NHS Continuing Healthcare at home: when the NHS pays for all of it

Care in England is split. Health care is free from the NHS. Social care, which includes help with washing, dressing and eating, is means tested by the council. Continuing Healthcare is what happens when someone’s needs are so heavily medical that the whole package is treated as health care and the NHS takes it on. It is not about a diagnosis; it is about the nature, intensity, complexity and unpredictability of what you need, day to day.

The assessment scores you across twelve areas of need, called domains: breathing, nutrition, continence, skin, mobility, communication, psychological needs, cognition, behaviour, drug therapies and medication, altered states of consciousness, and other significant needs. Each is rated from no need up to priority. As a rule of thumb you are likely to have a primary health need with one priority need, or two or more severe needs, or one severe need together with several high or moderate ones.

The scores are not the decision. The team then looks at the four characteristics of your needs as a whole: how they interact, how much skill they take to manage, how often they change and how hard they are to predict. That judgement is where most arguments happen.

Well-managed needs still count. If a need only looks small because it is being skilfully controlled, the assessment must score the underlying need.

1. 01
   Ask for the checklist

   You, a relative, the GP, a district nurse or a social worker can ask. It is a short screening tool and the threshold to pass it is deliberately low.
2. 02
   The full assessment

   A positive checklist triggers an assessment by a multidisciplinary team, at least a nurse and a social worker, within 28 days. They complete the decision support tool with you or your representative present.
3. 03
   The decision

   The team recommends; the integrated care board decides. You get the decision and the completed tool in writing.
4. 04
   The package and reviews

   If you qualify, the NHS puts a care package in place and reviews it after three months, then yearly.

If someone is deteriorating quickly and may be entering the last weeks of life, a doctor or senior nurse can complete the fast track tool instead of the checklist, and the package should be in place within 48 hours. Fast track funding is not time limited and can pay for a live-in carer at home so that someone can die where they want to. It is reviewed, and can be withdrawn if the person stabilises, at which point the ordinary process applies.

The NHS meets the whole assessed package: visits, nights, a live-in carer, nursing, equipment. It does not pay your rent, food or bills, and it does not pay for care beyond what the assessment says you need. You can take the package as a personal health budget, which works like a direct payment: money to spend on the agency or carer you choose, within the agreed plan.

One thing to know: if you are already paying an agency, the ICB will normally commission its own package rather than simply taking over your bill, and it may want to use its contracted providers. A personal health budget is the way to keep the carers you have.

Most people are refused. You have six months to ask the ICB for a local review; if that fails, an independent review panel at NHS England; and after that the Parliamentary and Health Service Ombudsman. Get the completed decision support tool, go through each domain against the evidence, and argue the four characteristics as well as the scores. Beacon, a not for profit advice service, offers free initial help. See also who pays for home care for what the council covers in the meantime.