Using the Children S Continuing Care Tool

CCHAT - Children’s Continuing Healthcare Assessment Tool

In 2007 the Scottish Government noted the challenge posed by a growing number of children and young people with complex and enduring healthcare needs requiring multi-agency support. Developments in clinical care have improved the outlook for many with life threatening conditions, and medical technology now makes home care feasible for those who just 10 years ago might have died or remained in hospital (Scottish Executive 2007 p.10). However, for a small number of children, life at home is neither safe nor sustainable without intensive support. In some cases this requires a team of carers to help families provide non-stop one-to-one or even two-to-one care. These children need ‘continuing care’. Such intensive support is a huge challenge for child and family, and for all those who organise, manage and provide the service.

Children’s Continuing Care is where specialist assessment and a multi-agency package of care is needed to support the family caring for a child or young person with multiple, complex and enduring health care needs due to disability, accident or illness. The child requires:  An intensity, complexity and continuity of care that cannot be met by local universal services, and cannot be sustained by the family without a bespoke package of support.  One-to-one or two-to-one care for all or part of the day, to ensure the safety of the child, or that of other people, and allow educational and social inclusion.  Collaborative support from two or more agencies to assess, fund, provide and monitor a care package. Adapted from DOH 2005 & 2008 p.22

Children’s continuing care packages are small in number but resource intensive. Packages are costly and can rarely be supported from existing hospital of community budgets. Commonly a business case is made for funding, the package is specially commissioned, and either staff recruited and trained or the package put out to tender from commercial agencies. These processes can take months or even years. It is crucial that these children are identified early in their hospital stay so as to avoid extreme discharge delay.

Seven stages can be identified in establishing a new continuing care package. These are:

1. Identification of the child who will need continuing care support. 2. Early notification to the local health board who will need to fund and provide care. 3. Assessment of the needs of child and family by a multi-agency team. 4. Decision making as to the child’s eligibility for continuing care and the amount of support to be provided. There may also be decision making around responsibility for funding and providing the care. 5. Planning the care package. 6. Implementation. 7. Evaluation and review.

The CCHAT Tool CCHAT is a tool to be used at the Decision Making stage of the process, alongside a comprehensive assessment of child and family wishes and needs, and professional judgment. The purpose of the Tool is to support professional decision making by giving an ‘objective’ estimate of the number of hours that health should contribute to a care package. The Tool focuses purely on the health needs of the child. CCHAT assumes that the health input is provided to help the family manage any risks associated with the child’s health conditions and interventions. It does not consider the ability of the family to meet those needs or the needs of others in the household. These factors must be identified and addressed through the

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comprehensive assessment, and services or funding provided by Social Work, Education and other agencies.

Family: What do Multidisciplinary they want? Team: What is How needed? much support? Commissioner: Decision support Safe, reasonable, tools. consistent provision

As illustrated above, CCHAT is just one component of the decision making process. Professional judgement, rationally considered and recorded, must always take precedence over the CCHAT estimate.

How was CCHAT developed? The starting point for CCHAT was assessment tools used in other parts of the UK. The Team considered examples from Leeds (also used as the assessment tool for the national Long Term Ventilation Group), Bradford, Swansea, Rotherham and others. Many areas were found to use variations on either the Bradford or Leeds tools. The English ‘Framework for Children’s Continuing Care’ (Department of Health 2010) was also considered though this focuses on eligibility for continuing care rather than ‘how much’ continuing care. It was found that most tools gave consistent assessments for children on long-term ventilation but failed to recognise the care demands and support needs associated with other conditions, such as complex neurodisability.

A small team of nurses in Lothian developed a generic set of descriptors to describe the risks and support needs of children with complex needs. Scores were then allocated to the descriptors. Over many months both the descriptors and the scores were tested and adjusted to reflect professional judgements about the hours of care allocated to continuing care packages. This testing was undertaken in 5 health board areas using information from 22 cases. No patient identifiable information was collected in the process. The tool was also checked for inter-rater and test-retest reliability. Once the tool was found to give useable and consistent results it was built into a spreadsheet to automate the calculation.

CCHAT is ‘work in progress’. It is designed to reflect the collaborative continuing care decision making process in Lothian. It was found to be less useful in Board areas where Health, Social Work and Education contributions are separately assessed and provided. It would be possible to change the scoring in the spreadsheet to reflect variation in local conditions. CCHAT is simple to use but users need to understand its purpose, the descriptors and the decision making process. Assessment works best when undertaken jointly by a professional who knows the child and family well, and one who knows CCHAT and the local continuing care process.

Using the tool The CCHAT Tool has two components, the CCHAT Assessment used to collect information from professionals who know the health needs of a child, and CCHAT Scoring which uses the assessment to estimate the support needed. Both documents are locked so that information can only be entered, if done on a computer, in certain text or tick-boxes. The Tab key, keyboard arrows or mouse can be used to navigate between the boxes. A left mouse click will check a tick-box.

Both components are very easy to use and, if information is to hand, can be completed within 15-20 minutes. The documents are provided as Templates. Each time you alter a template you will be asked to save it as a separate Word or Excel document. The original template will remain unaltered for future use.

The CCHAT Assessment is a Microsoft Word form that is completed jointly by two independent Assessors with knowledge of the child’s healthcare needs, and of the assessment process. These might be a lead member of the child’s care team and a professional involved with the planning or delivery of the continuing care service. The form can be completed electronically or printed and completed manually. The information is confidential and must be stored and transmitted in accordance with NHS eHealth Security Policies.

