An exclusive Q & A interview with an IRP Chair - a rare insight into conducting your appeal and knowing what to expect on the day

Published 09/04/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

Has your relative’s claim for NHS Continuing Healthcare Funding (CHC) been rejected by the Clinical Commissioning Group at a Local Resolution Panel? If so, you only have 6 months to prepare your case for a final appeal at an Independent Review Panel (IRP) conducted by NHS England. This is your last real chance of securing CHC for your relative. Your success or failure will depend on your preparation of the appeal submissions and how you present the facts in support of your case. A successful outcome could mean that your relative’s healthcare needs are paid in full, free of charge by the NHS; or reimbursed, if claiming restitution for wrongly paid care fees, retrospectively.

Care To Be Different are privileged to be able to offer our readers an exclusive interview with an Independent Review Panel Chair, who shares some handy tips to help you through the appeal process. We believe that this interview is the first of its kind and we hope that the insights provided will give you a better understanding of what goes on, and what is expected of you at an IRP.

Q1. What makes a good written appeal submission?

Chair: Don’t include previous case law for example Pointon, Coughlan or Grogan (the leading cases) – the IRP will know them and the National Framework is considered by leading legal authorities to be compliant with them.

Identify any health care needs that have not previously been properly considered. Many people identify failings of the NHS to follow due process, in their appeal. These failures are unlikely to change whether a person is eligible or not. Eligibility is based purely on health care needs. Your appeal needs to focus on the actual care.

Keep to the relevant facts. Don’t be tempted to exaggerate the health care needs. Keep your evidence relevant to the period of time that is being reviewed. This can be very difficult when you are dealing with a period of time that was some years ago. Make your points about the levels of need that you disagree with – look at the descriptions next to the levels of need and decide which one is the ‘best fit’.

A good set of four key indicators is a must. This is the hardest part of the assessment and is often not done well. Essentially, all you need to do is consider all the needs from the Care Domains and how they impact on one another – to impact on the nature, intensity, complexity or unpredictability of the care required. In practice it is quite hard to get right and is generally what most applicants fail to consider.

Q2. How long does the appeal submission need to be?

Chair: There is no required length. I’ve seen appeal submissions that are 100 pages long written by solicitors! You can just say that you disagree with the levels of need and identify which ones, and give a few paragraphs to explain why, but don’t forget to say that you don’t think that the four key indicators were properly considered.

Q3. What are your top tips when preparing an appeal?

Chair: Make sure you used any prescribed form devised by your CCG – some use a document called a Notice of Dissatisfaction; others just request an appeal in writing.

Keep to the facts. If you have documentary evidence to back up your facts, then refer to it giving dates and page references and ensure that the CCG has a copy.

Focus on the care needs, identify what carers needed to do each day and what made it more difficult or time consuming for carers to meet those needs.

Identify if these things have not been properly considered by the NHS.

Q4. Do you have any quick tips for summarising the 4 key indicators?

Chair: Read through the key indicators and familiarise yourself with the kind of things that should or could be considered.

Make sure that you focus on all the needs and how they impact on one another.

Make sure that they show how the needs manifested themselves practically.

The four key indicators should explain what the carers need to do for the person each day, how much time and how much difficulty was involved.

Use the 12 Care Domains to guide you through the sorts of things that need to be included.

Make sure that you add a conclusion to each of the indicators to indicate whether or not you think that indicator was met.

Q5. Why is good preparation for the IRP paramount?

Chair: You get one chance to appeal to the CCG (this is called a Local Review), and then one chance to appeal to NHS England (this is called an Independent Review Panel). The people hearing your appeal can only go on the evidence before them. If you fail to identify the relevant issues at the appeal stages, it is less likely that you will get the right outcome.

Q6. What documents do I need to send to the IRP in advance of the appeal and what should/shouldn’t be included in it?

Chair: Generally, the CCG requests on your behalf any records from the care home, the GP, the local hospital and any specialists involved in the care. Sometimes, only one hospital gets contacted, so check that all the hospitals that were involved have been contacted. Sometimes the GP or care home might have changed, so make sure that the records from the old and the new establishment have been obtained.

Sometimes family members keep their own diary – you might want to include this; if there is a lot of information, highlight what you think is relevant.

If you have any additional records, you can add these to the evidence file in advance.

You should only include evidence relevant to the care needs that occurred during the time period being considered. There is a general rule at the Independent Review Panel that no new evidence can be given on the day of the IRP. This is because all the parties need to be able to read and check the evidence and there is not time on the day. In practice you might only see the file one or two weeks before the IRP, so this might not give you time to add in the evidence you want. If this occurs, you can ask for the IRP to be postponed.

