Patient; AH : Date

Alder Hey

Eaton Road

Liverpool L12 2AP

Telephone: 0151 228 4811

Macmillan Team Office: 0151 252 5187

Mobile phone 07881 788903

Date: 5th February 2008

Liverpool Emergency Care Plan for Children with Complex Healthcare Needs

The Liverpool Emergency Care Plan for Children with Complex Healthcare Needs has been developed by an expert working party representing Alder Hey Specialist Palliative Care team, Liverpool PCT, Liverpool School Health, Liverpool Social Services and Liverpool Education.

An example Liverpool Emergency Care Plan is attached for consultation and we very much welcome feedback both positive and negative to ensure that this project is safe and effective.

What is the Liverpool Emergency Care Plan?

  • The Liverpool Emergency Care Plan is a multiprofessional document designed to provide simple, concise, accurate and up to date information to support children who have complex health needs including palliative care in the community setting.
  • The documentation is designed to ensure that relevant information on possible health related problems, together with an appropriate emergency management plan, is available for staff caring for the child at all times. This will allow the child to access school and other activities as appropriate whilst parents, carers and professionals are confident that those caring for the child are aware of what actions should be taken if the child’s health deteriorates suddenly.

Why is the Liverpool Emergency Care Plan needed?

  • Participating in education and social activities is an essential component of the Every Child Matters agenda; enjoy and achieve, make a positive contribution. Some children have complex health care needs which make it more difficult for them to access school and social activities unless those caring for them are able to meet these needs.
  • For children with the most severe health needs, including those who are receiving palliative care meeting these healthcare needs includes planning for an unexpected change in the child’s condition. Such an emergency care plan is needed to be available at all times so that the child can access education and social activities safely.

How will the Liverpool Emergency Care Plan work?

  • It is envisaged that only a small proportion of children, predominantly attending special schools will require a Liverpool Emergency Care Plan.
  • The potential need for a Liverpool Emergency Care Plan will be identified by the child’s consultant – in the first instance this will be children known to the Alder Hey Specialist Palliative Care team. However if the project is successful it may be rolled out more widely according to need.
  • The consultant will arrange to meet with the family and discuss the need for an emergency care plan and what it should contain.
  • For some children discussion of the emergency care plan may include discussion of cardiopulmonary resuscitation. In occasional situations where a child has a serious life threatening and incurable condition providing aggressive resuscitation may not be appropriate or in the child’s best interests. This is never a decision that is undertaken lightly and meticulous assessment of the situation, exploring all possible options and considering the views of all those who have an interest in the care of the child will be undertaken before any decision is made. Furthermore the decision must be reviewed regularly and when the child’s needs change.
  • In those occasional circumstances when providing cardiopulmonary resuscitation is not appropriate it is imperative that a clear plan is in place so that carers are not expected to assess a situation or make decisions beyond their individual level of competency and experience. Instead a clear plan must be in place regarding exactly what actions should be taken, including providing comfort measures, and who should be contacted urgently for advice and support. Ensuring that this detailed information is available when it is needed is a key role of the Liverpool Emergency Care Plan
  • Following this consultation the emergency care plan will be drafted and discussed with the family.
  • Once the family are happy with the content of the emergency care plan it will be shared with others who have an interest in the care of the child. This may include key professionals such as the GP or other consultants and other members of the family as appropriate.
  • Once the Liverpool Emergency Care Plan has been ratified it will be signed by key individuals and copies sent to key settings; home, school and hospital.
  • These protocols have been developed by all concerned with the patient’s management and welfare, including patient, parents and carers.
  • A management plan of this type is obviously quite different from that for an otherwise well child falling ill at school.
  • For the maximum benefit of the child it is most important that all concerned are aware of this plan and co-operate with it. Failure to co-operate may well cause the child and family unnecessary distress.

Use of the Liverpool Emergency Care Plan

  • Use of the Liverpool Emergency Care Plan will be supported by an education and training package to ensure that it is accessible when needed and that it is updated regularly
  • The Liverpool Emergency Care Plan will be updated at a minimum of every 3 months. Any copy of the Liverpool Emergency Care Plan more than 3 months old will no longer be valid.
  • Guidance will be available regarding safe storage of the Liverpool Emergency Care Plan including that out of date copies are identified, crossed through and archived appropriately
  • A list of where copies of the Liverpool Emergency Care Plan are held is included in the care plan itself at the end of the document

Contents of the Liverpool Emergency Care Plan

  • A front sheet including “logos” from partnership organisations, clear documentation of the start date and expiry date, and details of the child including a photograph
  • A resuscitation sheet for all children. This will document full cardiopulmonary resuscitation in language appropriate for non healthcare professionals except in the occasional situations documented above.
  • A seizure management sheet if appropriate
  • A modified paper version of the Liverpool Information For Emergencies (LIFE) form already in use in Alder Hey. This includes key healthcare information required by ambulance crews and A&E services. The modified document also contains any specific ambulance directives
  • A symptom management plan for those children for whom this is appropriate. This will be written in simple language appropriate for the non healthcare professional or carer
  • An “other essential information” sheet outlining other key information particularly around communication
  • A list of where copies of the Liverpool Emergency Care Plan care kept

Consultation process

  • Following “sign off” by the working party the plan is to share the document with PCT and Alder Hey Solicitors
  • Once this initial review is completed the documentation will be sent for formal consultation to
  • PCT
  • Local Authority Education and Social Services
  • Ambulance Services
  • Police

Pilot 2008

There is a clear need for the Liverpool Emergency Care Plan and for a small number of children this need is immediate and there is no alternative. For these children the Liverpool Emergency Care Plan is being piloted from January 2008. The results of these initial pilots will then be available to inform the formal consultation process.

Dr Lynda Brook

Macmillan Consultant Paediatric Palliative Care

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