The Assessment has nine sets of descriptors. The Assessors agree on the one from each set that applies to the child, as in the example below.

Tick Office 8. Medication: Tick one use

Low Risk Support appropriate to age & development level. May require prescribed medication regimes and occasional emergency medication. Prescribed medication regimes, which may include regular use of Moderate emergency medication. Administration by a parent or carer specifically Risk trained for the task, working to agreed protocols. Complex medication regimes and protocols to ensure effective symptom control with a fluctuating, unstable or deteriorating condition, requiring High Risk frequent nursing reassessment. Chiefly associated with end-of-life care. Notes:

The Assessment also records information on the current and proposed continuing care and respite provision. Information is collected in a format that will allow for variation in the frequency of provision. For example: Overnight care, 10 hours every night of the year will be shown as in line 1 below. Support during the school day for 6 hours in term time may appear as line 2. This detailed information can identify gaps in the continuity of care for the family and helps in calculating the cost of a care package.

3.1 Current care package: No current package Hours per Type of care (note if day or night eg overnight Provider Days per Weeks 24hr (eg health, social work) week per year care in home, school support, respite care) period 1. Overnight care from trained carer in home Health 10 7 52 2. Support in school day Education 6 5 40 3. Playscheme holiday support Social work 6 5 4

The completed Form is forwarded to a Continuing Care Manager for scoring.

CCHAT Scoring. This is a Microsoft Excel spreadsheet used to estimate ‘hours of health support’ from the Assessment above. It must be completed on the computer to generate a score. On receipt of an Assessment Form the Scorer simply checks the corresponding boxes on the Score Sheet. The ‘hours of health support’ is calculated automatically and shown in the blue highlighted section at

the bottom of the assessment (see illustration below). The two pages of the score sheet can then be printed.

Users need to be familiar with the basics of Excel, including navigation between and around spreadsheet pages, simple data entry and renaming sheets. It is protected so that data can only be entered in PINK text boxes or tick boxes. The spreadsheet has five identical assessment pages. Ideally a child should have his/her own spreadsheet to allow repeat assessments over time. Remember to save any changes and store the spreadsheet securely in accordance with NHS eHealth Security Policy.

of a completed CCHAT Score Tick boxes

6 6. Communication and social interaction Tick one One only

6.1 Low risk Communication appropriate to age and development level. May use assistive devices & aids. FALSE Child understands some everyday conversation but may require additional support to participate & communicate with 6.2 Moderate risk others eg. Prompting, choice boards, signing, communication aids. TRUE Child has great difficulty participating and communicating basic needs & requirements. Support always needed from 6.3 High risk carers with specific skills and experience. Vision or hearing may be very limited. FALSE 7 7. Maintaining the child's safety : One only

Appropriate to age & development level. Child is alert & orientated. May require predictable routines and/or have minor 7.1 Low Risk problems with behaviour & learning. FALSE Requires planned observation & support from a specifically trained carer, to ensure safety. May include non-waking 7.2 Moderate Risk supervision / intermittent support at night to respond to alarms or sleep disturbance. FALSE Needs supervision in day and waking 1:1 support during the night from a specifically trained carer, to meet needs 7.3 arising from his/her underlying medical condition/s. TRUE High Risk 1:1 Support in day and waking 1:1 support at night from a specifically trained carer, to meet care needs arising from 7.4 underlying medical condition/s. Evidence of a high level of risk arising from intense and/or unpredictable care requiring obligatory 1:1 support. FALSE 8 8. Medication: Tick one One only Support appropriate to age & development level. May require prescribed medication regimes and occasional emergency 8.1 Low Risk medication. TRUE Prescribed medication regimes, which may include regular use of emergency medication. Administration by a parent or 8.2 Moderate Risk carer specifically trained for the task, working to agreed protocols. FALSE Complex medication regimes and protocols to ensure effective symptom control with a fluctuating, unstable or 8.3 High Risk deteriorating condition, requiring frequent nursing reassessment. Chiefly associated with end-of-life care. FALSE 9 9. Additional care demands Obligatory 1:1 overnight care for a child with central hypoventilation syndrome or similar who otherwise scores as "age appropriate". 9.1 Not for permanent ventilator dependence. FALSE Transitional support from hospital to home, only for child needing continuous, sustained & complex care (usually ventilator dependent). 9.2 Support to enable family to gain confidence in care at home. Review within 6-weeks & phase out within 3 months of package start. FALSE

9.3 End of life care: Intensive end of life care to allow child to return or remain at home. Review within 6 weeks. FALSE Pre-school child needing continuous, sustained & complex care, where family will have difficulty sustaining care in the home. Only 9.4 for a child who otherwise scores as "age appropriate" on most measures. FALSE Estimate of health support needed Child Date assessed 75 (hours per week)

The Score

Using the CCHAT Score. The Score should be used in a multi-agency commissioning team meeting to inform a resource allocation discussion. As noted above, CCHAT is just one component of the assessment and decision making process to be considered alongside the assessed needs of child and family, and the professional judgements of the care and commissioning teams. The CCHAT estimate can be used to structure the resource allocation discussion and give a clear account of the reasoning behind a decision.

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