Continuing Healthcare Independent Review - questions to ask

Published 21/12/2016

Please note: This article was published prior to July 2022, and some information may be outdated.

The Continuing Healthcare Independent Review Panel (IRP) stage is not immune from criticism by families

The IRP stage of the Continuing Healthcare funding appeal process comes after all assessments and despute resolution processes have been exhausted at local CCG level.

The IRP is supposed to give families an opportunity for someone to take a fresh and independent look at their Continuing Healthcare case.

However, some families report that they feel the IRP panel has been biased or lacking in knowledge of the case they are reviewing. Some families also report being sat face to face with the assessors from their own local CCG who carried out the potentially flawed assessments in the first place – and whose behaviour may have been aggressive and intimidating during that process. This is the feedback we have received from some families.

The IRP process is organised by NHS England. It must – at all times – be impartial. If you have reason to believe that the IRP in your case was not impartial, you may find these points helpful:

1. What if no Panel is convened?

The National Framework Annex E paragraph 14 (Page 129) states:

“The Board does have the right to decide in any individual case not to convene an IRP. It is expected that such a decision will be confined to those cases where the individual falls well outside the eligibility criteria, or where the case is very clearly not appropriate for the IRP to consider. Before taking such a decision, the Board should seek the advice of the chair of the IRP, who may require independent clinical advice. In all cases where a decision not to convene an IRP is made, the Board should give the individual, their family or carer a full written explanation of the basis of its decision, together with a reminder of their rights under the NHS complaints procedure.”

Let’s look at the phrase, “where the individual falls well outside the eligibility criteria”. Who has decided that? If you’re in this situation, make it very clear you expect to know how that point has been decided impartially, who decided it – and why. How has it been justified in your case?

2. Is the chair independent?

The chair of the IRP MUST be independent and any advice the chair may have obtained relating to the clinical needs of the person being reviewed must also be independent. Ask where the chair has obtained the advice. The NHS England Operating Model for NHS Continuing Healthcare further states that:

“IRP chairs are independent. They are not employed in the NHS or social care and have been appointed because they are able to chair review panel meetings with impartiality and understanding.”

Make sure you are satisfied that this true in your relative’s case.

3. Who is on the Panel?

NHS England sets out the requirements for who should be on an IRP panel and they mention the ‘clinical advisor’. Make sure you ask who the clinical advisor is, how they justify their impartiality and what potential conflicts of interest might be relevant regarding their day-to-day work and reporting structure within the CCG.

These are the essential people who should be at the IRP:

an independent chair
a representative nominated by the CCG and who is not involved in the case
a representative from the Local Authority and who is not involved in the case
at times, also a clinical advisor
a notetaker
and of course the family representative(s)

It probably won’t escape most families’ notice that, although the CCG representative should not be involved in the case, that person does of course work for the same CCG that holds the purse strings.

There may also be one of the CCG assessors who carried out original assessment and who is there to answer questions from the Panel about why they refused to recommend Continuing Healthcare funding.

There should also be a facilitator/administrator available to the family before and after the IRP – to answer questions and arrange the actual IRP and the date. This person is not on the actual Panel.

Extra tips about Independent Review Panel hearings

This video, What to expect from an Independent Review Panel, highlights what NHS England says should happen at an IRP. It’s produced by NHS England and it obviously portrays a straightforward process. Many families report that it doesn’t always happen this way, so compare this to what happens/happened at your own IRP, and complain in the strongest terms if you believe the IRP hasn’t been conducted fairly or impartially.

Note these points in particular:

Check that each member of the Panel has received AND read AND understood the paperwork relating to your case. It may be a substantial amount of paperwork; Panel members still have a duty to properly understand your case and your relative’s care needs.

Some families report being told that there is a time limit for the actual IRP meeting. It needs to take as along as it takes. If there is a substantial amount of paperwork then of course it’s going to take longer – and that’s just fine. Don’t let anyone tell you the meeting has to stop or the process be curtailed just because the Panel members need to be somewhere else. This is your appeal – and it must be thorough.

Prepare really well in advance. Make sure you know the eligibility criteria inside out and how your relative should have scored in each domain – and why. Make sure you’ve read the Continuing Healthcare guidelines and you are ready to highlight everything you believe to have been done incorrectly in your case.

Address every point you need to – and every point you disagree with.

Hold the members of the Panel to account over their statements and assumptions. They MUST abide by the law and the Continuing Healthcare guidelines.

