Public sector health organisations, including the NHS, often have a legal duty to consult and involve people when making substantial changes to their services. One such area is NHS Continuing Healthcare (CHC), which supports individuals with complex healthcare needs, and required a significant rework back in 2022.
The NHS ran a digital consultation on Citizen Space because it brought convenience and coordination to an otherwise complex task — engaging effectively with patients, the public, and stakeholders.
On this page, we’ll talk you through how they ran the consultation, and how it resulted in improved patient outcomes and a more streamlined system for everyone.
What Is The CHC National Framework?
The NHS CHC is a package of fully-funded care for adults with complex, ongoing healthcare needs.
In these cases, patients require support that extends beyond the scope of typical NHS hospital services. And thanks to CHC, they can receive care in other settings that better suit their needs and preferences.
This could be in the comfort of their own homes, allowing patients to maintain independence and familiarity. Or, perhaps they’d be better in a nursing or care home, with access to skilled staff around the clock. In some cases, people might need compassionate end-of-life care in hospices.
The guiding principle is that, if you have a primary health need, the NHS will arrange and fully fund your healthcare until you get better. For example, if a doctor recommends you stay in a care home, the NHS directly contracts with the facility and covers all costs on your behalf.
But how does the NHS decide who qualifies for this crucial support? That’s where the National Framework for NHS Continuing Healthcare comes in. It’s essentially the rulebook that ensures fair and consistent access to CHC across England. It outlines the eligibility criteria, assessment process, and responsibilities of everyone involved — from NHS staff to local authorities.
What is the CHC Checklist?
To receive Continuing Healthcare funding, a patient needs to go through a two-step process:
1. The Continuing Healthcare Checklist Assessment
The first step in determining eligibility is a screening tool called the CHC Checklist. It’s designed to be relatively straightforward, involving a series of questions about the person’s health needs.
A healthcare professional (often a nurse or GP) or a social worker, will complete the Checklist based on observations, conversations, and medical records.
The good news is the threshold for passing the Checklist is deliberately set low. The aim is to cast a wide net and ensure anyone who could be eligible for CHC proceeds to the next stage — the Full Assessment.
Even if someone doesn’t “pass” the Checklist, it’s not necessarily the end of the road. You can ask for a reassessment if you believe the initial screening wasn’t accurate.
2. Full Assessment
Following a positive Checklist outcome, a Multi-Disciplinary Team (MDT) conducts a full assessment of the patient’s care needs and whether it meets CHC eligibility. What they’re looking for is evidence of a ‘primary health need’ — such as a disability, serious injury, or complex illness. They submit their findings to the local Integrated Care Board (ICB), which decides eligibility.
On the other hand, patients with social care needs are handled by the local authority instead of the NHS. This effectively makes it the responsibility of local government to engage the public on how social services are run, with a statutory duty to achieve ‘Best Value’ for local people. It’s especially important at the moment, with social care costs ballooning to £27.1 billion per year and making up the second-highest expense for councils after education.
5 Ways Public Consultation Shaped The CHC Framework
Since the CHC Framework was introduced in 2007, it’s undergone four major revisions to reflect best practices and improve patient outcomes. Public consultation is a big part of this — because the NHS needs to know where patients have been let down in order to plug the gaps and improve the service.
In 2022, the Health and Social Care Act introduced some wide-reaching reforms to Continuing Healthcare which necessitated the biggest public conversation yet. The NHS chose Citizen Space as their tool for collecting digital responses to the CHC consultation, and it resulted in some impressive changes to the National Framework…
5. Changes to Patient Consent Rules
Firstly, the Full Assessment process no longer requires explicit consent from patients. Thanks to consultation and feedback, the NHS recognised the need to align CHC with other legal frameworks, like the standard set in the Mental Capacity Act of 2005.
While this might sound like a backwards step, it’s actually designed to help patients receive the fully-funded care they need. As a safeguarding measure, consent is still required for physical exams, interventions, and sharing information with third parties.
The NHS was able to find a middle ground based on the real-world experiences shared by carers and families of patients, and it’s helping the whole system run smoother.
