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:
“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).
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:
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.
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: