Sarah wrote to us to help spread the word about NHS Continuing Healthcare Funding, and to encourage other families to take up the challenge to get proper assessments done.
She told us about her battle to get her mother properly assessed at a Multi-Disciplinary Team meeting.
Her comments below highlight how important it is to be well-informed about NHS Continuing Healthcare Funding, to challenge any statement about funding even before the assessment process has started – and to challenge any negative outcome decision.
Sarah writes…
“We had my mother’s MDT [Multi-Disciplinary Team] assessment this morning. The assessor wouldn’t give us her assessed ratings in cognition and behaviour as she wanted to read GP/Dementia team reports first and so we didn’t get a decision on a recommendation for CHC or not.
I have concerns about the following things that happened at the meeting:”
“1) First question was whether mum was self-funding – I challenged why this was relevant but was told it was needed for her notes.”
The issue of funding care home fees is inappropriate and should never arise at this preliminary stage.
The Clinical Commissioning Group’s appointed Assessors are there to provide an independent fair assessment based on clinically assessed healthcare needs. Private funding arrangements are irrelevant and should not even be discussed. The Assessors’ function is to make a recommendation to the Clinical Commissioning Group as to your relative’s eligibility for NHS Continuing Healthcare Funding. If self-funding is mentioned at this stage, you must object strongly as it is entirely irrelevant. It is not the Assessors’ job to discuss funding options.
Read our blogs:
- The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment
- So will you be self-funding?
“2) No social worker was present just the assessor (who was a mental health nurse), myself and my sister, and the care home manager who we asked to sit in.”
CTBD response: The fact that there was only one assessor available is contrary to The National Framework for NHS Continuing Healthcare and NHS – funded Nursing Care (revised 2018).
Paragraph 120 of the National Framework provides that the Multi-Disciplinary Team Assessment (MDT) should consist of at least 2 professionals who are from different healthcare professions, or one professional who is from the healthcare profession, and one person who is responsible for assessing persons who may have needs for care and support (e.g. a social worker).
Paragraph 121 of the National Framework, which states, “These professionals should be knowledgeable about the individual’s health and social needs and, where possible, have recently been involved in the assessment, treatment or care of the individual.”
You must therefore check with the Assessors what involvement they have previously had in your relative’s daily care needs. If, as is commonly the case, they have had no direct knowledge or involvement, then question how they can comply with the National Framework and make a valued assessment.
Note: You may have valid grounds for appeal if the outcome goes against you and funding is not recommended (or withdrawn).
“3) The assessor said she would judge mum’s behaviour on the recent period since she started on anti-psychotic drug; the fact that her behaviour/cognition was considerably worse before the new medication was not relevant. I argued that the need was still the same but was being managed by the new drugs. I was told the assessment is not there to look at needs before medication started being taken. The anti-psychotic drugs now meant her needs had been lowered.”
CTBD response: In order to carry out a fair and robust MDT assessment, the Clinical Commissioning Groups Assessors are obliged to complete the Decision Support Tool (DST) before making their recommendations as eligibility for NHS Continuing Healthcare Funding. This means taking a holistic approach and looking at the totality of the individual’s needs by reference to the 4 Key Indicators (Nature, Intensity Complexity and Unpredictability), not just taking an arbitrary selected start date or looking at the introduction of a specific drug to suit the Assessor’s convenience (or objectives).
They must look at the full picture and medical history in order to determine whether there has been a change in need, when that change occurred, and how it is being managed.
Certain healthcare needs will inevitably impact on other care needs across other 12 Care Domains within the DST, and quality and quantity of care needed to manage them.
For further reading, we recommend you read these helpful blogs:
- Understanding the four key indicators
- Take a holistic approach to improve your chances of getting CHC Funding
Just because the needs are’ better’ managed and controlled by anti-psychotic medication does not necessarily reduce the nature, complexity or intensity levels of need. The needs are still there and have not gone away! Such medication has to be administered carefully in a controlled fashion.
Important: Under paragraph 63 of the National Framework, “The decision-making rationale should not marginalise a need, just because it is successfully managed: well-managed needs are still needs (refer to paragraph 142 – 146). Only where the successful management of a health care need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.”
If this happens to you, quote the maxim: “well – managed needs are still needs.”
However, the issue of ‘well-managed’ needs is fundamental, but often misunderstood.
Read Practice Guidance 23 of the National Framework page 117 – “How should the well-managed need principle be applied?”
For additional reading, go to our blog: Do you really understand the “Well-Managed Needs” argument? – 2018. Although this references the previous National Framework (Revised 2012), the concepts and arguments remain the same as the newly revised 2018 edition.