Q7. Why is it essential to keep your arguments succinct?

Chair: The IRP has a lot of evidence to read. Often at IRP the bundle is over 1,000 pages long. The key points get lost if you put in too much information.

Q8. Does the IRP ever make their minds up in advance and predetermine the outcome even before the meeting takes place?

Chair: In advance of the IRP, the panel members will all have been sent a copy of the case file to read and will have prepared by reading the file and recording the key issues and key evidence. On the day of the IRP, you will be asked questions by the IRP to help them to fill in any blanks. The IRP members will also ask the CCG questions. The IRP continue to debate the evidence in the closed part of their meeting; this is after you and the CCG members have left. This part of the meeting will last 2-3 hours. The IRP will make its conclusions based on the evidence from the file and from the verbal evidence given by you and the CCG. The IRP consists of 3 independent people. They do not discuss the case between them before the IRP. The decision is never made beforehand. In the vast majority of cases, the decision is made on the day, though in some cases the IRP might need to defer their decision whilst they obtain a key document or specialist advice.

Q9. How much of the case has the IRP read in advance of the hearing?

Chair: The IRP will read all the records on the file. They usually get the file one week before the IRP. By the time the case is discussed at IRP, the panel will have a good grasp of the care needs and will only need to ask supplementary questions. If the case file is scant or poorly documented, the IRP will ask you more questions to fill in any gaps in their knowledge. This is when it is very helpful to have family members present.

Q10. Who sits on the IRP panel and what is their background?

Chair: The IRP consists of 3 members:

a representative from the social services team at the Local Authority; they will know about CHC and what care the LA is legally able to fund
a representative from the NHS, often a general nurse, mental health nurse or continuing health care worker; they will know about CHC and how various health conditions will impact on the care needs
a lay person to chair the meeting; they will know about CHC and will have a background in chairing meetings

Each of the 3 members has a voting right in respect of the eligibility decision, though generally the decision is unanimously made. If it is 2:1 this will be recorded in the IRP report with the reasons why the dissenter disagrees.

Q11. Who else can be present?

Chair: A clinical adviser is sometimes present to ensure that the IRP considers fully the impact of any specialist nursing or mental health requirements.

A note taker is usually in attendance to make a written record of the meeting.

The parties will have been invited to attend; this is a representative from the CCG and the family.

Q12. Where does it take place – describe the room layout – where do the parties sit?

Chair: The IRP can take place in any meeting or conference room deemed appropriate by NHS England. It is usually within an NHS owned building or a hotel meeting room. Usually the tables are set out in a square with the panel sitting opposite the CCG and family.

Q13. How long does the IRP usually take?

Chair: Expect to be at the IRP for 2-3 hours, though the Panel will stay for 2-3 hours longer, after the family and CCG have gone.

Q14. What is the format for the IRP?

– e.g. who speaks first, and when does the family get their say, and have the right to challenge the CCG’s representative comments, etc.?

Chair: Normally the IRP is split into 2 halves:

1) The process – this is where any representations are made about the process that has been undertaken by the CCG. The Chair will ask the family about their complaints and ask the CCG to explain what, if anything, went wrong and why.

2) The eligibility – this is where the Care Domains are discussed. The IRP will refer to the levels of need selected in the Decision Support Tool and Local Review. The IRP will ask which levels each party considers is appropriate, and why, and will ask appropriate questions about the health care needs. Then the four key indicators are discussed. The family and the CCG will be asked to present their views on each of the four key indicators.

Throughout, the IRP the Chair will direct one party, then the other to speak. The Chair will prompt and ask the family questions based on the written appeal and the facts that are relevant to be discussed. The panel members might ask you questions as well. The questions are normally related to the health of your family member, so you are likely to know the answer, but don’t worry if you don’t! If you don’t agree with what the CCG says, you can say so in the IRP. The IRP will be well used to weighing up the evidence, and if the evidence is against the CCG, the IRP will say so in their report.

Try to give your evidence calmly and without making it personal against an individual.

Q15. How formal is the IRP?

Chair: It’s just a standard meeting. If you are used to meetings, this is no different. If you are not used to meetings, you might feel a bit nervous at first. Remember the panel are just ordinary people. It is the job of the panel to make you feel at ease.

Q16. How should I dress for the IRP?

Chair: Dress however you feel comfortable – there is no code. It can be useful to wear a cardigan or jacket that you can take off or put on if you feel too hot or cold.

