS Continuing Healthcare appeals.
He recently had to go through the NHS Continuing Healthcare funding assessment process personally on behalf of a relative. His relative was fully funded for a long time through Continuing Healthcare, without any problem, but at the last assessment the assessor said that his relative no longer qualified.
Peter advised the CCG that he intended to appeal, and requested an NHS Continuing Healthcare Independent Review Panel (IRP) hearing.
He then received a telephone call stating that the appeal would be held locally – and he was surprised when the original assessor attended and stated that she would be handling the appeal herself. It was hardly independent. Peter wondered if the CCG hoped this would stop the family proceeding further.
The assessor stated that she had reviewed the situation and had not altered her opinion about removing funding from Peter’s relative. She also advised that it was not worth taking things any further.
Peter wrote to the Chair of the CCG expressing his concern at this ‘IRP’ not being independent. Had he not known the proper appeal procedure, it’s possible that he and the family would have had to simply accept the decision.
He received an unhelpful response, but the family was subsequently invited to a new review. This was held at the CCG’s offices and was dealt with by the manager of the original assessor. The manager discussed the case and confirmed the original decision would stand, i.e. funding would be removed.
Again, Peter suspected the CCG hoped this would stop them going any further.
However, Peter informed the manager that the family was unhappy and would continue with the appeal. His relative needed full 24-hour care at home, and now her health had deteriorated further.
An appeal of the funding decision was arranged, but this was postponed several times. The reason given was that “there was not a Chair available”.
The family wanted answers to their questions about the lack of independence in all this. They were informed that the CCG had altered its procedures and, from now on, appeals would be dealt with by an in-house member of staff – as had happened with Peter’s relative.
Unfortunately, Peter’s relative died, and he decided not to take the appeal any further. However, it left him wondering how many other families have just accepted this supposed ‘new process’ without question.
It’s not unusual for a senior member of staff to initially review the funding situation – but it’s deeply concerning that it involved the same person who carried out the actual assessment because there was a complete lack of impartiality.
On account of his background, Peter is aware that CCGs do not like appeals, as these are both costly and take up much time. It would however be interesting to know how many families are coming up against the same problem when requesting an IRP and how widespread this ‘change in procedure’ might be.
Have you been in a similar situation? Did you actually get to an NHS Continuing Healthcare Independent Review Panels outside your local area – and was the Chair independent?
We’re interested to hear whether other families have also experienced such flawed NHS Continuing Healthcare Independent Review Panels. (Please avoid mentioning any specific names of CCGs or local areas.)
Read more on NHS Continuing Healthcare Independent Review Panels
Has happened to me – This is in direct contravention of your human rights for a start. The CCGs are repeatedly going ‘rogue’ in attempt to put you off pursuing legally if needs be – It’s a massive scam Govt NHS England The CCGs are ALL complicit
Blowing the whistle on state-sponsored organised criminals can be hazardous.
My experiences include.
1. Being falsely accused by so-called “safeguarding adults team” after making a complaint about Continuing Healthcare (CHC) assessors.
2. Threatening letter from NHS solicitor when publishing identities of those flouting the law.
That is disgraceful. We are just about to go to an IRP Appeal & have a feeling that it will be exactly the same. We don’t hold out any hope with IRP panel. From what you read they may as well not have that stage of the appeals process. Seems a waste of time & money. Should perhaps just go straight to NHS ENgland stage & then Ombudsman.
Continuing Healthcare (CHC) history: Concerns relative in hospital summer 2016. In August 2016 I requested CHC – the relative was living alone and disabled. The Mental Health social worker said he was not eligible. He was discharged Oct 2016. I had made my self familiar with the National Framework (NF) for CHC and asked to see a Decision Support Tool (DST) from the hospital. Blank faces all round. A Checklist was quickly sent off by Soc Serv to the CCG. Nothing happened and I then chase up the CCG who denied the existence of said Checklist. I then got the Soc Services to send of another Checklist. This was followed up very slowly and after 14 months Joint funding was awarded. I then asked Soc Services why hey had not followed up the original Checklist which the CCG denied the existence of and asked if they had any correspondence citing the original Checklist. This they provide which proved the failings of the CCG.
We heard no more – the joint funding which was not enough for his care and which I made up – and the Dec 2016 a review we set up (4 years later than the NF specifies) and a rationale was produced (Dec 2016) which states 24 intensive care. To date (Oct 2017) the funding is not in place and I am funding the shortfall. The panel is now setting about employing a private contractor to assess the needs. I have asked the CCG if the the needs in the Rationale are wrong and should they not keep the patient fully informed of what they are doing and why? There is something very suspicious in this service (CHC) and unlike other NHS services in our opinion. I have tried to identify the panel and asked to be present but am getting nowhere. BE VERY,VERY CAREFUL
Paul is correct. One is entitled to an Independent hearing regarding most administrative decisions. This is writen within the actual CHC standing rules regulations (law) because it is both UK and EU law……. It is a human right.
