NHS All age continuing care data set glossary

Commonly used terms within All-age Continuing Care (AACC) policy and guidance documents and within the AACC data set.

These definitions are used throughout the information standard.

NHS All age continuing care (AACC) is an umbrella term which collectively covers the following forms of continuing care for children, young people, and adults: 

• Adult activity types under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (NHS CHC and FNC), and jointly funded (JF) packages of health and social care 

• Children and Young People’s Continuing Care (CYPCC) as set out in the National Framework for Children and Young People’s Continuing Care.

NHS Continuing healthcare (NHS CHC) is a package of ongoing care that is arranged and funded solely by the NHS where the individual has been assessed and found to have a 'primary health need' as set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. 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.

There are 2 referral routes for NHS CHC:

• NHS Continuing Healthcare (Standard) – A referral is made for a full assessment by a multi-disciplinary team using a decision support tool
• NHS Continuing Healthcare (Fast Track) – Funding for NHS CHC is 'fast tracked' via completion of a fast track pathway tool by an appropriate clinician

NHS-funded nursing care (FNC) is another type of funding that can result from the NHS CHC assessment process. 

NHS-funded nursing care (FNC) is provided by the NHS to a person in a nursing home who does not qualify for NHS CHC but has been assessed as requiring FNC. FNC is the funding provided by the NHS to support the provision of nursing care in a nursing home by a registered nurse. Since 2007 FNC has been based on a single band rate. In all cases individuals should be considered for eligibility for NHS CHC before a decision is reached about the need for FNC.

A decision on FNC eligibility needs to be taken by a registered nurse following a nursing needs assessment as set out in the FNC Practice Guidance.

In the case of a negative checklist indicating an individual does not require a referral for assessment for NHS CHC, an individual may still be eligible for FNC. 

A referral (for example, positive checklist) for full assessment of NHS CHC may still also result in eligibility for FNC, if the CHC assessment decision outcome indicates the individual is not eligible for NHS CHC but requires FNC.

Adult joint funding relates to a joint package of health and social care whereby an individual’s care or support package is funded by both the NHS and a local authority (LA). Adult joint funding is a joint package of health and social care under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care whereby a person is assessed 'not eligible for NHS CHC' but has some specific needs identified that are beyond the limits of the LA to meet on its own. In such cases an LA may make a request to an NHS integrated care board (ICB) for joint funding for an individual’s care or support package.

For the purposes of the AACC data set adult joint funding only refers to cases that have had a full assessment for NHS CHC using a decision support tool (DST) and were found not eligible for NHS CHC but still had some assessed needs beyond the limits of the LA which the ICB have agreed to fund (exclusive of NHS-funded care only payments). 

Any joint funding arrangements for individuals that have not had a CHC assessment with a 'not eligible for NHS CHC' decision should not be included in data set submissions.

Children and young people’s continuing care (CYPCC) is a package of care that is required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.

There are 2 referral routes for CYPCC:

• CYPCC (Standard) - A referral is made for a full assessment by a multi-disciplinary team using a decision support tool.
• CYPCC (Fast Track) - Unlike NHS CHC, there is no formal Fast Track process and ICBs may adopt different local processes. Children and young people who require fast-track assessment because of the nature of their needs (such as a palliative care need) should be identified early and the child or young person’s needs met as quickly as possible. 

Children and young people receiving continuing care may not only require support from health services, they may also have special educational needs and require support from social and educational services. Although CYPCC is led by health, collaborative support is vital to ensure holistic needs are met. 

Developing a multi-agency understanding of a child’s needs, and then agreeing a package of care requires collaboration on the assessment process, and agreement subsequently as to who has responsibility for commissioning the different elements of the care package.

Unless there is a good reason for this not to happen, continuing care should be part of a wider package of care, agreed and delivered by collaboration between health, education, and social care.

To reflect the multiple agency approach of CYPCC, the AACC DS includes 4 CYPCC data categories to reflect different ways that CYPCC may be funded:

• CYPCC – funded by the NHS only
• CYPCC – joint with social care (joint funded by the NHS and a local authority where the local authority funds social care)
• CYPCC – joint with education (joint funded by the NHS and a local authority where the local authority funds education)
• CYPCC – tripartite with social care and education (joint funded by the NHS and a local authority where the local authority funds both social care and education)

These definitions are used throughout the AACC101Referral, Assessment and Outcome group in the Technical Output Specification.

