When attending a Multi-Disciplinary Team assessment (MDT), families often find the task quite overwhelming, not really knowing what to expect, what they can say and can’t say, or what they should or shouldn’t say, or even how to present their case coherently to argue for NHS Continuing Healthcare Funding (CHC). Coupled with this is the sheer anxiety and emotional effort required, to calmly yet passionately, convey what you want to say without it turning into a ‘rant’.
The MDT is the first real opportunity to present your case to the NHS, hear what their assessors have to say, and to argue for your relative’s eligibility for CHCF.
Naturally, families want to do their best to try and cover all the issues and seek funding where the individual is potentially eligible. But, collating the evidence, understanding the medical and care home records, abbreviations and medical jargon, can be confusing and can often be challenging even for the most articulate.
For example, under the ‘Medication’ Domain, certain administered anti-psychotic medication may be sufficient evidence when coupled with other health needs to suggest a high score. But if you don’t know or understand the nature and reason for the medication, or how it is administered, or its potential side effects and its impact on the other Care Domains – then you might be missing out on vital clues that could make the difference between getting CHC funding or not. A skilled advocate should readily pick up these clues. So, attending the MDT assessment alone may not achieve the best outcome or be quite as straightforward as the NHS may have you believe. You really have to know and understand what you are looking for. If you want to make a real ‘fist of it’ and present your case on level terms with the MDT assessors consider getting advocacy support. Read on…
Beware: it can be a minefield. The NHS National Framework suggests it is not necessary to have an advocate as it is designed to be comprehensive and user friendly. We do not agree. The current Framework consists of 140 pages, and frankly, even some of the MDT assessors do not fully understand it or have had sufficient training on it. It is also said that your chances of success can vary widely across the country depending on where you live – as often described as the ‘postcode lottery’. The discrepancies and inconsistencies in getting funding were highlighted by the House of Commons Committee of Public Accounts (NHS continuing healthcare funding) Thirteenth Report of Session 2017-19.
So, can I get help with advocacy?
In short, the answer is yes! And whilst you can deal with your own advocacy if you wish, you may feel overwhelmed and understandably out of your depth as the relative’s needs are being assessed from a clinical perspective, and not an emotional or biased perspective.
Who can I choose to be my advocate?
Consider Practice Guidance 57 (page 145) of The National Framework for NHS Continuing Healthcare – NHS-Funded Nursing Care October 2018 which is due to come into effect on 1st October this year. The pending 2018 NHS Framework (which provides broadly similar guidance to Practice Guidance Note 9 of the 2012 NHS Framework) states that “any individual is entitled to nominate a person to represent their views or speak on their behalf and this could be a family member, friend or peer, a local advocacy service or someone independent who is willing to undertake an advocacy role”.
So, basically anyone can act as an advocate.
Advocacy services are not just for those with mental health issues, as seems to be the emphasis in the NHS National Framework. Local Authorities and Clinical Commissioning Groups can provide advocacy services in their locality, but obviously not where there is a conflict of interest.
Can the MDT meeting refuse to proceed if I bring an advocate along?
No, they can’t! The NHS National Framework actually permits it! So, they cannot object as you are entitled to have representation if you want.
We have heard stories where the MDT assessors have stopped an MDT and refused to proceed when faced with clinical nurses or legal representation on behalf of the individual. This is wrong! They have no grounds to object. If they do object, the implication is that the assessors are out of their depth and will be exposed as being unfamiliar with the whole assessment process. The MDT are supposed to conduct an independent and objective review, so what have they to lose by you bringing along an advocate? Tell them that you are fully entitled to have someone present your case for you.
Our TIP: whatever the objection – be it that the advocate doesn’t have capacity (eg a Power of Attorney), or that they have a legal or clinical background – just tell the MDT that they are your appointed ‘advocate’ – you do not need to go into any more detail. That should suffice to quell any objections raised.
Quote: Practice Guidance 58 indicates that “individuals are free to choose whether they wish to have an advocate present and to choose who the advocate is.” This includes legal representation. Legally qualified representatives have the same standing as any other advocate nominated.
So stand your ground if the MDT object and threaten to adjourn the assessment because you are represented by a clinical nurse or legal advocate who specialises in this field of CHC funding. You are absolutely entitled to have an advocate representative, and this could potentially make all the difference between getting CHC funding or not – and the difference in paying or saving many thousands of pounds a month.
If I can do this myself, so why get an advocate?
Yes, we have said that you can undertake advocacy yourself, but you really have to know your stuff, be on your game and be very familiar with the individual’s needs (and the NHS National Framework!) to give yourself the best shot here. Remember:
- You will be facing a Multi-Disciplinary Team consisting of various healthcare professionals. They have a huge advantage, as they should (at least in theory anyway) be very familiar with the NHS National Framework, the 12 Care Domains in the Decision Support Tool and the descriptors provided.
- Scoring across the 12 Domains is highly subjective, and you may feel that the odds seem stacked against you – especially if the MDT assessors have a pre-determined outcome in mind and are inflexible in their approach.
- Some assessors, for whatever reason, seem to adopt a ‘hostile’, almost adversarial approach, and can be dismissive of what families have to contribute about their relative’s health needs.
- Some assessors may even ignore or try to dismiss your contributions to the meeting – even though they are supposed to be encouraging you to participate in the process!
- Some assessors won’t entertain any information that isn’t in black and white in the care home or medical records (and we know how sketchy they can often be); almost to the point of accusing the family of making up their relative’s health needs to improve the scoring.
Therefore, however bullish or confident you are feeling – a good advocate who is familiar with this complicated funding arena, can tip the case in your favour whilst also taking the emotional stress on their shoulders.
Alternatively, you can, of course, seek professional advice, and there are only a limited number of companies who act nationwide with sufficiently trained staff and/or clinical expertise in this highly specialised area. [Look at our Need one-to-one help page]. However, be guided by your advocate and be realistic too. Don’t expect an advocate to argue until ‘they’re blue in the face’ if there simply isn’t a case for eligibility. Not everyone is eligible for CHC funding.
Don’t forget that even with an advocate alongside you to argue your case, you still have an important role to play at the MDT. You have the advantage of knowing your relative best and can contribute by providing any missing information, and pointing out any misunderstandings, oversights or obvious errors that the MDT assessors have made.
Ultimately it is your choice whether you have an advocate or not. There will usually be a cost of paying for a professional advocacy service, but you may feel that this is money well spent, and especially so, if the advocate achieves a successful outcome. It could potentially save an estimated average of £40,000 to £75,000 per annum in care home fees.