We have requested IRP. But it seems from above this is a waste of time. We are now looking into legal action as running out of time for this option and we will go alone as we seem to know more about Continuing Healthcare (CHC) than anyone we have met in the process or at least anyone willing to be honest through this process. I work for the NHS on a ward and please don’t be put off that the attitudes in CHC are anything similar on the wards, they are not. Such good honest work is being done by staff to get people home and safely discharged.
Best thing is to exhaust the local dispute process as quickly as possible and get to NHS England. Local CCG’s are a waste of money. I am an angry nurse disgusted with some so called professionals who should be struck off for being in breach of their code of practice.
We are going through a similar process at the moment. We were given Continuing Healthcare (CHC) 18 months after our initial application and following an appeal process that took 5 months and we have now been funded for 2 years. After an annual review recently we have been told that funding is to be withdrawn because my husband `no longer qualifies`.The assessor told me during the assessment (the nurse from the nursing home had to leave the meeting for a phone call) that she didn`t think we would qualify, so she had decided very early to withdraw funding.
My husband has a progressive, degenerative, terminal illness that means he has to be hoisted for transfers, fed with pureed food and thickened liquids (to avoid choking episodes), is turned in bed, has eye problems, poor cognition, poor communication, is doubly incontinent and has medication for diabetes, vitamin B12 deficiency, thick saliva, creams for skin problems etc, etc.
I have sent a letter to the CHC team informing them formally of my intention to appeal again, but what a waste of time and energy. I have contacted all the relevant medical staff (Consultant, GP, specialist nurse, Speech & Language Therapy (SALT) team etc) for letters of support as `evidence`. They have all expressed support but I am certain their time could be better spent. It all takes such a long time to resolve and I really want to devote my time to my husband while I can, however I will not give up.
I went to appeal and was rejected and was then told if I appealed further to NHS England it could take at least a year and there might be a `Review of the facts on paper first`before consideration of a hearing date in my area. Before this I was trying for seven months to get an updated assessment of my Mum`s failing health in the care home, without success, and now they say that aspect will be `Retrospectively looked at` based on care home notes as my Mum passed on!
My Story is slightly different, My Mother in Law went into a home in July 2015, that home was in a different local authority than her home address, and at that time we thought that she would qualify for Continuing Healthcare (CHC) funding, but on the first assessment she passed the first part of it and then went to the Decision Support Tool (DST) stage, and that was the end of that attempt. At that stage she did not have a social worker attached to her, which we later understood that she should have had.
In January 2016 we started the process again (her condition had got considerably worse) and were advised that she was ‘non priority’ to have the Checklist completed (but how they could say that without her being visited I can’t understand). As time progressed and very many attempts she was eventually assessed in September 2016 for the Checklist, which she had the required number of ‘points’ to go to the next stage, but unfortunately the next stage never happened, through a complete lack of cooperation from the authority of CCG, and she passed away in November 2016.
I contacted the CCG and was given many excuses, but nothing was done.
I eventually took the case to NHS England CHC in my region, and initially they seemed to be on our side, but then advised me that they couldn’t pursue the case any further as our local CCG said that my Mother in Law had never been assessed – she had, I was there!!.
I have asked for a retrospective review of the case from our local CCG, but that does not seem to be moving forward.
I continue to attempt to put pressure on the CCG, but just get fobbed of with excuses.
I have also made a complaint to the Parliamentary and Health Ombudsman – but that was only submitted recently, and to-date no correspondence has been received from them.
The CCG just seem to think that eventually I will get fed up and give in – I won’t!!
Just wonder if anyone else has had a similar experience?