Tagged Categories: CHC essentials, CHC funding, MDTs, NHS Continuing Healthcare, Requiring advocacy

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26 Comments

Jaxson smith April 30, 2022 at 12:54 pm

What if you have a feeling that the IRP panel wasn’t framework compliant ie staff worked for the nhs. Would that mean the panel would have to be reconvened or complain to the PHSO

Ian Grimmett August 3, 2019 at 11:50 am

Hi all.
We are towards the end of four years hard, hard slog with a claim for CHC.
We have jumped through all the hoops, presented irrefutable and proven evidence of failures to follow the NF and other published guidances for those involved, all to no avail to date.
We have even written out the failures individually and quoted the relevant legislation
At the beginning we experienced alterations to documents, outright lies from those who you would think would not do so.
There were failures from :-no social services assessment at the very beginning of the current claim (totally against NF) failure to ensure members of boards were in accordance with the regulations, various other failures but, each of the boards we attended totally ignored all the evidence and also refused to accept video evidence which we were entitled to show.
They interpret the regulations to suit themselves, again, against the NF.
For those starting on this horrendous journey, beware:- It is likely to be endless time, pressure and is a huge learning curve.
Do not trust what you are told by by anybody on the opposition.
Read and digest the NF and associated published guidance notes that those involved have to follow. All docs. required are available free on the internet but it is daunting.
Over the years we have become more knowledgeable than those who make up the boards, they hate that.
We are now with the Ombudsman who, to be fair, have shown more interest than any other boards or review panels we attended.
Since starting the claimant has died.
We have boxes and boxes of documentation that has resulted from all this.
The stress we have experienced has been tremendous and we have, over the years, spent hundreds of hours reading and understanding the application system and the regulations and also preparing for the various panels and meetings.
To be fair to those following the system, we have been totally honest with thecontent of this reply, so, be warned.

Alice August 2, 2019 at 8:01 pm

Having recently had our IRP enquiry I have a long list of complaints including there being no Independent Chair present and the process being rushed and not conforming to the required process.

Would you recommend we complain and ask for a re-hearing immediately or wait for the decision and if necessary appeal?
They told us we would have to wait 6-8 weeks for a decision. We don't want to miss the boat. The whole process was alarmingly different to what we expected from the guidelines.

Thank you for a hugely helpful website and forum.

Care to be Different August 3, 2019 at 6:42 am

Hi Alice - there is no further right to appeal an IRP, you can complain to the Ombudsman however if the outcome is negative. Please do not hesitate to contact us direct if you would like to chat it through with us. 0161 979 0430. Kind regards

Alison August 2, 2019 at 7:56 pm

Have tried to view the video above " What to Expect from an IRP Enquiry" but it comes up as " not available".
I would be interested in watching this if it can be re-instated.
Many thanks

Dave July 4, 2018 at 7:05 pm

Hello everyone, I have finally got a date for my Independent Review Panel for my late father (covering a retrospective claim from 2011). I'm looking for any advice or guidance on how people have found these meetings and how to approach them. I'm expecting it to be a tick box exercise with them simply saying "no". I have done a Google search on the Independent Chair. This person worked in the NHS for many years (but I'm not clear if they still do). Even if they no longer work in the NHS surely this is a confict and not independent? I will ask politely in the meeting how they are impartial/independent. As it was a retrospective claim the people from the CCG didn't even know my dad and based their findings on GP notes (my GP couldn't be bothered to even see my dad when he was ill), hospital notes and the nursing home. Any advice/guidance on the whole meeting approach would be appreciated.

Martin Johnson March 14, 2017 at 8:57 pm

Since making a retrospective claim in September 2012 for my mother who passed away in February 2011, we have finally reached the stage of an Independent Review Panel (IRP) to be held in April.
I received this morning 3 lever-arch files full of documents covering GP notes, Care Home notes and correspondence copies covering the years 2007 to 2011. They are overwhelming!! I don't quite know where to start with them and would value any comments from anyone who has experience of a similar situation.
Also, my initial claim covered the years 2004 until 2011, but the CCG say Mam was only eligible for a full assessment from July 2007. I have asked the IRP to take into account our claim for the years 2004 to 2007, but they say their remit is only for 2007 to 2011 and I have to speak to the CCG for the 2004/2007 period. I can't believe that I have to go through the whole procedure again?