A service request refers to any new requests or other notifications to the ICB in relation to NHS CHC, FNC, CYPCC, or joint funded activity, such as referrals for full assessment (for example, a positive checklist or direct referral), negative checklists, fast track referrals, NHS CHC Previously unassessed period of care requests, joint package of health and social care requests, local resolutions, inter-agency disputes, or transfers of eligible cases from a different responsible commissioner.

A referral for assessment is the earliest notification to the ICB, or person or body acting on behalf of the ICB, that full assessment of eligibility is required (for example, a positive checklist or direct referral for NHS CHC).

An NHS CHC checklist is a screening tool which indicates whether a full assessment of eligibility for NHS CHC is required. 

NHS CHC checklists are applicable to NHS CHC packages of care for adults (aged 18 or over). For checklists applicable to children and young people refer to Children and Young People’s Continuing Care Pre-Assessment checklist below.

There are 2 potential outcomes following completion of the NHS CHC checklist:

Checklist - positive (NHS Continuing healthcare)

A positive NHS CHC checklist indicates an individual requires a referral for full assessment of eligibility for NHS CHC. It does not necessarily mean the individual is eligible for NHS CHC. 

Checklist – negative (NHS Continuing healthcare)

A negative NHS CHC checklist indicates an individual does not require a full assessment of eligibility and they are not eligible for CHC.

In the case of a negative checklist an individual may still be eligible for FNC following a nursing needs assessment. In the case of a positive checklist a full assessment for NHS CHC should be conducted before determining whether FNC is required.

The NHS CHC checklist used by all ICBs is published by the Department of Health and Social Care (DHSC) as part of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. Paragraph 114 of the Framework sets out:

“There may, very occasionally, be exceptional circumstances where a full assessment of eligibility for NHS Continuing Healthcare is appropriate even though the individual does not apparently meet the indicated threshold.”

In such scenarios it would be expected for the checklist outcome to still be recorded as 'positive' (referral for full assessment for NHS CHC is required) with a rationale for why scoring under the threshold for assessment has resulted in a positive outcome or referral for assessment.

Checklist – undefined (NHS Continuing healthcare)

An 'undefined' NHS CHC checklist is where it’s not clear whether a checklist received by an ICB is positive or negative, for example, the professional who completed the checklist may have forgotten to indicate the outcome as 'positive' or 'negative' in error. Instances of this should be rare, however where this occurs it may be possible for the receiving ICB to determine the appropriate checklist outcome from the scores provided. Alternatively, if this is not possible the checklist may need to be sent back to the submitting individual for further information.

A CYPCC pre-assessment checklist is a screening tool which supports in determining whether a child or young person should be assessed for CYPCC eligibility.

CYPCC pre-assessment checklists are only applicable to persons under the age of 18.

A CYPCC pre-assessment checklist is published by Department of Health and Social Care (DHSC) as part of the National Framework for Children and Young People’s Continuing Care. Unlike the adult NHS CHC checklist, the CYPCC pre-assessment checklist does not request a positive or negative outcome to be specified on the form, and it is down to the receiving ICB to determine, based on information in the pre-assessment checklist, whether a full assessment of CYPCC eligibility is required. Another difference compared to the adult CHC checklist, which is a standardised version used by all ICBs, is that the CYPCC pre-assessment checklist is a guidance document only. This means that different ICBs may adopt different versions of the CYPCC pre-assessment checklist for local use. 