At the point of my daughter’s transition from Paediatric to Adult services, and having been told that she had been assessed as being eligible for Continuing Healthcare (CHC) (to nobody’s surprise given the complexities of her conditions), we were informed at 5.30PM on New Year’s Eve that “someone had made a mistake” and that my daughter was no longer eligible. They then claimed that crucial paperwork had been lost. We used Legal Aid to challenge them and it was at that point that the CCG and Health Authorities suddenly became helpful and reinstated her CHC eligibility. Though she had been allocated a decent budget, many health and social needs were not met and it became clear that the health authority had no intention of meeting those needs since they were creaming off several tens of thousands of pounds off her package because it was ‘underspent’ – Roll forward several years and up until last year, we were lulled into a false sense of security – it was – to us and health professionals alike – inconceivable that the CCG would seek to use carers instead of registered nurses. In 2015 my daughter’s Care manager finally said that she could have a Personal Health Budget. We were given an Independent Advocate who helped enormously – perhaps too much, for she was suddenly sacked. The Care Manager then evaded submitting that document to Panel until at the end of 2016, he returned with an ‘assistant’ who was clearly there to cut costs. They stated that the previous assessment was ‘irrelevant’ despite it being incredibly detailed and current. In the meantime, they illegally stopped payment for my daughter’s social activities until the assessment was completed. In June, I was told that the assessment was submitted – this was without the ratification of the Multidisciplinary Team (MDT). I was assured that my daughter was still eligible for NHS funding and would retain her nurses. At the same time, the health authority here ceased to exist and I was told that my daughter’s package would now be handled by a different body. Though the staff were the same, we were allocated a different Care Manager who promptly informed me that the last assessment had not been submitted. There was no documentation to be found but somehow they knew that £20,000 of my daughter’s former budget had been slashed. The Care Manager then asked to come to my house to meet me and my daughter – “just a meet and greet to see how things are done and to get to know you” – the day after she met us (seeing my daughter for all of two minutes), she sent me a newly completed assessment from which it was clear that she had used the previous day’s very casual conversation as “evidence’ to downgrade my daughter’s domain scores. It is illegal to conduct an assessment without informing the client first. She pressured me to sign it, but I made huge amendments and pointed out that she had not only made significant errors but had misquoted my daughter’s nurse. All the “mistakes” the care manager had made were with a view to downgrading my daughter’s domain scores. The other half of her MDT panel this time was an experienced registered nurse who also worked as a private care manager. Where she had scored higher than the assessor, the assessor refused to document the higher score. The assessor also engaged several professionals such as my daughter’ respiratory consultant and seizure specialist in seemingly casual conversation and used their generic, offhand, unguarded replies as “evidence” that my daughter had significantly reduced needs. I wrote a civil email to the assessor’s superior complaining of the non-compliance and received a rude and threatening email in return. I took legal advice and outlined the unlawfulness of the whole procedure to this superior and asked her to forward this to the CCG – but she refused to reply to me. I then wrote to the Chief Executive of the CCG and its Board, informing them of the unlawful approach of the assessor and received no reply whatsoever. I then sought legal advice and informed the other professionals that their words had been used as “evidence’ to place my daughter’s CHC status in jeopardy – they were outraged. Despite the CCG having been alerted to the unlawful and non-compliant approach of their assessor and the many errors that she had made in describing my daughter’s need, they upheld all of what she had written and refused to raise her domain scores to match the higher scorings that the registered nurse from the MDT had given her. My daughter was accorded CHC status and retained her nursing staff for the next twelve months (thanks to the legal advisor and the fact that her ensuing hospital admission negated all the assessor’s so-called ‘evidence’ but I have no doubts that they are seeking to chip away at her domain scores until they can deny her status. On that basis, I am seeking to legally challenge them still. The immorality and criminality of these people is breathtaking. It is my belief that the health authorities, the CCG and governmental departments flagrantly flout the law because there is no accountability – in fact, the more they do so, the more they appear to thrive in terms of promotions and remuneration. I think that there should be serious prosecutions – but one only has to look at the outcome of the Connor Sparrowhawk case to realise that the authorities seem to be above the law and that injustice in this system is rife. Apologies for the length – there is just so much I could say but I hope that this condensed version makes sense!
It is a disgrace they way we allow people to treat our families who have paid in National Insurance all their lives and they are treated so badly. Do not give up any of you. Keep going. I fought and won eventually.
There appears to be a lot of confusion on here about the Continuing Healthcare (CHC) appeal process, with people conflating Independent Review Panel (IRP) with Local Resolution (LRM). These are completely different stages of the process and are not interchangeable.
The fist stage is so-called “Local Resolution”, which usually involves meeting with the CCG/CSU that made the original decision of ineligibility. If the CCG/CSU deems it necessary, the case will be returned to a multidisciplinary panel (MDP) which makes a further recommendation on eligibility. The person conducting the meeting CANNOT make a decision on eligibility: this must be done by a proper Multidisciplinary Team (MDT) (e.g. two nurses of different disciplines and a Local Authority (LA) rep).
If the outcome of this local appeal is negative, then, and only then, can you request a hearing with an IRP at NHS England. You cannot request IRP before local resolution has been exhausted. And no, it is not your inalienable right to have a hearing with NHS England (*see below).
Due to the volume of requests, NHS England now employs a Single Chair decision-making-process to sort the wheat from the chaff; if the Single Chair believes there is no evidence of eligibility, and thus no case for the CCG to answer, no IRP will be convened and you will receive a final decision at this stage. If you remain dissatisfied, you can complain to the Ombudsman, but it will only deal with issues of incorrect process, and not clinical judgements.
Finally, people here keep referring to “law” and “regulations” with regard to the CHC process, and even a comment above about the NHS “operating outside the law”. A word to the wise: there is no legislation for CHC, only a “framework” and “guidance” to be followed. There is no litigation involved, at any stage. There have been legal precedents set (Coughlan/Grogan/Dennison et al.) following judicial review, but this is very, very rare.
The fact remains that hardly any CHC cases end up in court because the eligibility criteria are almost totally subjective and the risks for solicitors too high . *The lack of a proper legal framework is what allows the NHS to get away with the shoddy practices described on this forum. It can be compelled to improve, but there is no legal obligation whatsoever.
