Preparing for an MDT. We have received many comments on our Facebook page recently following a post by a contributor who said that her mum is soon to be assessed for NHS Continuing Healthcare funding (known colloquially as CHC). She goes on to describe her mother’s admission to hospital for surgery and her other conditions, namely Parkinson’s and osteoporosis, dementia and confusion. She is optimistic that her mother will receive CHC as a result of the forthcoming assessment.
Our contributor says that she has widely read up on CHC and believes that her mother will be found eligible for CHC funding, but is not unrealistic to the challenges of the process where she says, “anything can happen”. She goes on to ask whether it is preferable for her to be present or not at the CHC assessment, when it is being carried out.
Thank you to our contributor and all those who posted a reply on our Facebook page, in response. These comments raise some useful points.
Understanding the assessments
Firstly, there are 2 assessments. The first is the Checklist assessment – a screening tool to see if the applicant will pass on to the second stage – the full assessment – which is carried out by the NHS Clinical Commissioning Group’s (CCG) Multi-Disciplinary Team panel (MDT).
Understanding the Checklist Assessment
Can the NHS refuse to carry out an initial Checklist?
The MDT is comprised of at least 2 professionals from different healthcare professions (usually including one healthcare and one social care professional) who are knowledgeable about the individual’s health and social care needs, and where possible, have been recently involved in their assessment, treatment or care, and who must be trained in the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care so that they have the relevant skills and knowledge to carry out the assessment. The National Framework sets out the rules and guidance to be followed at assessments.
The appointed MDT representatives must be trained and be fully conversant and cognisant of the workings of the National Framework (all 167 pages) in order to fulfil their obligations and conduct fair and robust assessments of a patient’s eligibility for CHC. Sadly, contrary to the requirements of the National Framework, we hear that many appointed representatives haven’t had sufficient training in the National Framework or don’t fully understand it. Poor assessments will inevitably lead to poor outcomes for families and CCGs rejecting some perfectly proper applications for CHC funding.
As some of our readers have already commented in response to this Facebook post, and in answer to the contributor’s question – it is VITAL that you attend both the Checklist assessment and the MDT. Otherwise you have no way of knowing what was said or how the meeting was conducted, who represented the CCG or what their professional qualifications or what prior involvement they have had in your relative’s care. There will be no way of knowing if your relatives healthcare needs were accurately and robustly assessed?
You simply have to be there! If you can’t make the date, see if you can adjourn the assessment to a more convenient time.
Take someone with you for support
Take someone with you to the meeting to take notes. It can be emotional and emotive, especially as you will be discussing your loved one’s complex and challenging care needs.
There is too much to absorb if going alone. You might miss out on important points you want to make. Another pair of eyes and ears is always useful if you can have someone responsible to assist you.
You know your relative’s needs and can therefore correct any misunderstandings or misinformation the CCG’s assessors might have got in this short window of assessment. If you’re not at the MDT, you cannot contribute as easily.
Don’t forget, you are also entitled to have a professional advocate to represent you at the MDT.
Read our blog: Can The MDT Panel Refuse To Proceed If I Have An Advocate?
The CCG should give you reasonable advance notice of the MDT assessment so that you (and any appointed representative) can attend. If they do not then you could have grounds for an appeal. The point is you really need attend the MDT.
But just being there is not good enough. You have to have an in-depth knowledge of the National Framework and its guidance to understand how the assessment process works, what the MDT are looking for when assessing eligibility and how to spot mistakes. Turning up to an MDT without proper advance preparation is not necessarily going to make a difference.
Take time to research the subject well
Luckily, our Care To Be Different website has a wealth of free information to help you at every stage of the process. You can also buy our helpful book “How To Get The NHS To Pay For Care” available as a paperback or PDF download. Otherwise, call one of our Specialist Advice Helplines and speak to an experienced CHC nurse or Case Manager.
We know that battling the CCG for CHC funding is never a foregone conclusion.
Like so many other families, you may assume that you relative will automatically qualify due to their needs being so great. This may be correct – but sadly, most families are in for a big shock.
You may think you know the National Framework well and that you will be able go at it alone and see off the MDT assessors but make no mistake, the bar to obtaining CHC is set very high.
This is a big challenge
The CCG won’t just roll over and award funding. They will fight for every penny to protect budgets, however obvious your relative’s qualification for CHC may appear.
Collate as much evidence as you can and prepare yourself for a battle. This is far more time-consuming and complex than it sounds. Then there is the challenge of how to best present your information in a coherent manner. This is to make your best points. Irrelevancies can side-track you and may undermine your relative’s application for CHC as this stressful and emotional time. At an assessment you are arguing for your relative’s funding and the stakes are high. Respondents in the midst of their application for CHC have said, “the paperwork is mind blowing…”, “dunno where to start, I’m not ready for this meeting, by a long shot”, “…I am fuming, so how does one stay calm?”, “… a long, long journey ahead, I’m afraid”, “It’s gruesome…”
Yes, you have to make the most of the MDT and absolutely give it your best shot.
The CCG assessors, of course, have a huge advantage; both trained and practised in using the National Framework and the assessment tools.
The National Framework is largely designed to assist NHS assessors, rather than members of the public with a relative in need of care. Unfortunately, not all CHC assessors understand the assessment process themselves or apply it correctly. That is why you (and your advocate) need to attend, if you are going to be of any help to your relative.
“It’s a full time job – to have any chance of getting full funding – you need to prepare, prepare and prepare – you must know the guidance, regulations and law inside out and stand your ground..”
Research as much as you can
Don’t be afraid to seek help as this can save you a lot of time and frustration. You will find the appeal process slow and stressful not to mention the impact this will have on hard-earned savings paying for care.
