CHC: Finally after 18 months of legal quibbling...

[Dave63]

I'm not up to date on the IRP process as we're at the post LRM phase and although successful it's turning out to be more of the same - maladministration and incompetence.

From the little I've read about IRP's the standout part is:

"The IRP can only make a ‘recommendation’ to the CCG about eligibility, but in practice, the CCG generally accepts the findings of the IRP"

If the IRP have found there to be a primary health need and have recommended an eligible decision and the ICB do not accept that finding without a further review then what's the point of the IRP?

Chin up @Palerider and don't let the b*ggers get you down.

 

[Palerider]

I'm not up to date on the IRP process as we're at the post LRM phase and although successful it's turning out to be more of the same - maladministration and incompetence.

From the little I've read about IRP's the standout part is:

"The IRP can only make a ‘recommendation’ to the CCG about eligibility, but in practice, the CCG generally accepts the findings of the IRP"

If the IRP have found there to be a primary health need and have recommended an eligible decision and the ICB do not accept that finding without a further review then what's the point of the IRP?

Chin up @Palerider and don't let the b*ggers get you down.

The purpose of this further ICB review is as they say to decide if funding should continue. I suspect that they wish to now test outside of the time period to see if they can remove any further funding moving forward. They have not actually given any decision on the IRPs recommendation as yet.

 

[Palerider]

10 days to go. Unsure if the ICB have asked for any further care plans / documentation -nothing has been mentioned at the CH we have however asked for everything outside of the time period moving forwards.

 

[Palerider]

I am at a point where I am seriously thinking of how my mums treatment by the CHC can be addressed further. The ombudsman is one point but I am seriously thinking if it is possible to seek Judicial Review even though a recent attempt has failed due to the last application moving it to the political domain.

How to stand up to power: Judicial Review & the Human Rights Act - Liberty

How can I stand up to power? Find out more about using the Human Rights Act 1998 and judicial review to challenge unlawful decisions, actions and inaction of the state.

www.libertyhumanrights.org.uk

 

[Dave63]

I am at a point where I am seriously thinking of how my mums treatment by the CHC can be addressed further. The ombudsman is one point but I am seriously thinking if it is possible to seek Judicial Review even though a recent attempt has failed due to the last application moving it to the political domain.

It's definitely possible to seek judicial review but the costs involved are pretty much prohibitive for most individuals. Also, putting my tin hat on for a second, it takes you into the realm of fighting the 'establishment' side who have limitless resources and don't want ordinary people questioning their established way of doing things. Rear Admiral Mathias tried which may be the case you referred to?

Maybe what it needs is massive attention from the tv and media to force the people responsible to answer and show accountability for their actions and bring it to the forefront. Although, the media are only interested if it concerns an embarassing scandal involving a celebrity these days.

The NHS Continuing Healthcare (CHC) Scandal

Rear Admiral (Ret'd) Philip Mathias

www.crowdjustice.com

 

[Palerider]

It's definitely possible to seek judicial review but the costs involved are pretty much prohibitive for most individuals. Also, putting my tin hat on for a second, it takes you into the realm of fighting the 'establishment' side who have limitless resources and don't want ordinary people questioning their established way of doing things. Rear Admiral Mathias tried which may be the case you referred to?

Maybe what it needs is massive attention from the tv and media to force the people responsible to answer and show accountability for their actions and bring it to the forefront. Although, the media are only interested if it concerns an embarassing scandal involving a celebrity these days.

The NHS Continuing Healthcare (CHC) Scandal

Rear Admiral (Ret'd) Philip Mathias

www.crowdjustice.com

I think the most important thing is not to be put off by things that seem out of reach because that's how the system gains by avoiding change. Yes I am very familiar with the Mathias application and the reasons as to why Judicial Review was refused. I read the application and the courts reason for refusal. It is a bold step, but there are differences in my mums case in comparison. I have chatted with a old friend of mine who works in NHS negligence cases and he agrees if the funding hurdle can be overcome. The problem is having already had one campaign would the public be willing to give to another.

 

[Daisymay1]

I'll watch your thread and very best wishes with the appeal.

Sorry I don't have any formal help I can offer as my Dad's just coming up to the end of his assessment period in an EMI nursing home after two months in hospital and we're just preparing for the CHC to get involved for their assessment procedures. What I can say though is the process from before diagnosis through to where you are at it seems is just unbelievably non-service user friendly, not transparent, every SS does things differently probably to save them money if they can, we're now on our fourth social worker etc etc.........