Many law-firms have tried to get involved in CHC claims and a very small minority have been successful, largely by screening cases even more aggressively than the NHS and refusing to take on any but the strongest. A great deal more have gone bust in the process because they thought they could quote the Human Rights Act and cow the NHS into submission. Not so. To suggest the NHS is afraid of getting sued over CHC is wishful thinking.
I don’t want to defend the NHS – I think the way patients and their families are treated during the CHC process is appalling and in some cases unforgiveable – but neither do I think riling-up grieving families with misinformation is at all helpful.
I think Chris G’s handwash scenario makes the key factors clearer. But they insist on all key factors applying, not an And or Or. Has anyone tested the belief that you cannot take to Court without going through the entire arbitration process.Surely the courts have to allow some reasonableness of upwards of 5 years. For instance for a car insurance complaint you would write to the insurer who has to reply within around 3 weeks, then arbitration if you are not happy, this IS completely independent. Court action could follow that. This whole process could take you around 3- 6 months. I know I used to work in insurance. So if we are given a date for IRP around a years time, we will test this for you, without a solicitor since we know more now than any solicitor could do. It is up to the Courts to decide whether the arbitration process is long enough. We have had enough and are at breaking point.The Local Authority still want the “money” for care and are using bully tactics despite being out of time to sue. If we spend the money paying lawyers then so be it. Then, if the case is to be heard before IRP, then I very much doubt they will want to waste thousands on lawyers, we will see.
Hi everyone.
Long story short I am almost 5 years into this process. Went to Independent Review Panel (IRP) last October and most of what was discussed never made the report. They very conveniently left out anything that would have been seen as favourable to my Mum’s case and when I pointed this out to the NHS England representative I was told that “the report is not verbatim”!!! I then pointed out that if the report also represented the minutes of the meeting, (which they said it did) then it should at least be an accurate account of matters discussed. My case has now been with the Ombudsman for 7 months and just heard, surprise surprise, “complaint not upheld”! As a very brief summary Multidisciplinary Team (MDT) meeting took place January 15, Mum’s weightings 2/3 Severe 3/4 High and the remainder Moderate and Low. These weightings were then lowered at a closed door meeting 6 days later, for reasons that have never been explained other than a fabrication of intimidation by myself because I dared to produce a copy of the National Framework and questioned what they were saying, especially regarding well managed needs. The original Decision Support Tool (DST) documents which I watched both the nurse assessor and Local Authority (LA) representative have (by their own written admission) been destroyed so I have had no chance of proving what the original weightings were. The IRP flagged up that the fact that the nurse assessor destroyed the original DST would not have passed an audit trail, however they have done nothing to address this issue. I wonder how many others they have done this to. The Ombudsman has also done nothing to address this. Following his draft report he invited me to let him have my comments. I sent an 11 page letter detailing failings in the process, ie the LA representative not knowledgeable regarding my mother’s needs, no coordinator assigned, weightings lowered with no explanation, and the original DST destroyed/ not kept by both members of the MDT.He has refused to comment on any of these issues. This is all apparently fine with the Ombudsman!!!
I am now starting a further complaints procedure with them. My advice to anyone approaching IRP is to take very detailed notes and / or record the meeting, as my experience is that not everything discussed will make their report, especially if it is in your favour. The saga continues. Any pointers of how to approach the next step would be appreciated. I understand that I can request complete electronic copies of mum’s files from both the LA and CCG but am unsure how to do this.
Paul 3 weeks ago Reply
The National Framework is bunkum – it’s a tool that looks like it’s the definitive rules but it’s only for the NHS to misdirect delay and confuse people – The law is what applies.
If the IRP cannot deal with matters of law then what is the point of this arbitration when it cannot address the key case law on the primary health need principle.All we are doing is complaining about the application of the Guidelines only .The definition of arbitrator is of an impartial person being asked to make a decision to resolve a dispute.So what if this person(s )are not independent or agreed by both parties? You have not properly arbitrated? therefore you cannot be bound by it.And the decision is not final anyway as there is an option to appeal to the Ombudsman.My point in all this is, the only solution is Court action as the only impartial view you are ever going to get on this merrygo round.And further to Chris G on paying the LA debt , we were asked to pay the debt upfront ( By LA’s solicitors who incidently despite offering training on the Care Act don’t actually understand its content or having taken on the case have any knowledge of CHC matters and the law , never mind any understanding of the National Framework.)we were then asked to reclaim from the NHS.Would you pay a £10K gas bill you don’t owe and claim it back? I don’t think so….
I am currently awaiting an Independent Review Panel (IRP) for a retrospective review of Continuing Healthcare (CHC) funding for my late mother. NHS England sent a request to the CSU back in May for all documents to be sent to them. I have repeatedly e-mailed the CSU myself to ask why it still has not been done. The latest “excuse” is that the senior team member works from home! I was promised these documents 2 weeks ago. The IRP cannot be convened without any documents. What can I do?. I am extremely frustrated after 3 years of this tortuous process.