Q17. What should families say/not say on the day?

Chair: Keep to the relevant facts, answer any questions truthfully and as fully as you are able. To reiterate, don’t launch a personal attack on specific individuals.

Q18. How do the family address the IRP Chair and other panel members?

Chair: Either as ‘The CCG’ or by their name.

Q19. What is the correct tone of language to be used at the meeting?

Chair: Formal but relaxed. Take your lead from the Chair.

Q20. How adversarial is the Panel meeting – what do you say if you don’t agree with the CCG representative’s comments/arguments – and when do you get your say?

Chair: Different chairs have different styles, and this can affect how formal the meeting feels. It should feel like a formal meeting. It is not as formal as a court or tribunal. Often, if a CCG has got things wrong, they will say so. If you disagree with the evidence that they give, wait till they have finished speaking, get the attention of the Chair and indicate that you would like to respond. A good Chair will be looking at your non-verbal responses and will invite you to respond if appropriate.

Q21. What things winds you up as Chair?

Chair: You can’t ruin your case. Give honest and full answers to the questions put to you. The Chair will guide you if you say too much or not enough. The panel will make their decisions based on all the evidence.

Q22. What is the advantage of having a family member in attendance?

Chair: Many advocates don’t have enough experience or understanding of CHC and approach it badly. I would rather a family member present their case themselves as they are much better able to answer questions about their loved one.

Q23. At what stage do the panel reach their decision e.g. is this in a private meeting after the parties have left the IRP?

Chair: After the open meeting has ended, usually around lunch time, the CCG representative and family members leave. The panel breaks for lunch and on return will go through all the findings from the IRP. They will discuss and make comments about the process and will debate and select new levels of need in the Domains. They will then revise the four key indicators. The decision is made at the end of the meeting.

Q24. Who types up the decision and how long does it usually take before the family receive the outcome decision?

Chair: The note taker types the minutes in draft form. The Chair is responsible for revising and checking them. The Panel members will be sent the final draft to comment upon. The report is then sent to the CHC lead and is signed off. It takes 6-8 weeks before you will receive a copy of the report.

Thank you…

CTBD would like to thank the Chair for their insights into an IRP.

Good luck with yours!

Remember, you don’t have to fight this battle alone and are entitled to seek advocacy support to help you with your appeal. But, early preparation is paramount to success. If you need specialist help, visit our one-to-one page.

Visit our website for lots more free information and resources to help with your appeal. In the meantime, here’s a selection of some further reading around the subject that you will find helpful.

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

Relief as 6 Month Time Limit To Appeal MDT Decision Is Reinstated

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Know your rights – Appealing the CCG’s refusal to grant CHC funding.

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision

Tagged Categories: Appeals and reviews, CHC funding, News and media, NHS Continuing Healthcare, Ready to appeal, Stories

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17 Comments

Paul September 21, 2021 at 10:01 am

I am confused. When submitting our mum's appeal the appeal forms says you you can appeal based on procedural grounds and health care needs grounds. This article suggests this is not true which is backed up by the local resolution meeting we attended recently where no one with a legal background was present. How can this be? What is the point of a National Framework if the NHS and Social Services are free to disregard or ignore any part they choose and why invite comments about the procedures from people in their appeal if these comments are to be ignored?

I understand it is a Framework, but as someone who has written many submissions for applicants and independent tribunals consideration when explaining decisions made by public bodies I'm shocked. This is especially the case given so much emphasis is placed in advice on how to prepare for your NHS CHC DMT and complete the DST by referencing the NHS CHC framework and what you should expect to happen during the process.

This article basically sends out the message the NHS CHC process is lawless and the NHS and social services can conduct themselves in whatever way they want without being held accountable. Surely the two should go hand in hand. Follow the correct procedures and you will identify the correct health care needs. Ignore there procedures and you invite a mess of ill informed, confused decisions and deliver an awful stressful experience to some of the most vulnerable people in society at as time when they need help and support the most, irrespective of what the final decision reached is. Sorry, whilst I appreciate the insight this article brings, I'm disgusted and horrified by what it reveals.

