Better at Home [The Child With Complex Needs]

1. Better at Home[The Child With Complex Needs] Colin Way Nurse Consultant PICU/HDU St Georges Hospital London Chair Paediatric & Neonatal Intensive Care Forum RCN Linda Partridge Director of Programmes WellChild 1

2. RCN Congress 2007“From little acorns” • Paediatric and Neonatal Intensive Care Forum resolution submission • Seconder Mark Whiting • “That this meeting of the RCN Congress urges government to expand and develop resources within the community setting for technology dependent neonates and children” 2

3. The PICU Context • Block PICU beds! • Estimated 6000 children in the UK that are technology dependent • Of this group approximately 140 are dependent on long term ventilation. • It is estimated that this group of children cost around £25.5 million a year to support in the acute care setting [Noyes, 2006] • More cost effective to be at home. £240,000 as apposed to £600,00 in PICU • £155,000 on a children’s ward 3

4. Age of Enlightenment • Technology isn’t just about ventilators • 6,000 technology dependent children in UK [Glendinning et al, 2001] • No large national study to identify numbers of technology dependent children in the community • 25 nursing teams in the NW documented 591 children & young people who were dependent on technology [Kirk, 2008] • Benefits of case management [Brombley, 2008] 4

5. Barriers to Discharge • Medically stable children on LTV spend long periods of time on PICU [up to 2 years or more] • Lack of joint commissioning • Poor management within the health service and collaborating with other services • Complex social issues • Housing problems Noyes 2002 5

6. It’s also the simple things in life Ward rounds which facilitate proactive discharge planning Ward rounds attended by a lead professional with a detailed knowledge of the child MDT discharge planning meetings 6

7. Effects on the Child • Profound & negative impact on the child, young people & their families • Experienced inequity of care • Basic needs for security, attachment, communication, friendship, continuity & belonging were not met • Reinforced feeling of a lack of purpose & significance in their lives Noyes 2000 7

8. It’s all about children with complex health needs! 8

9. Not to mention the Environment We try our best! Visits outside PICU Attendance at the hospital school De-intensifying the environment Sick children take priority 9

10. In summary the debate highlighted • Lack of community children’s nurses and other resources to support children at home • Need to foster respite care for children with complex and special needs • The cost implications of failing to enable timely discharge from children's intensive care units • The negative emotional and psychological distress and impact on children and young people, as well as social and financial strain on parents 10

11. Case History Short History Activities of daily living 6 month old girl First child Admitted to PICU December 2007 with aspiration pneumonia Required ventilation Failed extubation on two occasions Diagnosed with unknown neurodegenerative illness [Spincal Muscular Atrophy] Tracheostomy Unable to swallow or feed orally [gastrostomy] Unable to breath for herself [tracheostomy & ventilator] Generalised muscle weakness [specialist input for physical & cognitive development] 11

12. Issues Parental Professional • Time to obtaining a definitive diagnosis • Uncertainty about “life limiting illness” • Getting to know their child with a tracheostomy and ventilator • Balancing acute illness with wanting to get home & back to normality as quickly as possible Transitioning Sophie out of PICU as quickly as possible Identifying responsible PCT & head of contracting Identifying key workers within community & hospital Training staff 12

13. Transitioning to independent sector Priority & barrier Solution To discharge Sophie back home as quickly as possible Training of parents & carers • Referral to a transitional facility with nursing, medical & other expertise • Outreach visits from PICU & community staff • Joint working with local health & social care services • Ability for care staff to be trained by CCN’s/Nurse Consultant at Chase • Transition to Chase 8 weeks and home in 4 weeks 13

14. Power to the CCN? • Preparing nurses to care for children at home & community settings [RCN, 2009] • A child’s right to care at home [RCN 2009] • Healthy lives: Brighter futures: The strategy for children & young people’s health [DoH;DfCSF 2009] • Better at Home Campaign RCN/WellChild • Clear strategy to address deficiencies & patchy provision of community children’s nursing services to enable 24 hour 7 days a week service [House of Commons Select Committee 1997] • Development & recognition of an agreed education & competency framework for children’s nurses working in community settings • CCN services available to all children & young people 14

15. Children and young people with complex health conditions.……..the involvement of WellChild? www.wellchild.org.uk 15

16. Bring to the debate? • Another perspective • Role of a charity • Listen to families – ensure they have a voice • Work with others to identifying ways to improve the families experience – hospital and community • WellChild Children’s Nurses – ‘key worker role’ 16

17. What do families want? • Seamless journey from hospital to home • Good experience of discharge • Everything in place at the right time • Parents & staff working together • Involvement & participation • Confident & competent • Hospital and community approach • ‘Pulling together’ services • No ‘one fit all’ approach 17

18. One family’s experience Sam - rare metabolic disorder prone to sudden & unpredictable illness Discharge not a positive experience Parents - isolated and vulnerable, not prepared for crisis 12 month period -20 A&E visits & re-admissions Rare complex condition - recounting the medical history became distressing – “reliving it again & again” The WellChild Nurse worked with A&E staff - developed a complex needs summary (IT system) The WellChild Nurse worked with family Family now better prepared & more confident – still A&E visits but fewer admissions 18

19. What families say………. “People don’t appreciate that home life goes on even when your child is in hospital, even things like paying bills still need to be dealt with” “After waiting two years to go home we were lucky..... an old couple died and we got their house” “The staff seemed to just stop talking to me after a while – we were there so long I think they just ran out of things to say” “I seemed to spend all my time feeling guilty – guilty if I went home to see my other child, guilty if I didn’t go home, guilty for wanting to do something different……” 19

20. Realistic – “no magic wand” 20

21. RCN/WellChild – ‘Better at Home’ Campaign • Timely, high quality and effective care to be delivered in the home where possible. • Packages of care which co-ordinate health, social care and education in a way that meets their individual and ongoing needs of the children and their families • The government’s commitment to support greater financial investment in the provision of community children’s nurses. 21

22. Mapping – 186 children inpatient stay over 3 months 22

23. Time in Hospital 23

24. Key Barriers Lack of staff to support parents and families Delays in sorting out and funding for care packages at home Availability of equipment and housing Availability of social care and psychological support 24

25. So Far……….. First phase – England EDM tabled by Tom Clarke MP - 83 MP’s signed Issues preventing discharge – mirrored aims Family experiences – key to campaign Support from other organisations and professionals MP Reception - March 2009 Moving into Scotland Wales & NI – Spring 2009 Still lots to do but please support the campaign…… 25

26. Thank you 26

27. Any questions 27

28. Sponsor WellChild! London Marathon April 2009 http://www.justgiving.com/colinway 28