Funding for healthcare needs from NHS Continuing Healthcare

A few people have asked me about NHS Continuing Healthcare (CHC), so I thought I’d share what I’ve learned.

One of the biggest misconceptions is that you have to reach a certain number of points to qualify. You don’t.

CHC assessments use something called the Decision Support Tool (DST), which looks at 12 care domains:

• Breathing
• Nutrition
• Continence
• Skin and tissue viability
• Mobility
• Communication
• Psychological and emotional needs
• Cognition
• Behaviour
• Drug therapies and medication
• Altered states of consciousness
• Other significant care needs

Each domain is scored according to the level of need (No Needs, Low, Moderate, High, Severe and, in a few domains, Priority).

Although eligibility would normally be expected where someone has one Priority level or two Severe levels, these are not the rules for qualifying. Many people are found eligible without meeting either of these thresholds.

The legal test is whether the person has a Primary Health Need. Assessors must look at four key characteristics:

• Nature – What are the person’s needs?
• Intensity – How much care do they need, and how often?
• Complexity – How do different needs interact and make care more challenging?
• Unpredictability – How likely are things to change suddenly or require rapid skilled intervention?

This is why parents are often wrongly told, “Your child doesn’t have enough Highs.” That isn’t how CHC is supposed to be decided.

For children and young people with CHD2, needs often span multiple domains. These may include:

• Unpredictable epilepsy and seizures.
• Altered states of consciousness before, during or after seizures.
• Autism and significant communication differences.
• Moderate or severe learning disability.
• Behaviour requiring continuous supervision to maintain safety.
• Sensory processing differences.
• Mobility difficulties or poor awareness of danger.
• Complex medication regimes.
• Sleep disturbance requiring overnight monitoring.
• The need for constant 1:1 supervision because of the interaction between epilepsy, autism, learning disability and behavioural needs.

Each of these needs might not score at the highest level on its own. However, it’s the way they interact that matters. A young person with CHD2 may have epilepsy, communication difficulties, impaired understanding of danger, sensory dysregulation and behavioural needs that all increase one another’s complexity and unpredictability.

The National Framework says assessors must look at the whole picture, not simply count up the scores in each domain.

One final point: don’t wait to be offered a CHC assessment. If your child or young person has complex health needs, you can ask your Integrated Care Board (ICB) for a CHC Checklist assessment. If the Checklist indicates potential eligibility, they should arrange a full multidisciplinary assessment.