Michelle+Wetherall October 12, 2021 at 7:04 am

Hi Paul,
I read your submission with interest. I was successful at IRP back in 2019 after almost 3 years of appeal. I vividly remember the day of the IRP and was asked by the Chair what I wanted to focus upon during the hearing. I said the evidence of a PHN, knowing that I would be limited on time to speak. I didn’t waste precious time on outlining the failures in process and procedures that the family had to endure.
Whilst I understand your points, the IRP will not overturn a decision based solely on failed procedure. However frustrating this seems and the stress that it causes families, funding has to be based on the PHN of the applicant. Ethically it wouldn’t be right to award funding to someone who didn’t meet the criteria but was awarded it because the CCG failed to meet deadlines and or made errors in the administrate process.
It would be nigh impossible to prove that any administrative errors had been made to deliberately deny eligibility, but again I do understand the points you raise and sympathise.
Good Luck!

Care to be Different October 8, 2021 at 12:28 pm

Hi Paul
Thanks for your comments. The National Framework and the DST has been carefully considered by NHS lawyers and considered to be compliant with the law. So, if the DST has been completed using the full clinical evidence available and in sufficient detail, and has considered the care needs arising in terms of intensity, complexity and unpredictability, then it should give rise to a robust assessment. It is when the assessment has not been robust and details have been missed that the eligibility decision might have been incorrect. CHC funding will only be appropriate if the care needs dictate that the person is eligible. The IRP will look at the process and will make comments about it, but the process being flawed or poor in itself will not give rise to eligibility. You can appeal on ‘procedural grounds’ as it is likely that the process being poor or flawed will result in the CCG not having robustly considered the clinical material. For example, they did not have all the evidence to hand; they did not use the correct professionals to make the decision; they did not ask the family for their evidence.

The IRP will consider the process and comment on it. Where it has been lacking the IRP will invite the CCG to explain, and their report is likely to highlight where they felt the CCG needs to improve. The IRP looks at the clinical records again fully, and should consider all the needs fully in light of the 4 key characteristics. This resolves any process flaws that might have impacted on the robustness of the eligibility decision. The IRP cannot turn the clock back and redeem the CCG’s poor process, and no one will ever be awarded CHC when they do not have sufficient health care needs to warrant it.

Andy May 26, 2020 at 12:19 pm

"Make sure that you add a conclusion to each of the indicators to indicate whether or not you think that indicator was met." Sorry to drum on about this, but how can you conclude this based on what is in the National Framework? What is to stop others from coming to a different conclusion? While writing this I came across this on page 20 of the NF and wonder if it might help me with an answer: "determine whether the ‘quality’ or ‘quantity’ of care required is more than the limits of a local authority’s responsibilities, as set out in section 22(1) of the Care Act 201". Is the answer I need in this section 22(1)? Where do I find this?

Andy May 26, 2020 at 12:24 pm

I don't know how exact it is in defining the limits (about to read it), but I found section 22(1) of the Care Act 201 which sets out the limits of what nursing care a local authority can provide: http://www.legislation.gov.uk/ukpga/2014/23/notes/division/5/1/4/9

Diana April 27, 2020 at 9:23 am

Thank you Care To Be Different for this website and all the invaluable information it contains.

After a 7 year wait I recently attended an IRP for Retrospective CHC Funding which was denied. I would not advise going to the IRP alone. You are told the panel are not allowed to discuss legalities but I would advise taking someone who knows the process and can keep the informal chat on track (evidence based) and properly get these points across. My mother had qualified in 2013 and I then applied back to 2009 when she first went into care. She was not assessed for CHC at that time, she owned her own home and payments were deferred against her house by the Local Authority who had been supporting us caring for her in her own home until she became too volatile and unpredictable for us to manage. She had dementia. The CCG provided 6 large folders of evidence; home care, care home, LA and medical records and I was able to prepare a comprehensive 61 page statement that included comparative checklist DST assessments using this evidence. Firstly the CCG had claimed they had evidence that she had previously been assessed in 2011 and therefore we couldn't claim back to 2009. I tried to appeal this. When I received all the evidence a few weeks ahead of the IRP I saw that the 2011 checklist they had couldn't be relied upon as it was incomplete; 6 domains were missing and it was unsigned (the scores that were there matched those from 2013). Still the IRP refused to consider back to 2009 only to when the CCG had conducted their own retrospective DST. Where do I go next? Is the Ombudsman the only option? Has anyone had any success with this route?

Christine April 25, 2020 at 4:41 am

I attended an IRP on 13 September 2019, in relation to my mother. I’m still waiting for the outcome. Each month they are reminded but just come up with excuses of a backlog of reviews to attend to.
The appeal relates to one single year May 2015 to 2016 where CHC funding was deemed ineligible. My mother was CHC funded either side of this.
The only odd thing at the meeting was the note taker (whose email is our contact at NHS England) was taken ill after a few minutes and two other panel members took the notes. I’ve asked for the email of the chair, I have his name, but his email has not been forthcoming.
My Mum died on the 25 September 2019 it would just be fitting to have the resolved to bring closure.
I understand these are difficult times with Covid but my mothers case is well before it became an issue.