Hello Chris G
Can you explain why the appeals process has to be exhausted before a right to sue Arbitration has to do ” what is says on the tin”? Sounds to me Independent Review Panel is a re-run of the local appeal not independent and the same false rubbish quoted from the Decision Support Tool. Count me out !!! If I sue what will the Courts say? If arbitration isn’t fair or reasonable then surely you cannot be bound by its decision? Also the Courts will be bound by the Coughlan decision not the National Framework. If the Continuing Healthcare is retrospective then it is a monetary claim. I do get the Local Authority (LA) argument and that it should be easier to prove care beyond LA limits but what if the LA don’t sue us? You have an ongoing debt hanging around and also our own care fees which have still not been repaid.
Does anyone know whether a GP practice in England taking on a new patient, particularly a new patient who is a British citizen that has lived abroad for a few years and has relevant medical records abroad, is obliged either under their professional codes of conduct and / or legally to obtain the new patient’s old medical records from their previous GP practice in the UK and foreign doctor?
Thank you.
Hi Andrew – We have recently requested copies of our relatives notes at the Nursing home she is in, mentioning it was part of a subject Access request. After numerous attempts to get hold of the manager there he told us that he did not have the staff to do copies of all her notes, however he told us we were most welcome to come and view the notes anytime. That is unfortunately a little difficult for us as we live 250 miles away. We wondered too how we stand, although we don’t want to report them to ICO for fear of repercussions on our relative and the fact that the Manager is on our side & stated that he believed our relative should be getting full funding. It is a very difficult situation.
Thank you for your kind responses. As we live 250 miles away it is difficult to choose which notes to request, so have no option but to request them all. We have LPA. We really don’t want to antagonise the Nursing Home owner by reporting them to the Independent Commissioners Office as we are concerned about repercussions to my mother in law. Also the owner is currently on our side & believes that she should be receiving full funding.
Happy New Year! In our case I have just discovered that there is a care home file which we have never seen or had access to in which the care home has written details of incidents concerning our Loved One’s need, which have not been detailed deliberately in our Loved One’s daily care notes (we have had assessments in the past where previous assessors have described the home’s notes as lacking detail or inaccurate). We had already sent subject access requests to the care home for the time periods in question and so the data in this file should have been disclosed.
The Care Plans for our Loved One which we have seen deal with a specific snapshot in time. My experience is that care plans often miss needs; needs which add to the nature, intensity, complexity and/or complexity of a candidate for NHS Continuing Healthcare’s eligibility.
Yes the Coughlan bar is low, but many clinical commissioning groups don’t care what the Coughlan judgement says. They mark their own homework after all, and whether we like it or not, the default position for many CCG’s is to deny full NHS Continuing Healthcare.
Our experience so far is that it is necessary to prepare your case as if it will have to be appealed as far as the courts because the NHS gets to mark its own homework. Hopefully it won’t have to go that far because hopefully either an NHS England independent review or the Ombudsman will bring some much needed impartiality and compliance with the rule of law into the decision making.
If you believe there is relevant evidence that might assist your loved one’s case, logically it is sensible to get hold of all of that information, regardless of how much of it there may be and regardless that some of it may invariably not assist. If you were instructing lawyers act for your loved one that is what they are obliged to do professionally. Winning or losing a case sometimes turns on a few pieces of key evidence which have been sifted from a haystack of irrelevant material.
Very interesting comments Mr C G. Did not know the low level of medication Coughlan was on compared to our relative’s dozen or so drugs administered at least 4 different times of the day, and required 2 reg nurses for the pain patch, as 30 times more potent than morphine which also was not always effective as required additional pain relief. Massage increasingly during the claimed period which the nurse assessor downgraded and described as discomfort, yes really, why would you be on such a potent pain patch with just discomfort???. Also bedbound (mobility), and what that brings with it, the intensive turning schedule including during the night and inability to be weighed ( nutrition ) psychological as unable to move, bedbaths, hardly satisfactory (continence, hygiene issues with risks of infections) had 11 during the course of 1 year.,etc, etc.
As far as I understand it social needs are the ability to be part of normal life, bathing, going to the toilet, being mobile to go out or move about etc. Surely bedbound with TV, books and visitors is no measure of any real social activity or any quality of life for that matter. Would you tell a relative they have to pay to watch their own T.V, read their own books and see their own visitors whilst the other care they received and paid for is health care when the vast majority of the public when in hospital receive it free? Once you leave hospital although the care you need is the same i.e you are not going to recover further, because it is being provided by a home not in a hospital, you have to pay .
Paul. There are a lot of criminal offences out there but who is prosecuting??
Deceit and dishonesty is the name of the game. I have just received a copy of the Chair’s file following a request for an Independent Review Panel to find that there is no evidence of care needs contained within it, just a very small selection of GP records/hospital records supplied by the nursing home. The Commissioning Support Unit did not even request hospital or GP records and instead told me they were “extremely” difficult to obtain.
Question. can you make a Subject Access Request if the person it is about is now deceased and it is a retrospective review.