To reflect the different local processes that may be used at different ICBs for CYPCC pre-assessment checklists, 3 category scenarios are included in the AACC data set:

• an undefined checklist, where the checklist received by an ICB does not indicate a positive or negative outcome at the point of receipt, and the ICB determines whether CYPCC assessment is required
• a negative checklist, indicating the individual does not require a full assessment of eligibility and they are not eligible for CYPCC (in instances where ICBs are using a local version of the pre-assessment checklist which allows a negative outcome to be specified), or
• a positive checklist indicating an individual now requires a full assessment of eligibility for CYPCC (in instances where ICBs are using a local version of the pre-assessment checklist which allows a positive outcome to be specified). It does not necessarily mean the individual is eligible for CYPCC

A direct referral for assessment of NHS CHC or CYPCC, without completing a screening tool such as a checklist. For example, in NHS Continuing Healthcare some ICBs operate trusted assessment arrangements whereby delegated professionals can make direct referrals for NHS Continuing Healthcare assessment based on clinical judgement without the need to complete an NHS Continuing Healthcare Checklist.

NHS CHC

Fast track refers to urgent cases that are assessed via a fast-tracked process to allow NHS CHC or CYPCC funding to be put in place faster than the standard referral process. 

For adult NHS CHC a standardised Fast Track Pathway Tool is published by DHSC as part of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. 

The adult NHS CHC Fast track pathway tool is used where an appropriate clinician considers a person should be fast tracked for NHS CHC because that person has a rapidly deteriorating condition that may be entering a terminal phase. The person may need an NHS CHC package of care to enable their needs to be urgently met (for example, to enable them to go home to die or to provide appropriate end of life support to be put in place either in their own home or in a care setting).

A completed NHS CHC Fast track pathway tool, with clear reasons why the individual fulfils the criteria, is sufficient to establish eligibility without the need to conduct a full assessment using a decision support tool (DST).

CYPCC

Unlike adult NHS CHC there is no standardised fast track tool published for CYPCC and ICBs may adopt different local processes. The National Framework for Children and Young People’s Continuing Care states:

"Children and young people who require a fast-track assessment because of the nature of their needs (such as a palliative care need) should be identified early and the child or young person’s needs met as quickly as possible. The continuing care process should not restrict access to end-of-life care for children and young people who require immediate support over a shorter period and should not result in any delay to appropriate treatment or care being put in place."

A previously unassessed period of care (PUPoC) refers to a request to consider NHS CHC eligibility for a past period of care, where there is evidence that the individual should have been assessed for eligibility for an NHS CHC package of care.

PUPoCs may relate to either deceased cases or current cases where there is a need to consider a past period of care, such as prior to a current referral. For example, an individual may be deceased, and their family may make a claim to consider eligibility for a past period of care in isolation, or an individual may be agreed eligible for Standard NHS CHC via the normal assessment route and have a claim for a past period of care to be considered. 

Please note that there is no PUPoC mechanism in the National Framework for CYPCC (2016).

A referral for a re-assessment of eligibility for NHS CHC or CYPCC, where a review of an existing NHS care package identifies a change in needs such that the individual may no longer be eligible for CHC or CYPCC.

For example, page 62 of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care sets out: "It is a core principle that neither an ICB nor a local authority should unilaterally withdraw from an existing funding arrangement without a joint reassessment of the individual, and without first consulting one another and the individual about the proposed change of arrangement."

Therefore, where a care package review indicates an individual may no longer be eligible for NHS CHC or CYPCC then a reassessment must take place.

Local resolution relates to the process an ICB uses to review an eligibility decision for NHS CHC, where an individual or their representative is unhappy with the outcome of the assessment.

Where it is not possible to resolve the matter through the local resolution procedure, the individual may apply to NHS England for an independent review of the decision.

An inter-agency dispute relates to the process whereby a relevant integrated care system (ICS) partner disputes an eligibility decision following an assessment for NHS CHC or CYPCC. For example, in the case of adult CHC this is where a local authority raises a dispute with an ICB following an NHS CHC assessment which has resulted in a 'not eligible for NHS CHC' decision by the ICB. 

Disputes may relate to:

• an initial assessment for NHS CHC or CYPCC
• a re-assessment for NHS CHC or CYPCC following a care package review

There may also be up to 3 stages of a dispute:

• Informal
• Formal
• Independent arbitration

For the purposes of the AACC data set, only formal or independent arbitration disputes raised after an assessment is complete are in scope. Informal disputes which take place before an assessment is complete are not included.

Dispute - formal

A formal dispute raised by a relevant Integrated Care System (ICS) partner following an assessment for NHS CHC or CYPCC. 

