This article is based on an older blog which has been updated in light of the recently updated National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care.
If families are told untruths about NHS Continuing Healthcare funding (CHC) or are subjected to flawed funding assessments and decisions, it can have devastating financial consequences.
A negative outcome refusing or withdrawing CHC funding could result in families paying many thousands of pounds each month for their relative’s care fees, quite unnecessarily, and often resulting in them self-funding their care from private savings or the sale of their home.
Similarly, misleading or incorrect statements about their entitlement to CHC, could put families off even seeking an assessment for eligibility or pursuing a valid grounds for appeal.
If you or a relative are currently going though the NHS Continuing Healthcare assessment process, read on. We’ve listed here 10 typical untruths families are told about NHS Continuing Healthcare funding. They’ll help you recognise and challenge false information you may be given.
10 more untruths about NHS Continuing Healthcare:
1. You are not allowed to see any of the assessment notes
If it’s you who is being assessed, then of course you are entitled to see the assessment notes and the decision-making rationale for the CHC funding decision.
Alternatively, if you are acting as your relative’s representative, you are also entitled to see the notes and decision-making rationale. Without this, you are being denied the ability to properly consider appealing any decision that denies funding. So, insist on being sent a copy.
Read: Know your rights – Appealing the CCG’s refusal to grant CHC funding
Your position will be strengthened if your living relative has given their express consent or you are appointed as their Attorney under a valid Lasting Power of Attorney. Failing which, you can argue ‘best interests’.
Essential: Have You Got A Power Of Attorney
2. You are not allowed to attend CHC assessment meetings
Many families are told this, and it’s not correct. Indeed, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care makes it very clear that the assessment process is intended to be ‘person centric’ – i.e. the individual is at the heart of the assessment process.
What’s more, families should be fully involved in the process and that they should have the opportunity to participate and give their input.
The National Framework sets this out clearly and here are a few examples you can quote:
“9. The process of determining eligibility and planning and delivering services for NHS Continuing Healthcare and NHS-funded Nursing Care should be ‘person-centred’. The individual’s views and/or those of their representative should be sought and considered throughout the process, and appropriate care and support provided to meet the assessed needs as defined in the care plan…”
“68. 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 centre of the assessment and care-planning process.”
“69. 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;
- c) addressing communication and language needs;
- d) obtaining consent to any physical intervention/examination as part of the assessment process (where the individual has capacity to give this);
- e) obtaining consent to the sharing of personal data with third parties (e.g. family, friends, advocates, and/or other representatives) (where the individual has capacity to give this);
- f) dealing openly with issues of risk; and
- g) keeping the individual (and/or their representative) fully informed.”
“71. 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 130, 179- 181).”
3. You are not allowed to speak during assessment meetings
This is complete nonsense!
You have every right to be heard and to fight for your relative’s case on eligibility, and make all the verbal and written points you want to make to support their case.
Points 1 and 2 above, make it very clear how important it is that the person being assessed and/or their representative are fully involved, informed, empowered and encouraged to play a central role, and contribute to the assessment and decision-making process. Make sure you familiarise yourself with the National Framework. Here’s a selection of paragraphs that will help you:
“74. In the spirit of the person[1]centred approach, practitioners should make all reasonable efforts to seek the participation of the individual (or their representative) for the assessment and review process for NHS Continuing Healthcare, during each stage of the process. For a comprehensive assessment, the best evidence available at the relevant time should be considered. This should involve consideration of the individual’s (or their representative’s) view, and they should be empowered and assisted to participate. Throughout the process, this person-centred approach should be embedded in all decisions which relate to the individual’s needs assessment, and their care planning.”
“141. ICBs may use a number of approaches (e.g. face-to-face, video/tele conferencing etc.) to arranging these MDT assessments in order to ensure active participation of all MDT members, the individual and their representative, and any others with knowledge about the individual’s health and social care needs as far as is possible. It is best practice for assessors to meet with the individual being assessed, ideally before the MDT meeting, and any arrangements should include consideration of the best options for the individual, following a person-centred approach…”
“PG 24 What is the role of the individual during the multidisciplinary team process?
24.1 The individual or their representative cannot be members of the MDT. However, they should be fully involved in the process and be given every opportunity to contribute to the MDT discussion.”
PG 33 What happens if the individual or their representative disagrees with any domain level when the DST is completed?
33.1 Whilst the individual and/or their representative should be fully involved in the process and be given every opportunity to contribute to the MDT discussion, the membership of the MDT consists of the practitioners involved (refer to paragraphs 139-143 of the National Framework regarding the composition of the MDT). The approach described in Practice Guidance note 34 applies to disagreements between practitioners and not when an individual or their representative disagrees with individual domain levels chosen in the completion of the DST. However, concerns expressed by individuals and representatives should be fully considered by reviewing the evidence provided. If areas of disagreement remain these should be recorded in the relevant parts of the DST.
4. You are not allowed to take anyone with you to assessments
Again, this is nonsense. As you can see from the above, you can take someone with you to support you, to be your advocate or just provide a listening ear or notetaker – even if you are already representing your relative.
You can even take more than one person if you want to.
It is courteous to let the NHS Assessors know who will be coming with you, but don’t let them convince you that you can’t bring anyone.
If you are denied access or an advocate, that will give grounds for appeal.