“4) We were told several times that there are people far worse than my mum. This seemed to imply that as long as there were people who had higher needs then my mum, her needs would be downgraded. This did not seem to be to independently assessing my mum’s needs on her own terms. The assessor was professional and was doing her best. I have no complaints about her behaviour, but I am not convinced everything she said was in line with the CHC guidelines.”
CTBD response: Comments like this are wrong and can put families off pursuing an assessment (or any appeal).
We know all too well that the assessment process carried out by the MDT is highly subjective and based on their interpretation of matching healthcare needs against the DST scoring criteria – hence inconsistent application and successful outcomes across the country. But to make unfounded comparisons and say that there are other people who are far worse is meaningless and tantamount to an abuse of process. What possible relevance does someone else’s needs have on your relative’s DST assessment at that point in time?
No two people are alike. Each individual’s care needs and circumstances will be entirely different.
Important: Every case should be dealt with on its own merits based on that individual’s clinically assessed healthcare needs.
Whilst there may well be people who have a far higher level of need, that does not necessarily mean that Sarah should just give up and accept that her mother will not qualify for funding. The assessment process should be carried out independently, robustly and fairly, and if you are not satisfied, or if comments like this are made, you must object!
An Assessor should not make such pre-judgmental comments which could indicate that they have already determined the outcome prior to completing the DST. Again, it is about looking at the overall totality of need and taking an holistic approach.
Don’t be fooled by courtesies and pleasantries offered by the Clinical Commissioning Group’s Assessors. Don’t forget the MDT panel members have been appointed by the CCG to determine eligibility. Unfortunately, quite often, due to a lack of training or understanding of the National Framework, (or more cynically with a desire to protect NHS budgets), Assessors can make incorrect assessments and recommendations whereby NHS Continuing Healthcare Funding is not granted, or else make inappropriate or misleading comments which are contrary to the National Framework.
You must read and get to grips with the National Framework and stand your ground.
Professional advocacy help:
Don’t forget: To give yourself the best chance of success, you are entitled to have an advocate with you at the MDT (or appeal). Securing funding at this stage could save your relative many thousands of pounds a month in unnecessary care fees. Visit our one-to-one page if you need specialist professional advice or advocacy services at any stage of the assessment process.
We also suggest that you read our blog: “Can The MDT Panel Refuse To Proceed If I Have An Advocate?”
Attending an Assessment or Independent Review Appeal?
Finally, we also recommend that you read pages 115 & 116 of the National Framework: Practice Guidance 21: What are the elements of a good multidisciplinary assessment of needs?
For more help with Multi-Disciplinary Team assessments, what to expect, how to tackle them, traps and pitfalls, plus lots more free information, articles and resources, visit our website and use the search box to find many more helpful blogs.
Try this related article on MDTs which contains several direct links to get you up to speed quickly:
New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…
If you’ve had similar experiences – or you’ve had a good result with NHS Continuing Healthcare – add your comment below…
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My father in law has not yet had an assessment and I have requested one. The problem, as for Sarah, is that he is on anti-psychotic medication for schizophrenia, which is incurable. This is working now to an extent but it has taken the doctors months to get the dosage correct. Before that, which dates back to October 2022, he was violent, so that the care home was unable to cope and he was transferred back to hospital and then to a new home. He did not know where he was, could not remember his friends, was unable to dress or successfully manage the toilet, had to be assisted so he did not fall and so on. But his difficulties go back to 2014 when he was taken to hospital and. put on the drugs. In 2018 he was found at night on the motorway by police telling them that voices were telling him to stop the traffic and he was sectioned. Could anything be more dangerous to both him and other people? Last year, in July, he became totally confused and irrational and was taken to hospital and subsequently to a care home where he still is. He had failed to take any medication for 3 months and had not a scrap of food in the house and so was not eating and was losing weight. So, as in Sarah’s case, it is essential for the assessors to go back some considerable time to assess what he is like without proper medication. But with an arbitrary cut off point of recent origin, it will take all my advocacy skills to persuade them otherwise, but I think that this is essential. Otherwise, the MDT will be assessing well managed needs and not how he is without medication. The drugs are simply a control mechanism because he can never be cured.
I would be interested to know where Sarah’s assessment was (i.e which trust), as the comments she makes sound spookily exactly like the ones we encountered with my mother-in-law. We took them to IRP, whcih took a long time, but the outcome from the IRP requested that a retrospective review was undertaken for a specific period until my mother-in-law’s death. We are currently working through that.