Hi – I’m not sure if this is the right place to ask a question but if someone could point me in right direction please. My father has been in a care home for over a year self funding. He has Parkinson’s and behaviour issues mainly relating to dementia. Still being properly diagnosed and he’s having a mental assessment. The care home has served him with notice as he was found late at night naked in another residents room. Lots of confusion ensued and the police were called. They said its common and nothing further would happen, however the home have said he now needs one to one care 24 hours which is going to cost a whopping £3360 a week and we must move him. They supposedly now can’t cope with his behaviour. The home have applied for an NHS Continuing Healthcare (CHC) assesment which we are awaiting and they think he needs a scan. His front loba area is deteriorating. However if we move him will to obvoiusly more affordable and suitable home will this immpede the CHC process and how can the home justify such a large amount of money? It will just mean the pots empty very rapid and then council will have to pick up tab. He has a DoLS and it seems they have a nurse outside his room but there’s a pressure pad to alert them also. Any info would be appreciated as i’m not sure where to turn.
There does not need to be any physical issues if the behaviour is enough to be challenging that it seriously puts that person or others at serious risk ( assume that being naked in another resident’s room is serious enough !!!) – then this domain of the Decision Support Tool (DST) has a Priority rating enough presumably to give eligibility on its own. What you don’t want to see is those needs being downgraded because the need is being managed with 1-1 and sedatives. Might be better rewriting your comment on another thread dealing with the process from the beginning rather than this thread about the appeals procedure.
I have been told by NHS England after requesting an Independent Review Panel that all the “evidence” contained in 2 large boxes has been sent from the Commissioning Support Unit (CSU) direct to them. Can I insist that all the evidence be put in the chair’s file and then sent to me. I get the impression that the CSU did not copy the evidence but just sent the 2 boxes so that NHS England have the originals. I am not getting any advice from NHS England of the exact procedure as to how I can view all the evidence myself before it is sent to the chair.
Jeff, you may find it will take about 18 months from time of request of retrospective review .We are waiting for an Independent Review Panel (IRP) date, now approaching 5 years since relative died. yes that long. As Paul says so easy to think all too much and give in. Well after recovering from surgery recently , with all that I have learned over the years about primary health, I noted all my healthcare needs during my overnight stay and I have to say my relatives needs involved more healthcare during that same 24 hour period.For a start I didn’t need turning every hour or more frequently if in pain . I wasn’t checked every hour overnignt.Why then was my care free?? if anyone has any recent advice about an IRP it will be greatly appreciated.
Assessors need to be retrained then as National Framework (the Guideline !) says it is to be Coughlan compliant so to abide by the principles of the National Framework is just that. Definition of compliant – “meeting or in accordance with rules or standards: ” So far pre-Independent Review Panel, we have received a flimsy folder with some chosen evidence, hardly a year’s worth of care notes, plans etc. It’s not just the original assessor, all staff involved in the process need retraining to ensure it is a fair appeals process. Definition of appeal – “an application to a higher Court for a decision to be reversed” The “higher Court” here (NHS England) are as flawed as the CCG, and apart from the Chair (who is still paid by the NH ) no-one else will be independent, probably all employed by the NHS. Now that would not be the case in a real court.
Roger
Very briefly, at the time of the Multidisciplinary Team assessment for Continuing Health Care my sister in law was in the later stages of vascular dementia, was doubly incontinent, completely unable to weight bear, was not aware that she was in hospital as a result of a fall (one of many documented falls by ambulance call out), unable to make any meaningful decision, very little food or liquid leading to extreme weight loss necessitating the need of food supplements.
NHS Continuing Healthcare was refused and instead NHS and Local Authority (LA) collaborated by LA accepting social care and NHS funding all health care. It seems to me that this split is an attempt by NHS to offload care home fees to the patient. This has resulted in my sister in law being means tested by LA and having to pay approx. 85% care home fees.
Am I right or wrong in interpreting the law as being an either or decision (either totally NHS or totally Social Services) depending on the level of medical needs?
She was discharged from hospital to a care home and about four weeks later (first week of Jan ’18) was readmitted to hospital in a complete state of unconsciousness. She is now unable to eat or drink and has been placed on end of life palliative care plan. The hospital today 22/01/18 has discharged her back to the care home whilst suffering from extreme swelling to one side of her face and also other areas. On arrival at the care home a district nurse suspected Sepsis examined her and is consulting regarding.
Today by post from the Chair of Independent Review Panel – the process was a complete paperwork exercise – stating the following:
“There was no requirement for rapid changes to the care and care plans. Overall then, the Chair felt that no primary heath need existed”
I have quoted all relevant case law and ombudsman rulings. I’ve pointed out the ‘incidental and ancillary’ limits of Social Services regarding health care involvement.
I really don’t understand why NHS Wales are refusing Continuing Healthcare.