I worked in a local authority many years ago but then private sector ever since (over 40 years total working life) and, without getting political as it's not about politics, local authority SS departments and their procedures in my opinion need completely overhauling! It's enough having to see a loved one going rapidly downhill with dementia and other health issues never mind having to deal with SS people who all say different things, waste time completing forms when we're then told that their completed form can't be accepted and another one needs completing, notes are not kept up to date, competency leaves a lot to be desired and I could go on.................

I'm not sure whether this is allowed in this Forum so please correct me if not but I'm considering starting a campaign to gain enough "signatures" to force a debate in parliament about what it seems a lot of us on here are having to go through with SS to ensure our loved one's care is decent and fair. Perhaps someone knows if this has already been done??? It needs parliament involved to tell SS what they are and are not allowed to do rather than being vague about particularly the early part of the process, social workers need competencies improving so they're all singing from the same hymn sheet and know the rules etc.........I know the process is complicated and every person's dementia is their own but there must be something better than this almost "make it up as we go along" surely. I've already kicked up some stinks and SS have met me halfway as it were but really I am looking after my Dad and Mum and don't really have time/energy to fight everyone along this line. Maybe this rant also applies to the CHC people, I don't know as yet, are they LA people or central government or a mix?

Apologies, I feel better for my rant to you but I am serious about the signatures issue. Best wishes to everyone who's having the same fights, all the posts on here help tremendously.

Something needs to be done. Carers have enough to deal with without the minefield of CHC

 

[Palerider]

Todays CHC review is over and I am sat in my car with a banging frontal headache. The situation is that despite the IRPs very clear message and acceptance at regional level the local CHC have only agreed thus far to refund 3 months out of 29 months funding for care. Todays review was not a full DST but a tick box exercise to see if things have 'improved' meaning they can say mum is no longer eligible or they have stayed the same. We found that in total as a result of the meeting that some domains were infact worse. It will be interesting to see if there are any attempts to fudge todays findings. We will know next week. I am stunned by this blatent refusal to accept the IRPs recomendations and there are no exceptional circumstances

 

[Helly68]

@Palerider - that is really shocking. So hard for you when you have been on the process so long, and have a lot of other things to contend with. CHC really is the process where they do all they can to avoid paying. Awful.

 

[Scarlet Lady]

Absolutely agree, @Helly68 . The biggest question here is how much money has been spent in dragging this entire case through the courts for so long? I’m betting it’s way, way more than if @Palerider ’s mum had been awarded what she was clearly entitled to from the beginning. This is not just incompetence, it’s criminal negligence. Utterly, utterly dreadful. Makes me despair about living in this broken country, which has no political leadership and no moral compass.

 

[Dave63]

I'm not surprised you have a headache @Palerider - I'd be absolutely livid. What on earth is the point of the IRP if they refuse to accept it's findings?

Was there a checklist done prior to the MDT? If so, what's their rationale for not reimbursing back to the 29th day after they received that checklist as they are obliged to do?

The issues people are facing nationally with regard to CHC shows a clear policy of deliberate obstruction by ICB's to the point which, as @Scarlet Lady says, is criminal.

 

[Palerider]

I have work tomorrow so need to go and decompress before I retire as it is also important not to get flustered by these things.

In answer @Dave63 -there was no checklist done prior to today's meeting as this was not an MDT DST per se meeting, it was essentially to see if anything had changed conducted by a single CHC assessor with a simple tick box form as to yes or no by each domain who then reports back to her manager for the decision making as in anything that likely favours the local ICB who clearly are being obstructive. If there is any room for the ICB to conduct yet another DST then we go back round again. As to the funding issue mums legal advocate is a bit stunned and will discuss with her director as to our next steps. I personally feel it is time to take over fully and just approach the Parliamentary Health Ombudsman as we are past the IPR stage in any event and as far as I am aware the ICB have no plausible exceptional circumstances to make for not following the regional advice, if they did they would have raised those by now.

It is not only criminal @Scarlet Lady and @Helly68 it is outright discrimination in a number of ways.

 

[Palerider]

I have initiated a complaint and concern with the Parliamentary Health Ombudsman (PHO) and forwarded the evdence I have from the CHC. Awaiting their response.

 

[Dave63]

Sorry @Palerider I get a bit forgetful sometimes. Is the situation that your mum was in receipt of CHC and at review the assessor has deemed your mums needs as reduced and CHC has been stopped?

