Children and Young People Dr P J Carragher Chair of SLWG 6, L&DW

SLWG 6: Recommendations for service configurations for adolescents and young adults with palliative and end of life care needs Future area of development – Children and Young People (including transitions)

Children are not small adults Young adults are not big children Children and young adults are not the same group

Palliative Care for Adults Young Adults/Adolescents Children is not the same thing

Consensus Numerically children and young people (CYP) with life limiting conditions (LLCs) are a small fraction of the number of the total population who have palliative needs 0-25 yrs ?1500 / deaths pa

Modern society Expects adults to die Does not expect CYP to die As a result it is usually much harder for families to even accept that their child has a LLC….that they have palliative and end of life needs

Cancer remains the second largest cause of death in the 1yr – 19yr age group Deaths due to diseases of the - nervous system, - congenital anomalies - respiratory system almost double the percentage of deaths from cancer Increasing numbers of children and young people living with significant chronic illness and disability

The interval between the diagnosis of a LLC and death is usually longer and less predictable in children than adults Traditionally held view in terms of referral to Palliative Care, but changing because of increasing emphasis on CHD, COPD, dementia……….

The adaptation of a CYP to the reality of their LLC takes place at the same time as many other transitions (eg independence, sexuality, employment, maturity)

CYP with palliative needs more often make greater demands on health and social services for a longer period of time than traditionally in adult palliative services (eg a child with a life limiting neurological condition may require both frequent palliative and therapeutic admissions often over >5 year period)

Children with LLCs have health needs related to education that place greater demands on school health services as well as education services per se

Most CYP with LLCs have siblings who are also CYP

The small number of CYP with palliative needs means expertise is not widespread Dedicated facilities are few and are less accessible for remote geographical areas

Young people with LLCs (particularly those with complex neurological disabilities) frequently have incomplete mental capacity – introduces additional burdens on parents, legal and social work systems

Challenges

So how can things begin to move on for Adolescents? Young adults? Children?

L&DW Aims to ensure a comprehensive approach to palliative care based on clinical need and not diagnosis, age, post code, creed or ethnicity

Assessment and review of palliative and EoLC needs Planning & delivery of care for patients with palliative and EoLC needs Communication and coordination Education, Training and Workforce development Implementation

3 development areas that will allow implementation of L&DW for CYP Include progress of SLWG looking into transitions

3 development areas ePCS – adaptation to needs of CYP Palliative Care Pathway for CYP Further developing the role of primary care in CYP’s palliative care

ePCS Scoping potential – define the young palliative population GP held record where specialists can inform on parameters, and where this is lifted straight from the GP e-record Needs paediatricians to prime the record before transition, and there to be some specialists ‘found’ after transition to advise young people/families and GPs…and review by specialists to ensure the correct information is being made available Establishment of GP palliative care registers

The surprise question “Would you be surprised if your patient was dead in 12 months?” I believe if this is applied to CYP/young adults, many with true palliative needs will be missed….so: Within the age group yrs… “Would you be surprised if your patient was dead in 5 years?” This will need specialists to help advise…and a culture change with communication

Palliative Care Pathway for children/young people Good examples are developing Borders Lothians CEN (MCN for children with exceptional health care needs) Cascade these in recommendations so generalists can find a way into appropriate e- advice, and actual advice Integrated assessment and review process - Getting it Right for Every Child (GIRFEC)

Developing the need for primary care in CYP’s palliative care Care near to home – has to be empowered primary care team with specialist nursing and medical advice to back this up Establishment of GP palliative care registers – and in systems to transfer patient info to ALL relevant professionals, and across organisational boundaries OoH period – advice also available to OoH clinicians Working closely with an empowered lead professional

ePCS Palliative Care Pathways for CYP Development of the role of primary care in CYP’s palliative care Transition

“ The death of a child or young person has serious and lasting effects on the parents and other family members, effectively for the rest of their lives. Any attempt to reduce symptoms and to improve the quality of life in the final days and weeks, must not only be good for the child involved but, in the fullness of time, be good for those left behind” PJC Diploma of Palliative Medicine 2003