A formal stage of resolving disagreements regarding eligibility decisions involving managers and/or practitioners who have delegated authority to attempt resolution of the disagreement and can make eligibility decisions. This stage could involve referral to an inter-agency panel. If the dispute remains unresolved, the dispute resolution agreement may provide further stages of escalation to more senior managers within the respective organisations. See 'NHS All-age Continuing Care inter-agency dispute' definition for more information.

Dispute – independent arbitration

Independent arbitration is a stage of the dispute process that may follow the formal stage if the formal stage has not resolved the dispute. It is applicable to adults under the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. It is the final stage of the disputes process which should normally only be invoked as a last resort and should rarely, if ever, be required. It can only be triggered by senior managers within the respective organisations who must agree how the independent arbitration is to be sourced, organised and funded.

See 'NHS All age Continuing Care inter-agency dispute' and 'Dispute – formal' definitions for more information.

A referral or notification type referring to a case that has changed Responsible Commissioners. When an individual has been found eligible and moves into another ICB’s area, under certain circumstances the ICB in the new area (the receiving ICB) becomes responsible for paying for the individual’s care package. For more information read the Who Pays? guidance.

A decision support tool (DST) is a document as part of a full assessment to record evidence of an individual's care needs to support a multi-disciplinary team (MDT) in determining eligibility for NHS CHC or CYPCC.

An NHS CHC DST is published as part of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

A CYPCC DST is published as part of the National Framework for Children and Young People’s Continuing Care.

These definitions are used throughout the AACC102 care package group in the technical output specification.

A care package is a combination of the services and care provision commissioned for an individual to cover eligible AACC care needs. For example, a care package for an eligible NHS CHC case may include care home services with nursing, therapy services, and equipment.

A personal health budget (PHB) is a method of funding an individual’s care package in which an amount of money is identified to support a person's care needs, planned and agreed between the person and their local NHS team or by a partner organisation on behalf of the NHS (for example, local authority). Since October 2014 it is a right to have a personal health budget for:

• all adults eligible for an NHS Continuing Healthcare home care package. 
• all children and young people eligible for a continuing care package 

The person with the PHB (or their representative) will:

• know up front how much money they have available for healthcare and support (indicative budget)
• be enabled to choose the health and wellbeing outcomes they want to achieve, in dialogue with one or more healthcare professionals
• be involved in the design of their care plan
• be able to request a particular model of budget that best suits the amount of choice and control with which they feel comfortable
• be able to spend the money in ways and at times that make sense to them, as agreed in their care plan.

PHBs can be managed in 3 ways, or a combination of the 3:

• Notional budget - where the commissioner (for example, the ICB) holds the budget but uses it to secure services based on the outcome of discussions with the service user.
• Third party budget - where an organisation independent of the individual and the NHS manages the budget on the individual’s behalf and arranges support by purchasing services in line with the agreed care plan.
• Direct payment - where money is transferred to a person or their representative or nominee who contracts for the necessary services.

Further information about Personal health budgets.

These definitions are used throughout the AACC103 Review group in the technical output specification.

A review of an individual’s care package to determine whether the individual’s needs are being met appropriately, or whether there is any material change in needs that may mean either an individual’s package needs updating, or that an individual may no longer be eligible for AACC. In the case of NHS CHC and CYPCC, if an individual’s needs have materially changed in that they may no longer be eligible for NHS CHC or CYPCC, their eligibility should be reconsidered via a re-assessment by an MDT. 

In the case of FNC the NHS-funded Nursing Care Practice Guidance sets out (paragraph 95, page 24):

"Where there has been a material change in need such that the individual no-longer meets the criteria for NHS-funded Nursing Care, then the individual will no-longer be eligible for NHS-funded Nursing Care and payments will cease."

Therefore, in this scenario a re-assessment is not required and the FNC funding is immediately ceased following the review.

Care package reviews should take place 3 months after an individual has been agreed eligible for NHS CHC, CYPCC, or FNC and then a minimum of every 12 months thereafter. Reviews may also be arranged on an ad hoc basis if a change in needs triggers the need for a care package review outside of the usual 3 and 12-month time scale. Reviews are also applicable to joint funded cases.