I have initiated a complaint and concern with the Parliamentary Health Ombudsman (PHO) and forwarded the evdence I have from the CHC. Awaiting their response.

Fingers, toes and everything crossed for you.

 

[Palerider]

I had so far managed to bat away this whole affair from making me feel anxious and also incredibly low, but today those feelings have finally crept in -not good in someone who has major depressive disorder which has plagued me for years.

Yesterday mums legal team presented representations from Wednesday's meeting to the local manager / commissioner who is blocking the current process, however I am also weary of legal professionals sitting on their hands in the hope of gaining more profit from someone's difficult circumstances and I have that feeling now. There is not much more they can do that I cannot do for myself hereon in, that said I will utilise what they have provided so far and they have yet to see what the outcome is next week. I have decided not to sit on my hands any longer and there is need to start applying some pressure here especially when the local ICB have been non-communicative and certainly not transparent as to their reasons for this latest round of yet more obstruction.

At the last attempt by Rear Admiral Mathias (Retired) for judicial review The Rt. Hon. Lord Justice Bean said this - a staggering statement when stating: "I note that the Public Accounts Committee (PAC) has found that there are systemic failures in the funding of patients with continuing healthcare needs. If they and the Clamant (sic) are right, the remedy is in the political sphere, not the courts".

So with the above in mind let's see what the politicians have to say and do. I am also writing to the regional office where the IRP decision was accepted with a list of concerns around this matter. Failing that I will see if our national press would be interested in yet another CHC scandal

Yes @Dave63 my mum was receiving CHC funding at the time of the pandemic, but when budgets started to shrink post pandemic it was very clear they were working through their long list of who potentially they could discount as being eligible -the assessment that triggered this whole fiasco was in March 2021 -this has continued since then.

 

[Palerider]

I confess today has been one of the lowest moments in the last 8 years of this journey and there have been some real sinkers before this one. Luckily the local bridge is too low and the river too shallow to jump off and the local buildings are also too short otherwise I think I may have -that is how I feel. If I had the money to get to Switzerland I would, luckily and I take it as an omen I can't. What is the point of any of this when the system can just beat you down over and over again? My head is struggling to deal with any of this now, but my heart keeps me focussed on my mum.

I have dispensed two emails to two MPs one is mine the other mums old MP who was very helpful and supportive at the beginning of my journey when she helped to get the LA to find a CH place urgently -as I remember it was her PA who also had experience with her mum.

Anyway here I am Palerider lost for words and lost for any useful / constructive self help and sick of the welfare state including working in it -for me a double whammy. Sadly I did not win last nights lotto nor the one last Wednesday.

I have discovered an interesting website called 'Care to be Different' which acknowledges the downplay that goes on by the CHC -so with some small vein of hope and I am contacting them as well.

I am utterly done after so much I have nothing much left and frankly the vino rouge is currently helping to numb the worse parts of how I feel for now.

 

[Dave63]

Hi @Palerider - I'm sorry to hear you're feeling so low at the moment and completely understand why. I know it's easy to say but sometimes for the sake of our own mental health it may help to take a step back for while and try to focus on something more positive, even if it's only for a week or so. Please take sometime to look after yourself @Palerider.

The problem I found was that battling the CHC process and those responsible for administering it becomes all consuming and the frustrations caused me to start acting like Mr Angry due to the constant worry, sleepless nights and thoughts that I was letting mum down. I felt completely and totally out of my depth at times and worried I was making a bad situation worse because of the exasperated looks I would get when I was banging my CHC drum.

I have discovered an interesting website called 'Care to be Different' which acknowledges the downplay that goes on by the CHC -so with some small vein of hope and I am contacting them as well.

This site was (and still is) my go to resource for everything CHC. It was originally started by a lady who's parents were in care with Parkinson's and dementia and she started it as a way of detailing her journey through the appalling CHC system. It's now run by the legal firm who successfully represented my mum at appeal. If you do speak with them I have nothing but good things to say about them. They are incredibly knowledgeable about every part of the system and very transparent about the chances of success or failure.

Have a virtual vino rouge on me and put your feet up for a while

 

[Palerider]

Hi @Palerider - I'm sorry to hear you're feeling so low at the moment and completely understand why. I know it's easy to say but sometimes for the sake of our own mental health it may help to take a step back for while and try to focus on something more positive, even if it's only for a week or so. Please take sometime to look after yourself @Palerider.