Amanda Weeks March 6, 2017 at 1:17 pm

Now nearly 2 years on from a Multidisciplinary Team (MDT) assessment for CHC, to date got as far as requesting an Independent Review Panel (IRP) hearing, just received a letter saying the Clinical Commissioning Group (CCG) have agreed to re-visit, so they are closing he case, with the comment, if I do not agree with the outcome I can ask for the case to be re-opened.
It is just delay after delay. We had to apply for a deferred payment agreement, in the interim, as there is no money to pay car fees, to date the LA have had all the paperwork for 14 months with no contract coming from them. The activity is outsourced by the LA and the incompetence is breathtaking. The Care Act, and the CHC Guidelines are just ignored over and over again, it was 5 months after being admitted to a care home before a Care Needs Assessment by the LA was carried out, even though they arranged the placement. Nothing you can do to bring them to book.

John February 15, 2017 at 11:16 pm

My sentiments exactly Ian, yet my son has been made to pay and I think the CCG think I am not as clever as they think they are?

Ian grimmett February 15, 2017 at 4:03 pm

I am not an expert but common sense tells me that a personal injury claim should not have any effect on any part of the NHS process that would normally be available to anybody who was not going through a personal injury process?
I have never seen any reference to personal injury claims being mentioned within the National Framework as being something that prevents one availing themselves of any aspect of Continuing Healthcare, assessments or any other aspect to do with adult care.

Richard February 18, 2017 at 8:58 am

Indeed the implication being if you take out a PI case against the NHS (as our relative is) then you have to fund your medical care........aberrant nonesense

John February 15, 2017 at 12:35 pm

Hi all, I am new to this forum but have been an avid reader for a while now. Trust me, I know what you are all going through. My concern that I am looking for answers to relates to my son. My son is in a state of low awareness, and has been since his involvement in a catastrophic Road Traffic Accident in 2008. I am currently prevented from having any contact with my son who is now 25yrs of age. This is due to the involvement of 'The Establishment' who along with the State, and others, have taken control of my son's body, and refuse to hand it back to the care of his family. That's another story.
On this occasion I would like to ask whether anyone on here is aware of what, due to his condition and his primary health care needs, what type of funding is it, that my son should be in receipt of?
I am being informed by the local CCG, that due to my son having an on-going personal injury claim, he has to pay for all of his own therapists/therapies, all of his needed equipment, including wheelchairs, beds, shower trolley, tilt-table, and he pays for his own rent, etc.. They say this is due to my sons needs, being 'over and above' what they can provide him with, which is nonsense. My son is very easy to care for and has no 'specialist care needs', that cannot be carried out by his family and his support staff!

Also and never since his accident, has any of his paternal family members ever, been invited to attend at any care review meetings, or involved in any assessments, in fact, I do not recall him ever having any 'full NHS CHC funding assessments carried out ever! His first ever Social Worker allocated to him, was not until January of this year?

So my question today is: is it correct that my son should be made to pay for any aspect of his care or therapies, that is being suggested that he needs, which he doesn't, due to him having an on-going personal injury claim?
I was of the understanding that if you receive 100% NHS CHC funding, then all of your care needs and therapies, were include within this type of funding?
Why would a personal injury claim prevent my son being in receipt of what by law, he is entitled to be in receipt of? Any advice anyone may be able to provide me with regarding this would be greatly appreciated.

Richard February 16, 2017 at 8:06 am

https://www.gov.uk/government/publications/recovery-of-benefits-and-or-lump-sum-payments-and-nhs-charges-technical-guidance/recovery-of-benefits-and-lump-sum-payments-and-nhs-charges-technical-guidance

this may be of some help

MelanieP February 13, 2017 at 3:51 pm

We have just had a letter following Local Appeal Panel at end of Jan. They now say that the Multidisciplinary Team (MDT) meeting done in August is unsound - there was no Local Authority representation and the inference seems to be that they declined to be present and they have admitted that the use of "other guidance" was not correct. Despite extensive evidence submitted before and during the appeal process whilst they have reinstated Continuing Healthcare funding they are now wanting to convene yet another MDT. Stress is endless

Mrs Elizabeth Griggs February 12, 2017 at 4:19 pm

Would you please confirm that the 100% NHS Continuing Healthcare information is still applicable 2017. I found your web site very informative. Thank you.

ian Grimmett January 4, 2017 at 4:24 pm

Re crowd funding, yes I would support that.

