What to do if you’ve been excluded from the MDT Assessment?

Published 04/03/2020

Please note: This article was published prior to July 2022, and some information may be outdated.

Sandra Pike contacted us for help on the subject when she was not allowed to attend an MDT. Here’s what she asked us below:

Sandra’s situation

“Please could anyone advise me: I am very concerned that my local authority/CCG are blatantly and shockingly breaking National Framework guidelines. When a person is assessed for CHC Funding – this is what happens…

The nurse assessor only meets with patient and family rep to discuss/complete DST for which comments can be added to by the family.
The Assessor then goes away to an MDT meeting held at a later date with a social worker.
They then decide on the outcome.
The Social worker, in most cases would have NEVER met, let alone assessed the patient.
I myself have always been told (I have written and taped evidence to back this up) that, We are NOT allowed to attend – it is for professionals only!!!!
Last year after taking advice on here [CTBD] I refused to allow the MDT to take place without us. We declared that it would be null and void without us there – they then backed down and allowed us to attend – but sent all of the top guns to try to intimidate us.
I have carried out a FOI [Freedom of Information] request to this CCG asking, “How many MDTs take/took place with a family representative also present at the MDT?” – They first of all gave me false/incorrect info and published this online stating 100% attend. I complained – ended up going to the ICO.
The CCG then backed down and sent me an apology and said that they had made a mistake/misinterpreted my question. I am including their revised response [below]. It’s shocking!!! I have plenty of evidence written and taped showing that family reps are always told, “Not allowed to attend!”

The CCG published their response stating that the information provided is accurate as of 6 February 2020, and this is what they wrote:

“2019/20 – 2 (Family members/patient representatives are usually present at the MDT assessment of eligibility process only. The MDT meeting that follows is usually made up professionals only. However on 1 occasion in 2019/20, a request from family members/representatives to attend the MDT meeting was agreed and on another occasion one family member was invited to an MDT.”

We are grateful to Sandra for sharing her own experience and for wanting to spread the word as to this appalling state of affairs – evidencing that so few family members are being encouraged to participate in the assessment process.

What’s the issue?

The Multi-Disciplinary Team assessment (or ‘MDT’ for short) is a formal assessment to determine whether an individual is eligible for NHS Continuing Healthcare Funding – a free funded package of care – if they have a ‘primary healthcare need’ (ie the primary need for care is for health reasons, as opposed to social reasons).

Read our blog: Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

Getting a positive MDT recommendation for CHC Funding can result in the NHS paying for ALL of your relative’s assessed healthcare needs, including their accommodation. Based on figures provided by Which?, the average person may be paying around £45,000 a year in care fees. In certain areas, we estimate this cost could even be as much as £75,000 to £100,000 a year. Quite staggering sums!

According to paragraph 20 of the National Framework for NHS Continuing Healthcare Funding and NHS–funded Nursing Care (revised October 2018), the whole assessment process is designed “to ensure that the needs of individuals who might have a primary health need are properly assessed and addressed. These individuals are, by definition, some of the most vulnerable in our society and it is vital that systems deliver a person-centred approach to the wide variety of situations that NHS Continuing Healthcare encompasses. Strong system leadership is therefore critical to the successful implementation of this National Framework.”

So, why are family representatives being excluded from essential MDT assessments and being told they’re not allowed to attend?

Here’s what to do…

If you’ve been told you can’t attend the MDT, then ask why, and make a note of the answer!

This is a blatant abuse of process and you must complain.

The obvious implication is that the CCG assessors may have something to hide, or gain, by you not being there.

If you, or your relative’s representative, are not in attendance at the MDT, how can you be sure that the assessment has been carried out diligently, fairly and robustly? The NHS’s ‘person-centric’ approach is supposed to promote complete transparency.

Being excluded from the assessment process is clearly contrary to the core values and principles set out in the National Framework. It’s essence is to include the individual being assessed and their (family) representatives.

There is no restriction on who can act and represent your relative or act as their advocate.

According to the National Framework, the term ‘representative’ is intended to “include any friend, unpaid carer or family member who is supporting the individual in the process as well as anyone acting in a more formal capacity (e.g. welfare deputy or power of attorney, or an organisation representing the individual).”

In short, an individual can appoint anyone they chose to represent them, including a legally or medically qualified advocate such as a nurse, lawyer, barrister, their GP or other medical consultant etc. But, professionally qualified advocates will have no more or less standing than any other lay advocate.

Read our helpful blogs below if you’ve been told you can’t have an advocate:

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Attending an Assessment or Independent Review Appeal?

We’ve also copied some key paragraphs from the National Framework below so you can quote them to the CCG if this situation happens to you:

67. Individuals being assessed for NHS Continuing Healthcare are frequently facing significant changes in their life and therefore a positive experience of the assessment process is crucial. The process of assessment of eligibility and decision-making should be person-centred. This means placing the individual at the heart of the assessment and care-planning process.”

68. There are many elements to a person-centred approach, including:

a) ensuring that the individual and/or their representative is fully and directly involved in the assessment process;

b) taking full account of the individual’s own views and wishes, ensuring that their perspective is incorporated in the assessment process;

f) keeping the individual (and/or their representative) fully informed.

