Navigating NHS Continuing Healthcare: a brief guide for private clients and their families

There will be several three-letter acronyms used in this blog. I am sorry, but the NHS do love their TLAs. I will limit their use, but where appropriate, I will first write out the full term followed by the acronyms in (brackets).

When it comes to care funding in England, the National Health Service (NHS) Continuing Healthcare (CHC) process is a vital yet often misunderstood entitlement. CHC is a fully funded package of care provided by the NHS for individuals with significant and complex health needs, known as primary health need(s) (PHN). The Local Authoirty is prevented from charging an individual where they have a PHN and where the NHS should meet that care through the local Integrated Care Board (ICB). However, determining eligibility can be complicated, and for many families and the person being assessed, the outcome of an assessment can be long, stressful, challenging and disappointing. When this happens, appealing the decision becomes the next step, but it can feel like navigating a labyrinth, and we can help with that process as expert care assessors and advocates.

Understanding NHS Continuing Healthcare

The natonal guidance, also called a framework (which you can read in full here National framework for NHS continuing healthcare and NHS-funded nursing care - GOV.UK (www.gov.uk), says:

"NHS continuing healthcare means a package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a ‘primary health need’ as set out in this guidance. Such care is provided to an individual aged 18 or over, to meet needs that have arisen as a result of disability, accident or illness. The actual services provided as part of the package should be seen in the wider context of best practice and service development for each client group. Eligibility for NHS continuing healthcare places no limits on the settings in which the package of support can be offered or on the type of service delivery”

NHS Continuing Healthcare is intended for individuals with primary health or care needs. It is not dependent on a particular disease, diagnosis, or condition, nor upon who provides the care or where that care is provided. Unlike social care, which is not free and typically subject to a means-tested financial assessment by the financial team within social services, NHS CHC is free, and you can not be charged for CHC. If eligible, the NHS covers the entire cost of care, whether delivered at home, in a care home, or in another setting. However, determining whether an individual has a "primary health need" can be highly subjective, leading to frequent disputes and appeals, even between professionals and experts. Often, the courts have had to decide what is and is not a primary health need.

I have listed below two critical cases in the area of CHC that provide key pointers to establishing CHC. A further blog will explore these in detail, but this is a brief overview.

Coughlan Case (1999)

• Overview: Determining when a person's primary need is for healthcare versus social care
• Facts: Pamela Coughlan, who was tetraplegic, argued that her care should be fully funded by the NHS, not by her local authority (and nor should she have to pay for it). As her needs were primarily healthcare related, she challenged the local council and the NHS bodies at the time before the ICBs were created. The Court of Appeal decided in this case referred to as the 'Coughlan judgment' that where a person’s primary need is a health related, the NHS is responsible for fully funding the care, and not the local council. This case clarified the distinction between healthcare (NHS responsibility) and social care (local authority responsibility). This case is a cornerstone in establishing the principle that only people with a "primary health need" should receive NHS Continuing Healthcare.

Grogan v Bexley NHS Care Trust (2006)

• Overview: Application of NHS CHC funding and eligibility criteria.
• Facts: The Grogan case dealt with the threshold of eligibility for NHS CHC. Mrs Grogan had a range of complex health and care needs and was denied CHC funding by the NHS. The Court ruled that she should receive NHS CHC funding because her needs were primarily health-related, even though she also required social care, and even if the social care needs can meet her health needs. This case is essential, as it reinforced that health needs are the primary reason for CHC, not just social needs, and nor should the social care needs dictate if a person could receive NHS CHC.

Common Reasons for Appeal

Many families find themselves needing to challenge an NHS CHC decision, and the decision was wrong, or the threshold was applied too highly, or they failed to follow the guidance, or they did not consider and weigh out the 'managed need rule' (the managed need rule warrant it's own blog one day). Some other key reasons include:

1. Initial Eligibility Decisions: After a full assessment using the Decision Support Tool (DST), many individuals are deemed ineligible, despite having complex health needs.
2. Assessment Process: Sometimes, the assessment process may not have been conducted in line with NHS guidelines. This could involve missing documentation, lack of professional involvement, or errors in scoring the needs.
3. Review of Current Funding: Individuals already receiving CHC funding are subject to periodic reviews, and funding may be withdrawn if the NHS determines that their needs no longer meet the eligibility criteria. Appeals are often launched to dispute these reviews.

The NHS CHC Appeals Process

Understanding the different stages of the appeals process is essential for anyone involved in disputing a decision.

