1. Health Education Northwest Integrated Care Demonstrator Site Developing a Carer Skills Passport for parents and carers of children and young people with complex long term conditions

2. Health Education Northwest Integrated Care Demonstrator Site Children with complex long term conditions 2% of the childhood population 10% of hospital admissions 26% inpatient days 40% of hospital costs Prevalence increasing by approximately 2.5% annually

3. Health Education Northwest Integrated Care Demonstrator Site Children with complex long term conditions Considerable support to remain well and lead active lives – Dependency on enabling technologies e.g. gastrostomies, tracheostomies, cough assist – Complex medication regimes often 10 or more medications by various routes Care needs often cannot be met by parents alone – Continuing care packages for home and school – Planned respite

4. Health Education Northwest Integrated Care Demonstrator Site Caring for children with complex long term conditions Parents and carers trained to provide the necessary care for their child No standard certificate to demonstrate competency No standardised guidance as to how often training should be updated Little or no formal training for medicines administration for parents or carers

5. Health Education Northwest Integrated Care Demonstrator Site Lack of standardised training New care packages take longer to set up No standardised training or competency assessment for parents using Direct Payments or Personalised Budgets Care packages cannot be transferred across care settings: increased risk in breakdown of care – Governance issues – Human Resources Particular difficulties with transition to adult services

6. Health Education Northwest Integrated Care Demonstrator Site Carer Skills Passport For parents and professional carers of children and young people with complex long term conditions Transferable across all care settings Assurance that parents and carers are competent to provide safe, effective care Ensure a safe, effective, flexible workforce, Facilitates – Person centred care – in the most appropriate setting, – continuity across care settings Reducing length of stay

7. Health Education Northwest Integrated Care Demonstrator Site Key deliverables A comprehensive training needs analysis A portfolio of standardised care competencies supported by Key Partners A template “honorary” contract for carers in-reaching into an inpatient setting A prototype Carer Skills Passport – Can be used by parents or carers – Core and additional competencies, assessment and training requirements – Transferrable across all care settings Directory of accredited trainers

8. Health Education Northwest Integrated Care Demonstrator Site Impact analysis Retrospective case study approach to evaluate the potential benefit of introduction of the Carer Skills Passport on – Requirement for emergency admissions – Length of stay – Transfer of care – Readmission within 91 days – Continuity across care settings

9. Health Education Northwest Integrated Care Demonstrator Site Progress to date Nurse facilitator recruited First wave of competencies agreed – Suction – there are detailed competencies already available but these need to be cross agreed with adult services – Oxygen – Saturation monitoring – Resuscitation – including modified resuscitation for children with Personal Resuscitation Plans and/or tracheostomies – Nebulisers – Buccal medication – Confidentiality, raising concerns, professional boundaries – this will be significantly enhanced by filmed scenarios/simulation Appropriate training materials, and training model identified Training needs analysis in progress Impact analysis in progress

10. Health Education Northwest Integrated Care Demonstrator Site Metric improvements Impact analysis of the potential benefit of introduction of the Carer Skills Passport on – The requirement for unplanned admissions – Length of stay – Transfer of care – Readmission within 91 days – Continuity across care settings – Patient safety Cohort of children and young people registered with a Liverpool GP and eligible for NHS Continuing Care that accessed Alder Hey Children’s Hospital as inpatient in 2014

11. Health Education Northwest Integrated Care Demonstrator Site Emerging themes Extremely high level of interest in the project – Providers – Commissioners – Patients and parents Significant differences in training and skills – Different techniques and terminology – Little or no training for parents Clinical Governance issues – Human Resources Honorary Contracts – Expectation of care provided by parents versus carers

12. Health Education Northwest Integrated Care Demonstrator Site Hannah Rose Young person with Personal Health Budget “…I was … worried about making sure my personal assistants were trained in all my care needs. I was informed that the amount of training required was at my discretion …This worried me … I would have appreciated having a suitably qualified person to assist me through the process of training that could sign my PA's off as competent. Nobody wanted to take responsibility for this.”

13. Health Education Northwest Integrated Care Demonstrator Site Karen: mother of Katie Ellen “I think the training passport is a brilliant idea …it would most definately cut down a lot of … confusion between community's staff, parents and carers …meaning the whole package process runs more smoothIy. We find it frustrating when we come into hospital or new carers are trained to do a procedure a different way to how we were taught. Parents and indeed grandparents … have … no refreshers, updates etc. [families should] have regular updates and reviews”

14. Health Education Northwest Integrated Care Demonstrator Site Karen: mother of Katie Ellen “I feel strongly that … carers should follow the child if that be hospital or hospice as [when] we have gone long periods without contact with carers … my child missed her … the carer … had to have re training as things had changed so much … a trust has been built up that needs to be maintained … the carers need stability in terms of jobs … one of our carers didn't like the fact she wasn't seeing Katie Ellen for weeks on end due to hospital admissions and …. left”

15. Health Education Northwest Integrated Care Demonstrator Site Round table discussion What are the Barriers and Facilitators for implementation of the Carer Skills Passport in your area?