Comments welcome
My mother was Fast Tracked in July and assessed in September. We were advised she no longer met the criteria for full funding even though she had deteriorated further. There was a Nurse Assessor at the meeting and the Care Home Manager as well as me. I was under the impression that the Care Home Manager was part of the Multidisciplinary Team (MDT) and so was she. After the meeting the Nurse Assessor downgraded some of the scores unilaterally without giving us the chance to make comments on the Decision Support Tool (DST) before it went to panel. Can she do this without discussion with the other member of the MDT? The Care Home Manager is not mentioned anywhere on the DST. If she was not deemed a member then is it possible for there to be only one member of the TEAM? Is this legal – it is not recommended in the National Framework which states there should be at least two. I would be grateful for any comments.
in reply to Glynis Evans
This may help, It’s all about the needs of Pamela Coughlan written in the format of a Decision Support Tool.
https://www.spinal.co.uk/wp-content/uploads/2015/08/Summary_of_Pamela_Coughlans_Care_Needs_For_Comparison.pdf
We had our Independent Review Panel (IRP) in 2018. At the end I requested that once the panel assessed the 12 domains, would they apply the Coughlan test? The chairperson said no. Only the National Framework. It was also clarified by a panel member, that the Coughlan case was in 1999, and only for Pamela Coughlan, and not relevant – verbatim. Even though I stated that the Coughlan case was law. This is the attitude we are up against. More importantly, how are these IRP panel member getting trained!
Further to my first reply regarding the families second Independent Review Panel (IRP) held in 2018, which covered a review period starting from 2006.
I specifically informed the IRP panel that the term “Primary Health need” was not created until October of 2007. That the local Strategic Health Authority criteria dated April 2003, was in place. Which I showed them a copy of.
The opening “Background” section, for this document even refers to the Coughlan case to clarify the responsibilities of the NHS and Social Services.( Which I previously mentioned in my first reply, that the panel would ignore and use the National Framework.)
The only section that refers to the Eligibility Criteria for NHS Continuing Healthcare, is a table , which states that it will be based on the following key issues ( with this particular item describing our relative with Alzheimer’s in a nutshell ):-
“ The individual has a deteriorating or unstable medical, physical or mental health condition and requires regular supervision by a member of the NHS Multi-Disciplinary Team such as the consultant, palliative care, therapy or other NHS member of the team”.
Our relative had to have their medication monitored and adjusted by their psychiatric consultant, among the nursing care in the EMI section. We even have letters from their GP stating that 24×7 care is the best place for them, in a safe environment to meet their health and care needs.The EMI care home had over 28 various reports such as “Collaborative Care”, hourly, daily,,weekly,monthly and annual reports, documented for the patient, which I would classify as “nursing care” alone.
The question is then; How will the IRP assess them, if all they know is the National Framework “Primary Health need”, which is not applicable, but only after October 2007?
Second Item: Could someone please post a link to the important information regarding the “S107” ( Standing Rules?) which I keep coming across.
Thank you
Hello we have appealed to the Independent Review Panel and they have announced their decision that they agree with the review panels decision that mother was not eligible for NHS Continuing Healthcare, however we were not invited to attend at the appeal and the decision has been made behind closed doors. Should we have been there to argue our case?? We now have to consider an appeal to the Ombudsman. Has anyone had any luck here?
That’s disgraceful Judy – they get worse. We sent our appeal documents to Independent Review Panel (not independent as you say – this one is in adjoining council). They have denied receiving them despite having a signature from their receptionist! We have it in writing from home, GP & hospital that my mother-in-law was receiving palliative care & an advanced end of life care plane was in place, yet local appeal panel stated that “there was no end of life care plan & she was not receiving palliative care”. It is the most corrupt system I have ever come across, with extortionately over paid staff who are completely unprofessional, yet it seems nothing can be done.
Just received the outcome of our appeal to the Ombudsman and as expected another complete waste of time and effort, they have just agreed with the outcome of the IRP, which we were not even invited to attend, and the original outcome of the CCG’s decision. They agree with the statement that the NHSE’s view on complexity was that my mothers needs were well within what a local authority could be expected to legally provide with support from visiting NHS services, likewise they repeat the same in connection with unpredictability, nature and intensity. As previously posted my mother could do nothing for herself, she was doubly incontinent, had Alzheimer’s and did not recognise anyone or know time of day or night or who or where she was, had to be fed by hand, medicated, dressed, moved by hoists, had severe bed sores, chronic kidney disease, hypertensive disease, she was just a shell unable to communicate her needs or do anything at all for herself. This has now brought to the end many years of fighting and jumping through all these hoops, we do not have the resources or the will to take this matter to Court as that would only prolong the stress and have to now regrettably draw a line under the matter and move on.
Ladies and gentlemen
Two things. First, the right to “due process” i.e. that the state cannot take a citizens possessions or deprive them of their rights unless a fair (which includes a right for all relevant evidence to be seen by the parties and commented on and challenged) and impartial hearing has taken place, goes back to Magna Carta in 1215 which precedes the Human Rights Act 1998 by several centuries.
I assume CCGs are agencies of the state.
