Making Life-Limited Children Count: National Palliative Care Minimum Dataset and Services Mapping Initiative for Children and Young People
The need for a UK mapping Initiative
Services for life-limited children and their families are known to be patchy, but it is difficult to determine what and where the gaps are in service provision. It has been difficult to establish accurate data on the numbers of children who have life threatening/life limiting conditions and where they live within the UK. Families state that they don’t know what is available to support them, whilst fragmented services are unable to develop integrated working practices. Understanding the numbers of children and young people with these conditions is essential for the strategic development of services so that the needs of children and families can be appropriately met.
What is the National Palliative Care Minimum Dataset and Services Mapping Initiative for Children?
This new initiative has been developed to help identify the numbers of children and young people who have either a life-threatening or life-limiting condition within the UK, and to find out what services are available within each local area to meet their needs. The initiative is being facilitated by partnership working between the ACT (Association for Children’s Palliative Care), ACH (Association of Children’s Hospices) and the NHS.
Who is it relevant for?
· Health professionals that will see children and young people at the point of diagnosis of having a life threatening or life limiting condition and services within the statutory and voluntary health care sector that provide care and support to this group. E.g. community children’s nursing teams, children’s hospices, palliative care services.
· Those responsible for strategically implementing the guidance from the Department of Health’s Better Care: Better Lives report, Children’s Palliative Care Network Leads, and Care Services Improvement Partnership (CSIP) Network leads, and health and local authority commissioners.
In order to make this mapping initiative work, the Regional Children’s Palliative Care Networks will need to play a key role and commit time and resources to this process.
How does it work?
A Minimum Data Set (MDS) has been designed to find out information that assists health, education and social care agencies in providing the right services and support for children and young people with these conditions. The MDS and services questionnaires have been developed and piloted in Merseyside and Cheshire by a team from the Merseyside and Cheshire Children and Young People’s Palliative Care Clinical Network, led by Dr Lynda Brook. The MDS is accompanied by a series of questionnaires to capture information about the type and level of services available in the statutory and voluntary sector in each region. This information is collected locally, through provider organisations within networks, and collated to provide each network with accurate local information for commissioning and quality assurance.
What is the Minimum Data Set?
The Minimum Data Set (MDS) outlined below is a list of key information that is collected when a child or young person accesses a service with either a life-threatening or life-limiting condition. These items of information are collected upon referral to service and when a child dies who is already receiving care through a service. Each Children’s Palliative Care Network needs to meet the requirements of the Data Protection Act. It needs to establish the processes for collecting, storing and managing the data collected and these must be agreed with the local NHS Caldicott Guardian and Data Protection Officer.
For all children and young people younger than 24 years on referral or death; include all referrals to a service regardless of postcode or PCT of residence.
The Minimum Data Set
When patients are referred to a children’s or young people’s palliative care service:
1. Service ID
2. NHS number
3. Date of birth
4. Gender
5. Ethnic group
6. Postcode
7. PCT code
8. Primary diagnosis (Coded by WHO International Classification of Diseases (10), ACT group and organ system group)
9. Source of referral
10. Date of first assessment
11. Date of referral
12. Date of diagnosis
13. Life-threatening condition Y/N
14. Life limiting condition Y/ N
15. Date of recognition of life-limiting condition
16. If over 16 whether living alone
17. Referral accepted by the service? Y/N
When a patient dies:
All as above plus
1. Date of death
2. Place of death
3. Cause of death
How is this different to other datasets?
Recently there have been a number of national data collections taking place. For example the National Child Health, CAMHS and Maternity Service Mapping Exercise commissioned by the Department of Health. This mapping exercise aims to create an inventory of all dedicated child health services, specialist CAMHS services and maternity services provided in England and the investment in them and is an annual collection of aggregate data.
In comparison the National Palliative Care Minimum Dataset and Services Mapping Initiative for Children and Young People collects data items that are important clinically in helping us to understand more fully what is happening with children and young people specifically with a life threatening or life limiting condition. This dataset requests services to collect individualised patient identifiable data that will be collected monthly within each regional area and over time provide a detailed picture of particular trends and changes.
What do we hope to achieve in implementing this across the UK?
We aim to develop a secure national database to collate data from each region. This will provide us with a national comparison of numbers of affected children, information on what types of conditions are prevalent, and what types of services are available within each area. A national services directory will also be available online.
How will this help children and young people with these conditions?
The standardisation of data collection and service mapping will enable a joined-up picture to be produced of the numbers of children with life-limiting and life-threatening conditions across the UK, as well as a comprehensive map of the national provision of services.
Primary Care Trusts (PCTs), Children’s Trusts and local authorities need to be well informed about the needs of children who require palliative care within their local population so that they can improve future service provision. This means that they need to identify the number of children with life-threatening and life-limiting conditions including those with disabilities and continuing complex health care needs and find out where services overlap and where there are gaps.
What has been achieved so far?
By the end of 2008 more detailed information about the numbers of life-limited and life-threatened children and young people living within Merseyside and Cheshire should be available as well as a comprehensive online directory of services available.
ACT is working with statutory and voluntary health sector providers in raising awareness of how other regions can use the MDS and Services Mapping approach in their area. ACT is advocating that all Children’s Palliative Care Networks start exploring how they can implement the same system in their area within the next 18 months.
How can you get involved and find out more?
The use of the MDS needs to be implemented at a network level. Each network has to establish how it will implement and manage the system in its area. Network leads need to assess how data will be collected, managed and stored, the clinical leadership that is available and which services need to contribute data, where they are and how they can become involved. You can help us by ensuring that this is on the agenda at your network meetings and that a project team is set up to take forward the work within the network. Once a network is keen to proceed further support and information about the next steps can be provided through ACT.
You can download a leaflet about the Mapping Initiative here.
To find out more you can contact the ACT Project Manager, Sonja Ezergailis on 01248 600214 or email
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