4. Changes to Hospital Discharge Principles
Consultation revealed the need for clearer guidelines around when CHC assessments should take place. The revised national framework emphasises assessing needs after hospital discharge, in a more familiar setting, because it allows for more accurate evaluations. This benefits both patients, who avoid premature assessments in a stressful hospital environment, and the NHS, as resources are used more effectively.
Meanwhile, interim funding continues until CHC eligibility is confirmed, meaning no one misses out on financial support during the transition. Five clear pathways now guide the process, improving consistency and ensuring nobody falls through the cracks.
3. More Emphasis on Virtual Healthcare
Virtual healthcare was first trialled by the NHS during the pandemic, and now, it’s here to stay.
The public consultation found that virtual CHC assessments were popular with both patients and families because of their convenience. It’s much easier for those in remote areas or with mobility issues to go through the process, meaning they get quicker access to essential support. The updated framework formally acknowledges this shift, while still guaranteeing the option of an in-person assessment if the patient prefers.
2. A CHC Fast-Track System for Critical Patients
Time is of the essence for critically ill patients, and the introduction of a Fast-Track system provides a faster route to CHC eligibility for those with rapidly deteriorating conditions.
Under this change, patients can skip the CHC checklist and go straight to the Full Assessment. Consultation showed that this was a frustrating hurdle for some families, who just wanted the peace of mind that their loved ones would get fully-funded care during an already stressful time. Now, the NHS can also arrange post-hospital care at an earlier stage, resulting in improved patient outcomes.
1. More Support for Carers
Carers play an invaluable role in the care system, yet their needs often sadly go unrecognised.
Through consultation, the NHS saw areas where they could better support carers through the CHC process. The updated National Framework involves carers right from the start, including hospital discharge planning prior to continuing care. Plus, carers themselves now have better access to assessments and support services to address their own well-being. It’s a win-win situation for everyone: carers and the patients who rely on them.
How The PHSO Used Public Consultation To Evaluate Continuing Healthcare Failings
The Parliamentary and Health Service Ombudsman (PHSO) is an independent watchdog for injustices and wrongful decisions in public bodies, including the NHS. They offer a free service to anyone who feels the NHS complaint service didn’t resolve their issue, and their decision is final.
The PHSO has three broad powers in healthcare:
- To ask the NHS to formally apologise for failures in their services.
- To recommend the NHS pay compensation to victims of injustice.
- To recommend changes to NHS policies or practices.
The PHSO has been particularly active in the case of NHS CHC funding, given the complexity of individual care needs and the sometimes-grey area between personal expenses and health expenses.
In 2003, they released a damning report on the state of the CHC system as it was, and recommended the government pay out £180 million to people who had inappropriately funded their own care. This led to the creation of the first National Framework for NHS Continuing Healthcare in 2007, which all NHS trusts had to implement that year.
While this did improve things, the ombudsman still saw a significant number of complaints where patients weren’t getting the support they needed to live with debilitating conditions. Between 2018 and 2020, the PHSO reviewed over 300 complaints related to NHS continuing healthcare. They found failures in both care planning and in reviews of previously unassessed periods — which led to uncertainty, poor health outcomes, and stress for families across the country.
In response, the PHSO made several recommendations. These included improving training for NHS staff, ensuring clear communication with families about what’s covered in care packages, and modernised national guidance on CHC eligibility criteria. These were reflected in the 2022 National Framework, which came with a new public information leaflet, an easy-read version, video explainers, and more formats for filling out the CHC checklist. Overall, a much more accessible experience for NHS staff and patients alike!
Conclusion
The National Framework for NHS Continuing Healthcare has come a long way since it was first released in 2007. Today, the system takes a much more person-centred approach, with clearer guidance for families, carers, and patients to understand how it affects them.
Public-sector agencies like the PHSO have done wonders in this area. Their recommendations drew on a vast body of patient feedback — bridging the gap between the NHS and regular people — and resulting in a more accessible experience for everyone.
Likewise, the NHS consultation was able to successfully engage with patients and carers, building on their experiences (both positive and negative) to improve how the CHC system functions as a whole.
—————
Organisations like the NHS use Delib tools because we’re the most flexible, user-friendly and cost-effective way to run digital consultation and engagement activity.
Book a free demo and we’ll show you how it works in action.