It can even mean having to sell your relative’s home whilst the appeal process trudges forward slowly to a final conclusion. This can go on for several years and cause many sleepless nights.
You may not succeed at the MDT but you can certainly help your chances by preparing well for it.
Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
If you need assistance or guidance, the common mistake is to leave it until the last minute to seek help. You are entitled to ask a professional advocate to represent you. Most do get far better outcomes. They’re now arguing from strength on a level playing field and the CCG assessors will be more wary to carry out more robust and fair assessments.
No advocate, however skilled, can argue for healthcare needs where they simply don’t exist. Give them as much evidence as you can, in advance. They will then be able to advise you on your chances of success.
Preparing for an MDT properly takes time, and realistically, you can’t expect an expert to pull out the stops and absorb all the information for a robust assessment if you contact them at short notice on the day of your MDT! Early preparation is essential.
Summary:
- We strongly recommend that you attend any assessment.
- It’s a good idea to take someone with you.
- Turning up is insufficient on its own, instead do your research beforehand.
- Read as much as you can.
- Don’t be afraid to ask for help, where necessary.
- Don’t have the wool pulled over your eyes. Get professional advocacy support to maximise your chances of success.
- Failure to get it right could see your relative’s savings and assets eroded to pay for care fees.
Here’s a selection of further blogs to help you read around the subject when preparing for your MDT:
Preparing for the Multi-Disciplinary Team Assessment
What Happens At The Multi-Disciplinary Team Meeting?
Don’t let the Decision Support Tool become a ‘tick box’ exercise
What Is The Role Of The MDT Coordinator?
Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls
What to expect when you attend a Continuing Care assessment
Attending the Multi-Disciplinary Team meeting – some useful guidance
Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
Post a reply below with your experiences of MDTs to help others going through the same thing…
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Thank you CTBD for continuing to support families with these excellent articles. I always read them ever since I fought and won at IRP for my late father.
You will know that I have submitted lots of replies in an effort to share my experience of CHC and those administering it.
It’s now been 2 years since restitution was made after the death of my father and I’m still finding it difficult to comprehend and cope with the overwhelming impact the process had on my mental and physical health. From the depths of despair for years to the euphoria I felt when it was all over.
I sympathise with Chris and understand how he felt demoralised, angry and exasperated. The process of CHC is creating health and mental health issues not only for those applying for it, but for those acting for them. This cannot be right?
I have been approached and asked to provide help to others appealing the process and whilst I have recently shared my experience with an ex colleague, I’m very wary at getting too involved to the detriment of my own mental health. I vividly remember the hundreds and hundreds of hours that I spent each week researching the law and the NF and then not being able to sleep because I felt totally consumed by the information. Quite often I would get up at 4am, coffee in hand, computer screen on!
My sheer determination to prove my dad had a PHN became my sole focus.
I have at least 4 arch lever folders full of paperwork relating to CHC. This is how complicated CCGs make it for applicants.
Unless you have excessive free time and have a background in analysis and attention to detail, then you will struggle.
Preparation is paramount before any assessment/review. You have to know your rights and stand firm. Whilst the assessors from CHC appear on the face of it to be sympathetic, they really don’t care about your relative or you! In our case none of those assessing my father knew him or his health needs. Incorrect, missing reports/care home notes that were often illegible and falsified were a gift to them as they didn’t question any of it but merely accepted it, passed it to CCG who simply ratified the ineligible decision in a matter of 2 days!
Yet, the appeal process can many many years!!
I think my advice to those just setting out in this journey is to know that it is possible to win an appeal without specialist help but to do so be prepared for the monumental task ahead of you, AND know that it could have a detrimental impact on your own health and everyday life.
Good Luck!
I hope you have better luck than I did trying to get CHC for my Father.
A most exasperating process , misled and felt absolutely demoralised by the whole process.
I felt it was an utter waste of time , Social Services and NHS seemed to have an agenda , very pleasant and deliberately hinting at a positive outcome that turned during the process.
Do not be taken in , very disappointed and furious at the way my Father has been treated.
The only occasion I have personally heard of anyone getting CHC is if they are at end of life and it would only have been needed to be paid for a week or two.
Repeat do not be taken in , do not give them an inch and treat them as if you are dealing with criminals.If you have a pleasant nature and like to see the positive in people get rid of that attitude immediately , you will be taken advantage of.
My husband was awarded CHC in 2014 after a severe stroke that left him with right side paralysis, double incontinence, a peg feeding tube fitted,, aphasia & cognition problems. He couldn’t communicate in any form. In 2018 after 4 years CHC decided he no longer qualified for funding. His condition hadn’t improved one iota. We fought through the system getting refused at each hurdle, finally ending up with the IRP which had to take place remotely (6 people on different phones) due to COVID rules. The decision was overturned and funding reinstated. Fight for your rights – it’s hard work & time consuming. My husband has recently passed away after almost 8 years of care in a Nursing home all funded by NHS Continuing Care. We are so pleased we fought for what he deserved. Get as much info as you can and read he book that Caretobebdifferent offer. Keep fighting
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order of assessments 1 3 2
PUPOC
assessment appeal 28/6/2014 assessment
to
23/10/2014
date of assessment 1/8/2013 11/04/14 22/7/2016 24/10/2014
behaviour L M No needs H
cognition S S H S
communication H M L H
This is my late Mother’s history. A short period (Previously Unassessed Period Of Care) was missed and done at a later date.
It is staggeringly obvious that the scoring has been retrospectively lowered quite deliberately to avoid paying up. Despite the blatancy, NHS England went along with it, as did the Ombudsman. They absolutely know that a claim for <£12000 wouldn't be worth a legal challenge (and probably much larger claims too) – thus they are free to distort their assessments as they see fit. They all refused to comment specifically on the 'Elephant in the Room' as I referred to it.