Michelle wetherall April 27, 2020 at 4:29 pm

Hello Christine,
Even without the current crisis, it seems to me that you have been waiting far too long for a decision following your IRP.
When you say they are reminded each month, who and how is this reminder being made?
Given the lengthy delay I would now be making a formal complaint in writing to NHS England about the delay and the lack of information or reasons for it. Send the letter signed for.
I would also use the email address of the coordinator for your IRP (ie: Notetaker) and copy in the complaint! Don't forget to tick the all important "read receipt" for your email.
This should hopefully trigger a response.
I would also copy in your local MP and ask he or she to follow up the failure to respond.
It simply isn't good enough to be left waiting without good reason.
Sadly, it's down to you to put the pressure on.
Good Luck!

Valerie Schofield April 24, 2020 at 7:16 pm

I am currently waiting for an IRP on behalf of my late mum.I am concerned that my mums needs were minimised by the original MDT panel, and the local resolution meeting repeated incorrect information. Following the Local Resolution Meeting, I requested some information in relation to my mum.When I recieved this I discovered that the information did not relate to my mum at all.The physical description was of someone else. I had always thought that there was something very wrong but couldn't quite put my finger on it.It seems that either my mum was not assessed or the NH S have been using a different patients records, I am shocked and upset,

Michelle wetherall April 27, 2020 at 4:59 pm

Hello Valerie,
I am so sorry to hear this and understand how shocked and upset you are.
I had the same happen to me, when I received the CCG file before our IRP took place. I suspect this happens a lot, but the volume of documents that are sent out from CCG's can be overwhelming for families to deal with and I guess lots of missed/inaccurate information is buried deep in the paperwork.
But you have quickly identified inaccuracies, which is really good.
You or your representative, needs to scrutinize all the documents that you believe don't appertain to your late mum
and the inaccuracies you have found. Document these in a complaint to the coordinator (NHS England) of your IRP.
You say you are waiting for an IRP. Have you been accepted for IRP? Either way, the information you now hold is absolutely crucial that the Chairman of your IRP receives for consideration.
You will need to have evidence to prove that the documents they have provided are not the documents appertaining to your mum. To be able to do this effectively you are going to need all your mother's care/GP notes to prove your case.
You will see from the latest CTBD IRP article, they are only interested in whether your mum has a PHN. It seems that you have very little chance of over turning a decision based on malpractice/administration etc.
Good Luck

Ian Mcclymont April 10, 2020 at 4:28 pm

Fabulous information guidance

Michelle Wetherall April 9, 2020 at 10:08 am

What a great article this is! Exactly what I have repeatedly said in previous posts. Focus all your efforts on the key indicators. Don’t waste time on due process. I’ve said before I was asked by the chair at IRP what I wanted to focus on and I said Key Indicators. The panel can not simply overturn a decision just because processes weren’t adhered to. Eligibility will always be on the nursing care that is required 24/7 to keep your relative safe and from deterioration.
This article is a true reflection of what took place at our IRP. So I urge all those going to IRP to try to put aside the differences they may have about the incompetence experienced as this will not change the outcome! The only way to change that outcome is to prove it through detailing your evidence set against those 4 characteristics. Its no different to an appeal in a court of law. You are detailing evidence that has been forgotten, overlooked or deliberately manipulated!
I spent at least 3 months at the beginning of 2018 working at least 2 hours a day, trawling through my late fathers care notes and applying it to the key indicators. It was hard work but it can be done, without instructing a specialist firm to help.
Thank you again CTBD for this important article. It will certainly help claimants to focus the right area for appeal.
I feel desperately sorry for families with loved ones in homes right now. Seeing the images of relatives standing at windows trying to communicate with
them is heartbreaking. Stay safe stay well and use this time to prepare that appeal!

Andy May 26, 2020 at 12:09 pm

Hi Michelle, I appreciate that the 4 Key characteristics are considered critical by the assessors, but I still don't see how eligibility can be proven with something so subjective. Following the LRP, he CCG have written unsubstantiated statements like "no identified intensity/unpredictability/complexity associated with a primary health need", but how much of each do you need for it to be associated with Primary Health Care? There is no definition of the required levels of each. This is why I keep coming back to Coughlin, as at least it offers a yardstick to measure against.