Can The MDT Panel Refuse To Proceed If I Have An Advocate?”
5. If you take a solicitor with you, the solicitor is not allowed to speak
Again, this is not true. See the National Framework:
PG 58 Do individuals need to have legal representation during the NHS Continuing Healthcare eligibility process?
“58.1 No, although individuals are free to choose whether they wish to have an advocate present, and to choose who this advocate is. This National Framework (supported by Standing Rules Regulations and Care Act 2014 Regulations) sets out a national system for determining eligibility for NHS Continuing Healthcare. The eligibility process is focused around assessing an individual’s needs in the context of the National Framework rather than being a legal or adversarial process.
58.2 If the individual chooses to have a legally qualified person to act as their advocate, that person would be acting with the same status as any other advocate nominated by the individual concerned. “
In short, your solicitor or other (legal) advocate will have exactly the same rights and status as any other kind of non-legal representative to speak and ask questions about the individual assessment process taking place.
Given that the CHC assessment process can be a daunting, complex and emotional experience as you battle with the NHS for your relative’s entitlement to CHC funding, we recommend you consider seeking professional guidance and advocacy support.
6. Local authorities/councils never get involved in the NHS Continuing Healthcare process
Local authorities/councils MUST be involved in the Continuing Healthcare process! How else will they comply with the National Framework (the Care Act 2014 and the Coughlan case) be able to decide if a person’s care is beyond their legal remit?
For more information, read these helpful blogs:
The Coughlan case and Grogan case: Your 9-point checklist for NHS Continuing Care
Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?
Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”
Part 3: Pamela Coughlan – Ancillary and Incidental to the Provision of Accommodation
7. Local authorities/councils never get involved in the Continuing Healthcare process if a person has savings
Nonsense. A person’s money/assets have absolutely nothing to do with the NHS Continuing Healthcare process. It is about healthcare needs ONLY – and the same answer as point 6. above also applies.
8. NHS Continuing Healthcare funding only covers 2 hrs care a day
We frequently hear of families being told that NHS Continuing Healthcare is capped. It is not.
There are many instances where people receiving care at home are told they can only have ‘x’ number of visits per day. Again, NHS Continuing Healthcare is not capped, and it must cover ALL assessed healthcare needs, whatever those needs are – including social care needs.
See page 10 National Framework:
“11. Where an individual has a primary health need and is therefore eligible for NHS Continuing Healthcare, the NHS is responsible for providing for all of that individual’s assessed health and associated social care needs, including accommodation, if that is part of the overall need.”
9. You can’t have more than one carer
This is another false statement.
The CHC assessment will determine your relative’s eligibility for CHC funding and the package of care needed to meet their healthcare requirements. Remember, if an individual is eligible for CHC funding, the NHS should meet the cost of all their assessed care needs, however many carers it takes. Some individuals with complex, intense and unpredictable care needs may require at least 2 carers (or more) to provide, interpret and manage their day-to-day care needs, including medication and transfers. There is no cap on the number of carers.
10. The Fast Track process only applies if a person has a prognosis of less than three months
Not true. The Fast Track process applies if a person is at end of life OR in a period of rapid decline. The period of rapid decline does not have to be end of life, and there does not have to be an exact prognosis about how many days or weeks a person may or may not have left to live.
How To Fast Track The Continuing Healthcare Funding Process.
If you haven’t read the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, it’s a very good idea to familiarise yourself with it, as it will give you extra ammunition for challenging incorrect funding decisions and fighting your relative’s corner during assessment meetings.
For more background reading on CHC assessments:
Preparing for the Multi-Disciplinary Team Assessment
What Happens At The Multi-Disciplinary Team Meeting?
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
Preparation, Preparation, Preparation! Never Take MDT Outcomes For Granted
If you need help with an MDT assessment, appeal or advocacy support don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.
Plus, don’t forget, there is plenty of free information and resources to help you on our Care To Be Different website.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.
What’s your experience in NHS Continuing Healthcare assessment meetings? Leave your comments below.
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I recently appealed against a CHC refusal of funding for my husband, having used your book and the Beacon advice.
For so long I had been told that it wasn’t worth applying for funding. When we got an assessment, the care home nurse actively worked against us. I can only conclude that she wanted to show how well my husband was being cared for. Her opinion, rather than objective evidence from his notes, was heavily relied upon by the assessor. I was able to present dates and events clearly showing his needs. There were many hoops to be jumped through to appeal but when I did finally get through, the appeals lead could not have been kinder or more supportive. I wish I had persisted a year ago with my request for an assessment. I can’t stress how desperately ignorant care homes are about CHC funding.
I really hope that people are able to benefit from the advice given here. My late husband was refused CHC twice despite the terrible decline in his condition and only received funding just weeks before he died. Absolutely devastating.
After 10 years and going through every stage and being told I was not going to get Continuing Health Care for my mother, after an INDEPENDENT REVIEW PANEL.
After naming 40 illness’s my mother had, I was offered a sum of money for 0ne month’s ,
CARE HOME FEES if I signed a NDA.(15 MONTHS AGO).
The CCGare never in a position to force you to sign a NDA. They tried to get me to sign one and I refused. I actually went after them for maladministration and they paid out. I guess what I am saying is don’t accept what they say or do is correct. Challenge, Challenge and challenge again.