PARALLEL PLANNING IN CHILDRENS PALLIATIVE CARE CAT BROWNPALLIATIVE

PARALLEL PLANNING IN CHILDREN’S PALLIATIVE CARE CAT BROWN-PALLIATIVE CARE NURSE SPECIALIST BRADFORD TEACHING HOSPITALS NHS FOUNDATION TRUST OFFICE: 01274 365296 MOBILE: 07971 398671 MONDAY-FRIDAY 8 -4

WHAT IS PARALLEL PLANNING? �PLANNING FOR LIVING AND PLANNING FOR DYING �THE DEVELOPMENT OF PLANS THAT ALLOW FOR UNPREDICTABILITY IN THE COURSE OF THE CONDITION �PLANNING FOR DIFFERENT/ALTERNATIVE CIRCUMSTANCES �HOPING FOR THE BEST, BUT PLANNING FOR THE WORST, JUST IN CASE

BROACHING PALLIATIVE CARE CAN BE DIFFICULT �WORRIES ABOUT CHILD AND FAMILY ANXIETIES - This means my child is going to die - Drs and Nurses are giving up on my child - Feelings that their child isn’t worth it - Cultural perception of illness/death

BROACHING PALLIATIVE CARE CAN BE DIFFICULT �WORRIES ABOUT OUR PROFESSIONAL PRACTICE - It is our failure - We are giving up - We might be wrong - We might be doing the wrong thing - We might be criticised

BROACHING PALLIATIVE CARE CAN BE DIFFICULT �Lack of understanding of palliative care and what it can offer �Uncertain when to refer or who to �Not having the communication skills to have these difficult conversations �Multi-regional paperwork i. e. LOTA/RESPECT Forms

SO WHY SHOULD WE DO IT? �Support children and families when they have a condition which is not, or may not be, curable �Think about aims of treatment/intervention �Support choices in: - place of care - intensity and extent of intervention �Allow planning for different eventualities

CASE STUDY �Antenatal diagnosis of HRHS, PA, TA, Critical PS �Parents decided on comfort care �Referred to Hospice by Cardiology Team �Family accessed support, completed a birth plan and CYPACP �Transferred to hospice after birth �Baby fed, thrived and didn’t take expected path �Parallel planning had been discussed and parents wished to take baby home

CASE STUDY CONTINUED �Baby continued to thrive and gain weight �Reviewed by cardiologist who felt an intervention was appropriate �Understandably family had lots of emotions to digest �Supported by hospice team to process their child’s new prognosis �Parent’s decided that they no longer wanted hospice input but participated in a 6/52 baby massage course through the hospice

CHILD & YOUNG PERSON’S ADVANCED CARE PLAN (CYPACP) “A formal care plan that includes details about: the child or young person’s condition, decisions made with them and their parents or carers (for example about managing symptoms), and their wishes and ambitions. This plan is a core element of their palliative care. ” End of life care for infants, children and young people: planning and management (NICE - Dec 2016)

DIFFERENT VERSIONS OF THE CYPACP • Advanced Care Plan (with Re. SPECT) • Legacy Care Plan (without Re. SPECT) • Both available in • • • PDF (Printable) Word (Macro) Word (Non-Macro)

RESPECT AND LOTA Re. SPECT Recommended Summary Plan for Emergency Care & Treatment • Standardised - All disciplines - All Ages • Don’t get hung up on it • Not really a new idea in paediatrics • Modified / Limited Resuscitation • For our purpose – good summary of management in an emergency (LOTA) Limitation of Treatment Agreement • Some areas are yet to adopt Re. SPECT and still use LOTA • LOTA - Does what it says on the tin • Not ‘instead of’ CYPACP • Summary of: - Management of Significant Deterioration (non-arrest) -Management of Cardiorespiratory Arrest

WHO, WHAT, WHERE? • Children’s Palliative Care (CPC) is delivered by various providers, including primary, secondary and tertiary services, community services and hospices. • CPC can be commissioned from the NHS providers working collaboratively. • CPC is also provided by the voluntary sector (including children’s hospices), although there is geographical variation in this provision • The Yorkshire & Humber Cardiac Network feeds into four hospices: - St. Andrew’s (Andy’s) - Martin House - Bluebell Wood - Forget Me Not � Planning is key, if in doubt contact services early so they can respond swiftly to benefit the child and family as soon as possible

SUMMARY �MDT/Collaborative approach �Use specialist services i. e. CNS, Hospice �Joined up working gives families better outcomes �Resources i. e. Together For Short Lives, Networks �If in doubt ask, always happy to help

USEFUL LINKS �http: //cypacp. uk/ �https: //www. appm. org. uk/ �https: //www. togetherforshortlives. org. uk/ �https: //www. nice. org. uk/guidance/ng 61 �https: //www. forgetmenotchild. co. uk/ �https: //www. martinhouse. org. uk/

Thank you for your time……. . Any questions?