70. Assessments of eligibility for NHS Continuing Healthcare and NHS-funded Nursing Care should be organised so that the individual being assessed and their representative understand the process and receive advice and information that will maximise their ability to participate in the process in an informed way. Decisions and rationales that relate to eligibility should be transparent from the outset for individuals, carers, family and staff alike (refer to paragraphs 100, 159 – 161).

Also read Practice Guidance note 4 on page 98 of the National Framework for more information.

Conclusion

The crux of the National Framework is to involve the patient and their representatives throughout the assessment process. Therefore, by right, you should be invited to attend the MDT and not excluded.

We strongly recommend that you get involved in the assessment process. Otherwise, you won’t know how what went on and may forfeit the opportunity to have your say in support of your relative’s application for CHC funding.

When reviewing the comments posted on our Facebook page, or in response to our numerous blogs on the Care To Be Different website, you will learn from the shared experiences of other contributors who have faced MDT panels, and will clearly recognise why it’s vital to attend the MDT assessment.

Don’t miss this opportunity to give your input to the MDT panel, and be there to watch, oversee and contribute to the process.

If you don’t feel confident, or think you have the wherewithal to take on the MDT panel, then get help. But don’t leave it to the last minute! For personal help, visit our one-to-one page for one-stop advice and specialist advocacy representation at MDTs and appeals.

If you have been excluded from an MDT, give us the CCG’s reasons. Share your experience with others and leave a comment below…

Here are some other helpful blogs on the subject:

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

PART 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Tagged Categories: CHC funding, MDTs, NHS Continuing Healthcare

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9 Comments

Elizabeth Jeffries August 7, 2021 at 3:46 pm

I was not even informed about the MDT until after it happened and only then in response to a repeated request that my mum move closer to me (she currently lives 300 miles away). I am struggling to achieve mum's right to choose where to live (which I was and am struggling to achieve). So in an email conversation on this issue I had been told that the MDT had already taken place with the care home manager, clinical nursing specialist, mental health worker, and social care assessor. I was then told that my mum had been asked where she wanted to live, that she stated her current care home and she was assessed as having capacity. However, when I later asked her she had forgotten about coming to Manchester and it seems highly likely she was not given a choice. This exclusion from the MDT also followed on from not being consulted about the CHC assessment which I again discovered had happened in an email conversation. I was told that there was no checklist 'assessment' but there had been a checklist 'consideration' and when challenging the MDT on the CHC Framework subsequently received a copy of the checklist, and then challenged the scoring, and received a revised and different version. So thank you very much for creating this page and I will make a formal complaint about the CHC Checklist process and the MDT process. I seem to hit stumbling blocks with complaints as when I complained to the CCG about the discharge to assess placement I was told that as I don't have Power of Attorney the complaint cannot proceed without Informed consent which my mum does not have capacity to give (in my view).

Michelle Wetherall March 26, 2020 at 4:55 pm

Hi Jenny,
OMG! This particular CCG are blatantly disregarding the NF. Have you any emails/correspondence/voice mails that evidence the fact that they have denied you attending the MDT on those three occasions. I find this absolutely astonishing. The CHC nurse is operating beyond her remit. She has no right whatsoever to tell you that you have to ask her permission for a checklist to be completed. Don't be afraid of these people! I would be seeking to speak to the Care Home Manager and your father's GP about getting another checklist down NOW! I am guessing here......that you have the results of the previous three MDT/DST outcomes? You should have them! If not, then again this just unacceptable from your CCG.
My late father had Advanced Parkinson's disease and dementia and I fought a long battle to prove his case. I finally had his fees restored to my mum. It seems on the face of it, that this particular CCG/CHC are abusing the process because you don't live close by. There is plenty of help online with this website, & Age Concern to help you make an appeal. I would urge you to contact your local MP for a meeting too. Good Luck!

Ron March 26, 2020 at 2:25 am

How these people sleep at night is beyond me.

My experience was somewhat different. I went along to my wife's MDT/DST meeting. attended by her Community Psychiatric Nurse and, though a late arrival, her Domiciliary Care Manager. At the start the Nurse Assessor told the CPN that she was not a member of the MDT. The MDT, he stated consisted of himself and the social worker, who at that point was not present. |A social worker is coming, he said but we'll make a start. One domain was dealt with and during discussion of the second a lady arrived, whom the NA assumed was the SW. He gave her a paper to sign her name and job title which he took back without reading. Some time later he wished to refer to her, looked at the piece of paper and discovered that she was not the SW but the DCM. This, to the NA rendered the meeting non-quorate, since he obviously did not recognise the DCM as a member of the MDT.
He then turned to the CPN and said "OK you are a member of the MDT but you will have no say in the recommendation". At this point I demanded assurance that a SW was coming. The NA checked his correspondence and announced that Social Services had been invited to send a SW but had declined to attend. I aborted the meeting at that point.