The problem I found was that battling the CHC process and those responsible for administering it becomes all consuming and the frustrations caused me to start acting like Mr Angry due to the constant worry, sleepless nights and thoughts that I was letting mum down. I felt completely and totally out of my depth at times and worried I was making a bad situation worse because of the exasperated looks I would get when I was banging my CHC drum.



This site was (and still is) my go to resource for everything CHC. It was originally started by a lady who's parents were in care with Parkinson's and dementia and she started it as a way of detailing her journey through the appalling CHC system. It's now run by the legal firm who successfully represented my mum at appeal. If you do speak with them I have nothing but good things to say about them. They are incredibly knowledgeable about every part of the system and very transparent about the chances of success or failure.

Have a virtual vino rouge on me and put your feet up for a while

Thanks for your supportive comments @Dave63 but as you know this is not something anyone can step away from, the longer matters are left the bigger the weight the CHC carries, so it is important to be on it 100%.

Today I have emailed the regional exec because I know just waiting for a response will take forever and there has been no indication of just exactly what the local ICB are considering and how they are considering matters -it is all a big mystery considering the NHS these days is supposed to be transparent and candid -clearly the NHS CHC are unable to meet this national NHS expectation of 'openness'.

So here is my direct email to the regional North West NHS:

To: North West Regional Team Continuing Healthcare Team​

From: ***************​

27th September 2023​

Your Ref:1******​

​

NHS Continuing Healthcare Independent Review Procedure Review Outcome for Mrs **** ********** and ongoing issues.​

​

I am **** *********** son and representative who instructed ******** **** to act on her behalf concerning her inaccurate Continuing Healthcare funding assessments and further sort an Independent Review Panel which finally acknowledged that there was a primary health need. The outcome letter from that IRP is very clear and maps out the significant reasons as to why Mrs *********** is eligible. This outcome as you are aware was accepted at regional level. The response since then from the local commissioners has been slow and evasive as to their current reasons for not accepting this outcome and they have not as far as I am aware raised any exceptional circumstances. They have also refused to fully reimburse care costs offering only 3 months out of the timeframe this matter has been outstanding.​

​

We have now been met with a further meeting on 20th September 2023 which I was informed was a tick box exercise to see if anything had changed and that a further DST may be required. I can categorically say that nothing has changed since the original DST that was called into question and in fact things have got worse. I have not received any clear explanation as to why this is now necessary other than to see if funding should continue. I feel this is a somewhat vague explanation and does not address the outstanding period of reimbursement. In fact, I feel there is a very serious lack of transparency here and that there seems to be some considerable bias despite the IRP strong case for eligibility, it seems to me that there is an evasiveness apparent here by the CHC in avoiding any accountability for its inconsistent and questionable assessment process and decision making.​

​

I have deep concerns that an injustice is happening again, and I am powerless to act only to be faced with the prospect of yet another DST and yet another appeal process -it seems to become a never-ending process with no resolution that works in the CHC’s favour with no real power for redress.​

​

I am not satisfied that my mother is being dealt with fairly and further that avoidance strategies are being used rather than honour the IRP’s findings and accept their decision. It is unfathomable that a primary health need would no longer exist in a person who has worsening dementia with co-morbidities who needs EMI placement and very clearly in the meeting of 20th September has in fact got worse.​

​

Regards​

***** *************​

 

[Dave63]

Finger crossed you get some sort of positive response.
Looks like we're in the same region. My battle is with Lancs and South Cumbria ICB who take dysfunction to another level.

 

[Palerider]

Its been a tough 2 plus years and the last few weeks have been a real slog but never give up when it comes to NHS CHC. My emails to the MP's only had one response back and that was from mums old MP who although unable to help was keen to if she could have, but alas mum had to move out of area to her new EMI unit 3 years ago now (give or take a few months). The Parliamentary Health Ombudsman got back to me and have accepted the complaint, however there is a 3 to 4 month wait before they can investigate .

I decided to seek some legal advice from 'Care to be Different' who duly obliged and were very helpful in emailing me their advice based on their significant experience and they did not charge me -turns out I was right all along. I wrote to NHS England myself cutting out mums legal advocate team who I will be asking for a refund later. Today at 18:13 I had received an email from NHS England advising me they had contacted the ICB and they will be contacting my legal team to arrange reimbursement in line with the CHC redress guidance. Obviously I don't know what arrangement this will be or if mums funding will now continue but it is finally a move in the right direction than where we were going a week ago and I am not best pleased with the company I have used as they should have been on this not sitting on their hands. Lesson learned!