1. Local Resolution led by the ICB

The first step after a decision is to seek local resolution. This involves contacting the ICB responsible for the decision and requesting a review. The ICB may offer a meeting to discuss the reasons for ineligibility, at which point further evidence can be submitted.

At this stage, it's essential to:

• Request the full Decision Support Tool and assessment notes.
• Gather additional evidence from medical, health and care professionals, care providers, and other relevant parties.
• Highlight any discrepancies or gaps in the original assessment.

2. Independent Review Panel (IRP) led by NHS England

If local resolution does not yield a satisfactory outcome, the next step is to request an independent review. The NHS England Independent Review Panel (IRP) will examine whether the ICB followed the correct procedures and applied the criteria fairly. This panel is often made up of senior managers from other ICBs and other Local Autorites. The panel does not re-assess the individual but reviews whether the original decision-making process was flawed. It's crucial to present a well-documented case at this stage, often involving specialist expert(s) or advocacy support. Evidence from care plans, medical records, and detailed descriptions of the individual’s day-to-day health needs should be submitted to illustrate how their condition meets the criteria for NHS Continuing Healthcare.

3. Parliamentary and Health Service Ombudsman (PHSO)

If the IRP fails to deliver a satisfactory outcome, the next avenue for appeal is to escalate the matter to the Parliamentary and Health Service Ombudsman (PHSO). The Ombudsman will review complaints about maladministration or unfairness in the way the appeal has been handled. This is typically the last resort for families who feel that every other stage of the process has failed to recognize their loved one's needs.

The PHSO can only address whether the National Framework guidance and the Decision Support Tool have been applied correctly in your case. Concerns about the type of care or the location of the care package are addressed by a separate complaints process. The PHSO will listen to both parties, look at the facts and the evidence, and then tell you their view. If they think there is something to put right and an agreement can't be reached, then they have official powers to order what needs to be done.

Key Considerations for Families and Professionals

1. The Importance of Evidence

Detailed and thorough evidence is essential to a successful appeal. Medical records, care assessments, GP letters, care assessments, physiotherapy reports, speech and language assessments, nursing assessments, tissue visibility reports, dementia care plans, mental health care records and testimony from care and health professionals all play a crucial role in demonstrating the complexity and severity of the individual’s health needs.

The Decision Support Tool (DST) is based on 12 domains of care, including mobility, cognition, psychological and emotional needs, and breathing to name a few. The evidence must show that the individual has needs of such complexity or intensity that they should qualify for CHC, or due to their nature of the needs or unpredictability, a person's needs beyond outside the spectrum of social care in health.

2. Getting Expert Support

The CHC appeals process can be long, complex, and emotionally draining. Engaging a specialist advocate (such as Beacon CHC) or independent social worker from Social Worker Gary, specialising in CHC, can be invaluable. These professionals have experience in interpreting the DST, understanding how the criteria are applied, and can help families navigate the intricacies of the process. They can also provide advocacy support during appeals, ensuring that families have a voice at every stage.

3. Being Persistent

It’s not uncommon for families to face multiple hurdles in the appeals process. NHS CHC is often underfunded, and assessments can be influenced by budgetary pressures. Being persistent and determined, while continuing to provide detailed evidence, can make a significant difference to the outcome of an appeal. It is not a short process, and families will need to be aware that the process can be lengthy and, at times, it may feel like nothing is moving forward. We will always support families through this process and explain every stage of the steps.

4. Awaiting the Outcome

Appealing a decision related to NHS Continuing Healthcare can be a challenging and often frustrating process. However, with the right preparation, a thorough understanding of the system, and professional support, many families do successfully overturn ineligibility decisions; it is critical to get specialist support and advocacy from an expert, and whilst you may have a strong view about what should be the answer, a professional and expert will be abel to look at all the facts, independently ad guide you forward.

Ensuring a fair outcome in NHS CHC assessments is not just about interpreting the guidelines correctly - it’s about securing the necessary care for some of society's most vulnerable individuals. By working collaboratively with families, we can be that link between the health and care (complex) world and you; we can ensure that those who are entitled to CHC receive it, and the appeals process serves as a robust safeguard for fairness and justice.

Gary Spencer-Humphrey BA (Hons), LL.B (Hons), MA, PgD, RSW, MBASW, FRSPH is an independent social worker and expert witness in adult social care, specialising in mental health and capacity assessments. He founded CareDoctors, a specialist multi professional hub of health and care experts in Hampshire. He has extensive experience supporting families through the NHS Continuing Healthcare assessment and appeals process. You can contact our team by email info@caredoctors.co.uk or by our website www.caredoctors.co.uk