Michelle Wetherall March 26, 2020 at 5:09 pm

Well done Ron!
Not the professional assessment that your wife is entitled to. I would follow up this with a written to complaint to your CHC/CCG about the shambolic MDT. You don't say whether this was a first MDT/DST or a review? Either way you need to have written evidence as you go through this process. Make sure they acknowledge your complaint! If this is the start of the process, then expect more of this incompetence. Be on your guard!
Good Luck!

Jenny March 20, 2020 at 7:29 pm

I have had my father with advanced Parkinsons disease assessed 3 times for CHC funding and each time I have been told that I can't attend the MDT meeting as it's just for professionals. I live in North Somerset and have failed to get CHC funding each time despite my father being unable to walk, choking twice in hospital and needing an emergency team and hallucinating on a regular basis usually because he is so vulnerable to dehydration and needs feeding and hydrating at these times which can take several hours to get rehydrated. He was also regularly trying to get out of his chair and has fallen as a result. This situation has not changed and yet the CHC nurse told me that I needed to phone her next time before asking for an assessment and she will decide whether I can apply as she said they didn't want to waste time doing the assessment if he hadn't deteriorated significantly. His current nursing home fees are around £72,000 per year and his house won't last too long at this rate.

Care to be Different March 24, 2020 at 8:30 am

Hi Jenny - this is completely untoward - there is no way that you should have been excluded from the MDT. Please feel free to call us if you would like to chat this through with one of our specialist advisors 0161 979 0430 Kind regards

Peter McGoohan March 20, 2020 at 12:07 pm

My name is Peter McGoohan and my wife and myself have Lasting Power of Attorney for our eldest daughter Anne who was unfortunate to have caught a serious menigitis infection when 8 weeks old in 1972. As a result she had repated nuero surgery as an infant that left her with severe mental and physical disabilities. She a young age Anne has been funded most of her life under Primary Care Funding by our local soicla services deparment at Enfield Council.
In 2016 the local council's Social Care |Department advised us ro apply for Continuing Health Care Funding. On 3 occasions since then ], we have completed all the parerwork we were asked to complete along with her Social Care worker and her Pyschiatric Nurse from the Council. Anne has 24/7 care in a flat with carers that we employ under direct payments from the Council.

In February 2020 we met for the very first time with a care managed from the CCG, that both of us found to be a very assertive person. Up until that meeting we had nor received any form of booklets about the way the change from direct paymenst to CHC funding on how it would would move forward or other related issues.
In the interim we heard from parents and others who had responsibility for the care of disabled family members. In some way these parenst seem to say that they regretted having to make this change to CHC from Council Direct Payments,for some of the follwoing reasons.
1. The monthly funding to pay carers wages did not always come in on the date agreed in order to pay carers their monthly salary on time
2. There were apparently recommendations coming to them to consider using a different care agency from what they already using.
3. Incidents where elderly people were seriously confused by the change of process to CHC
4. There seemed to be a situation where parents like urselves were unhappy by the way the reveiw process moved forward and certain difficulties along the way.

At our meeting I raised some of the above issues with the CHC care manager asking her to comment on any of the above. To our surprise she told us that once we had "embarked on applying for CHC funding" we did not have an option to stay with the Councils long standing Direct payments funding.
When I asked her to advise me of of the legal authority or the Act of Parliament and section that contained these CCG directions, the care manager simpy said that "it was within the CCG rules".
I was not satisfied with this off hand response and the meeting was terminated at this point. I raised my concerns immediately in a letter to the CCG Senior Manager Manager within our local area (Barnet) asking for the legal clarification of thier legal standing. To date I have had no ackowledgement or reply to my letter.
I have sought legal advice and I have been told that it is the responsibility for the CCG to give clear concise answers to legitimate concerns of parents or advocates in our position and that we are entitled to clear and concise wriiten answers from CCG mamagement to any reasonable requests we have raised with them. That has not happened to date.

I feel that we are being treated with the total lack of respect when our only main concern is the correct financial support andf care support that our daughter has have enjoyed from our local over the last decade.
It sounds if we are not the only family with feel that they are not been treated fin a way we consider fairly under the present CHC process but how on earth can we now move forward.

Rosalind March 12, 2020 at 6:16 am

Write a formal letter, asking for the meeting date to be changed. Follow it up with phone calls. If they don't change it, write a formal letter of complaint, copying it to the Chief Executive.

mrs d m clarke March 10, 2020 at 2:31 am

Please can you help. I have just been told I have a review MDT meeting in 3 weeks time due to having an assessment last week where the 2 nurses who came decided previous reviews were completed incorrectly and as a result of this they have decided my health care has altered. On what I do not know as they both sat with computers, didn't give us the normal paperwork to follow the guideline questions they asked us, therefore we couldn't argue on anything as to be honest we didn't even know what they was looking for in the answers. We felt that prior to them sitting down in our house they had already made their mind up that they was going to make sure they wanted to save money on my care. The MDT meeting that has now been arranged, I obviously want and need to attend this (these people haven't a clue about my health and if anything it has got worse over the last 5 years and not better) but unfortunately that day is not suitable for me. Am I within my rights to ask for the date to be altered to the following week or will they just go ahead with the meeting and without me be able to pull my CHC package away from me?