Philip R Seurre January 4, 2017 at 3:21 pm

I attended an IRP in October last year. I had prepared a twelve page presentation giving details of serious irregularities, non compliance with the Framework and challenges to the levels for domains. I expected the panel to go through this in detail.
The chair was reluctant to discuss procedural irregularities and discussed them only after objections from me. There appears to be a reluctance to specifically criticise CCGs. Although the panel agreed with me on many issues their recommendation to the CCG was in very general terms.

Angela Sherman December 27, 2016 at 10:10 am

Brenda - it's usually about two weeks, so six weeks seems like an unacceptable wait for you. Contact the chair of the IRP or the relevant regional team: https://www.england.nhs.uk/ourwork/pe/healthcare/

e are taking about a huge number of pweople who are being disenfranchosed by the very people who are supposed to protect and support thwm. December 22, 2016 at 2:21 pm

We have just had a Local Resolution meeting following an Multidisciplinary Team (MDT)/Decision Support Tool (DST) in August and in reply to the letter sent from that (Continuing Healthcare (CHC) again refused) we have requested an IRP and we await the decision whether or not that will take place.
Just for general interest, our original MDT/DST should have been held in March 2016 as part of the National Framework (NF) process but was not held, totally against the NF.
An MDT/DST was eventually held in August and carried out WITHOUT any Local Authority assessment of the CHC application whatsoever, although the LA was present as part of the MDT/DST and only verbally took part including inappropriate and inaccurate remarks. Again, contrary to the NF.
So, no decision had been made by the LA, prior to or at the August MDT/DST as to whether or not the CHC applicant was within LA limits and therefore was able to legally be classed as being included and dealt with within that range of LA limits.
We had a local resolution meeting and requested the people who attended the MDT/DST be present.
The Local Authority refused and declined to attend with any representative whatsoever and, in fact had told the LA rep. from the August MDT/DST, not to answer any emails from us regarding the case and her appearance at the MDT/DST.
There are so many situations when the NF is totally ignored by the people who are supposed to be upholding the regulations as part of their "alleged" professional, person centred approach which is in reality a dream.
Time and time again one can bring them to task with evidence based information yet they continue in their own sweet way continually and habitually disregarding the law and making no attempt to admit failings. They do it with impunity as there is absolutely nobody who follows this national failure through.
They (CCG's and others) state so many times that they abide by the NF and other regulations and guidance, they seem to have convinced themselves that that is the case!!
It is astonishing that these situations throughout the country in relation to CHC applications, are allowed to continue without somebody in Parliament/Government to think it may be a good idea to get involved. Isn't that what they are there for?
Even though situations are brought to the attention of the CQC, members of Parliament and regularly appear in the press and media, absolutely nothing is done in the grand scheme of things, to bring these failing professional bodies to task. They are allowed to continue without any concerns in relation to the principles, core values of the system and process that they are supposed to uphold.
There are hundreds of people in sufferance in relation to this system and they are continually failed by the very people who are supposed to be there to protect and support them in their time of need.
They are judged as undeserving of some help at the end of their lives, which have been spent as being responsible, caring and helpful member of society.
What a grand gesture by the Authorities, to refuse to step up to the plate but finance other inconsequential causes that can be plucked out of the ether.
The fight continues.

M Carlisle December 22, 2016 at 1:12 pm

I wonder if Care To Be Different might see up a crowd funding system so we could all chip in to Class Action case in the courts?

Angela Sherman January 8, 2017 at 10:11 am

Nice idea. You would need to seek out a law firm specialising in class actions, as this is not something we can take on here.

Ricahrd January 8, 2017 at 7:29 am

Interesting but a double edged sword a successful class action would result in funding for those currently "in the system" but would almost certainly result in Government actually changing the NHS acts

Steve December 22, 2016 at 12:43 pm

My mother had a severe stroke 4 yr ago and fully funded by nhs when leaving the hospital to go in the nursing home, In August this year she was assessed by nhs who said she does not need the same nursing care which is not true . Was also asked if she had any assets we said property with she was renting out, they left saying it will be reviewed still not heard anything,

Angela Sherman December 27, 2016 at 3:00 pm

Sounds like an attempt to get your mother to pay, Steve. Appeal everything you believe to have been done incorrectly in the review.

Brenda December 22, 2016 at 10:47 am

It is now almost 6 weeks since the IRP and I have heard nothing
Please could you tell me who I should now contact
Many thanks
Brenda Gough