Second, the legislation which governs the powers of the Parliamentary & Health Service Ombudsman (“PHSO”) includes a power that allows the PHSO to investigate matters of “clinical judgement.” The PHSO has had the power to do this since 1996/1997.
Isn’t the NHS CHC process, if it is about anything at all, about making a clinical judgement whether someone has a primary health need?
The PHSO may not be exercising it’s power in that respect. But there is nothing to stop it doing so. I appreciate that there is a probably a cost in doing so, but if these assessments aren’t being done accurately in a significant number of instances isn’t that is something the PHSO should be investigating according to its statutory remit?
My understanding is that, unless he no longer makes use of them, the PHSO has access to his own panel of clinical advisers that he can call on, who can look at the clinical facts and provide the PHSO case workers with expert advice about health needs.
If that isn’t so then I do not understand how the PHSO was able in the past to make decisions in the well known benchmark NHS CHC cases, such as Cambridgeshire Health Authority and Primary Care Trust (aka the Pointon case), Wigan and Bolton Health Authority and Bolton Hospitals NHS Trust, Berkshire Health Authority, the former Shropshire Health Authority and Birmingham Health Authority, which reversed decisions made previously by health bodies responsible for assessing eligibility for NHS CHC.
If the PHSO and his staff are failing to exercise properly the powers available to them, then it is not fit for purpose, and complaints should be made to our parliamentarians.
If our MPs don’t know there is a problem, how can they fix it?
Her Majesty’s Government plan to replace the PHSO and Local Goverment Ombudsmen with a Public Services Ombudsman. The same failings should not be allowed to continue when the new body starts its work.
Had a Virtual IRP for mum on 30/11. The IRP refused to hear my evidence which I have had since the DST. I just argued for 90 minutes about an imaginary period that evidence can be accepted for e.g one day, a week a couple of months. My evidence stretched back 9 months and factually based on Care Home notes which I had analysed to get the relevant evidence to fight the stopping of CHC. I told the IRP that nowhere was it stated that evidence is only to be allowed for a specific time period. It does not state anything in the National Framework and DST. The IRP was unfair and bias. Have now sent all papers to PHSO for consideration.
Oh dear. I have an IRP hearing next thursday on behalf of my father in law who has paranoid schizophrenia and dementia. Having read many of the posts on here, I am not at all confident of a fair hearing. I have prepared for the IRP assiduously having spent as Admiral Mathias did, hundreds of hours, literally on the subject of CHC. But I am lucky because I am now retired. Thus far I have of course been turned down by both the ICB and also the ICB appeals team at an LRP, notwithstanding that the procedures adopted by the MDT were utterly appalling and bordering on the dishonest.
If it is any help to others, I submitted to the ICB appeals people a 100 page document containing all my arguments not only about procedural breaches but also about DST scoring and the primary health need. This bundle included verbatim notes taken by my brother, a former director of Psychopathy and Psychotherapy at a major NHS trust. What was said in the notes was not of course recorded by the assessors and included clear admissions that the majority of needs were well managed and that I would be allowed to discuss these domain by domain as well as the 4 characteristics of need. The lead assessor did not even know what the Coughlan case was, despite the fact that the Framework outlines the test verbatim on at least 2 occasions and a synopsis is included in the appendices. I was not allowed to argue either well managed needs or anything about the PHN or indeed Coughlan or the limits of local authority care because the lead assessor, after 6.1/2 hours of hearing, shut down the meeting unilaterally, despite promises at the outset that I would be allowed time to argue them. So, notes are gold dust and people should try to take along a note taker to the hearings.
The appeal decision by the LRP was basically a rambling non- entity in which none of my arguments was addressed except by the reiteration of large chunks verbatim of the Framework. I belatedly realise that the documents I submitted were beyond the appeal nurse’s pay grade.
I have now submitted a fresh 63 page document to the IRP, which in part is highly technical. I have some advantage in being a solicitor, now non practising, so any IRP bullying won’t work since I spent almost 40 years cross examining people in court. But I can’t stop them from closing down the hearing.
I think that my advice, for what it’s worth, must be to prepare your case in advance and in writing and submit that before the hearing. In that way, you are not just turning up like a lamb to the slaughter, and can make frequent reference to what is written. This can also be compiled at leisure and when not under the pressure of a hearing with a panel.
In this connection, I was asked to make oral representations at the LRP panel and simply said that I had supplied all my arguments on paper and that there was little to add to that. No pressure then. I was not challenged at the hearing but expect to put up a robust defence to what I have submitted at the IRP, if indeed they understand or want to understand my arguments which are based, inter alia, on how fluctuating needs should be evaluated and how the time frame of 3 months imposed by the ICB is not relevant or only partially relevant to this situation.Every one of my arguments is backed up by solid evidence, and I am hoping against expectation that there will be someone on the panel who understands them or wants to understand them.
If, therefore, people come before a truly independant IRP, then having prepared and submitted your arguments to them previously, the time can be taken up by discussion about the points raised in writing and not wasted by having to set out your case as well.