advancing respiratory care for children and young people ...€¦ · co–morbidities: bone density...
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Advancing Respiratory Care for Children and Young People with Complex Medical Needs
@apcpresp@TheACPRC
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Care of Children and Young People with complex medical needs in the acute setting
Jemma Mears
Background……The story so far
• Medical and Technological advances in Healthcare over the last 20 years has seen a sharp increase in the numbers of children surviving with life limiting or life threatening conditions.
• numbers of children and young people in a variety of settings with complex medical needs…..
who, with their families will need support from health, education and
social care continuously or at times throughout their life.
(Council for disabled children, 2017)
Background……The story so far
• Better Care, Better Lives (DH, 2008) informed by the independent review of Children's Palliative Care Services noted significant challenges faced by service providers and commissioners due to the ….
“change in profile of children and young people (YP) with life threatening or life limiting conditions”
Described as…
Impact…….
Children/YP with Congenital or Acquired Multisystem DiseaseChildren/YP with Severe neurological/neurodegenerative conditionsWith marked functional impairment and/or technological dependence
High utilisation of health and social care resources Prolonged/frequent hospitalisation
Multiple surgeries Multiple specialty/professional involvement in a variety of settings
Actual Numbers…??In the US Approx. 12-18% paediatric population identified as having complex health care
needs (Cohen,2011).
Chiang et al, (2017) states that children with complex medical needs account for 10% of all paediatric hospital admissions and ¼ experience readmission within 30 days post d/c.
Less clear in the UKEstimated 800,000 children in the UK have a disability. (Department for Works and
Pensions, 2012)
2016 - Estimated the number of children and YP with complex health care needs by the numbers of statements/EHC plans in specialist placements to be around 117,900 (Council for Disabled Children and the True Colours Trust, 2017)
Actual Numbers ...??UK data• Subgroup data – LTV population
• Medical literature demonstrates a significant rise in children with technological dependence (Wallis et al, 2010).
• “Breathe-on UK” PROM study - children on LTV (2012) – 46% increase in children receiving tracheostomy ventilation in UK.
• As part of a PIC CRG stakeholder engagement exercise (NHS England, 2013)- Length of hospital stay from identification to discharge was 7-9 months.
- 80-100 new onset tracheostomy ventilated children presenting in PICU each year.
- Increasing numbers of children on NIV (approx. 1000 -1300) under respiratory follow up.
- 250-275 Tracheostomy ventilated children managed in the community.
What does that mean for an Acute Physiotherapy Service?...
Clinical Management
Discharge Planning and Training
Ongoing support beyond discharge
Hospital to Home
Number of attendances to ED and hospital admissions
- Recurrent chest infections - High incidence of respiratory complications and compromise - multifactorial (Proesmans, 2016).
- Planned admission: simple procedure or extensive surgery
- First admission
Prolonged hospital stay: PICU and ward environment
Can be the sickest group of patients we manage– CVS instability, HFO, Nitric, Acute on chronic respiratory issues
Illness and premature death occurs most frequently as a result of compromised pulmonary function and associated respiratory infections (Winfield et.al, 2014, Boel et.al, 2019).
Co–morbidities: bone density issues, clotting, scoliosis, contractures, skin integrity issues
Balance of treatment…Parallel planning – Family Liaison/chaplaincy
Vulnerable cohort – treatment and management challenging but equally rewarding
Streamline care – Close MDT/family working/local teams
Clinical Management
• Increasing number of patients on general caseloads - Increased Stable/established LTV pts. waiting for care packages/establishment of home environment
- Preoperative management- optimise chest
- Post Operatively – acute/normal physiotherapy regime – reduce LOS and facilitate well being and d/c
• Fragile and complex patients – can be very unstable - Excellent clinical skills and expertise
- At critical times to treat this level of complexity and acuity
- Think outside the box…..push boundaries (complex baseline physiotherapy interventions)
- Family Involvement - Parents often experts in child’s care (Rennick et al, 2019)
- Holistic Care
• Often get called ‘out of hours’ or during an acute respiratory deterioration
Clinical Management…The Impact
• New ways of working • Development of new teams responsible for these children
• New pathways to support and navigate to discharge
• Bedside physiotherapy plans
• Standardise care
• Investment • Training, support and up skilling of physiotherapy staff
• Training/education/support of nursing staff – bespoke and formal
• Buddy system and training framework
• Equipment – Loan machines, try new devices, seating etc..
• Skill mix• Development of band 4 practitioners
Clinical Management…The Impact
Physiotherapy session on PICU
Early identification of need- Establishment of physiotherapy treatment/management regime
Could be……PICU LTV patient with a proposed care package OR a
Child with Global Developmental Delay recovering from prolonged acute admission
- What treatment ?
- What Equipment?
- Who will carry out respiratory physiotherapy?
- Who will teach them?
- Needs of the child and family ? – burden of care, access
- Baseline – Escalation Plan?
- Care package?
- What community support/local services are available?
To get this child and family home
Discharge Planning and Training
Commissioning • Develop links with CCG – ensure that ALL the physiotherapy needs of the child will be covered in the
Continuing Care Assessment https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs- funded-nursing-care
- Specific collaborative document
• No Continuing Care package – Source equipment and consumables in time for d/c
Training • Carer and family training as part of care package
• Parents/Caregivers for home independent treatment
• Theory and practical components
• Competency Framework sign off
• Develop a physiotherapy plan – escalation management
• Provide ongoing training and yearly competency reviews
Collaborative Working• MDT working/Pathway planning/Community Liaison/Multi Agency…………Holistic approach
Discharge Planning and Training
Can be a long journey to discharge….
• Recruitment and retention of carers on care packages
• Difficult for family life and dynamics
• Inpatient caseload management and non clinical activities
Moving forwards….
• Develop better pathways
• Work collaboratively across organisation boundaries to get these children home
• Develop a dynamic physiotherapy workforce to manage these children wherever they are
Discharge Planning and Training ….The Impact
• We continue to review …
- Annual review of child’s ongoing Physiotherapy needs
- Review carer’s annually on care package
- Review via LTV/Specialised Respiratory clinics
• Set up a Respiratory outpatient service
- Review/adapt physiotherapy treatment plans
- Review parent/carers treatment technique
• Review during subsequent admissions
Ongoing support
In Summary….
• Due to medical and technological advancements there are increasing numbers of children with complex medical needs in the UK
• Discussed our experiences of managing these complex children from an acute physiotherapy perspective
• Move towards getting these children home sooner…..
supporting the child and family through the next stage of their
journey and enable them to live their best life
