Congenital Heart Disease Network – South Wales and South West Network Board Meeting 15th March 2017

National Context Update NHS England has formally launched consultation – closing 5th June 2017 UHW consultation event 15th Mar UHB consultation event 15th May Bristol City Councillors to formally support UHB and SWSW Network

Self-assessments / visits - paed

Self-assessments / visits - paed

Self-assessments / visits - adult

Self-assessments / visits - adult

Headline Reds and Ambers – Paed and Adult Network approach / Staffing (actions underway): Formalised pathways – Being written by AT and DW MDT attendance – Letter of support written to all CDs. PECs / cardiologists to inform if unable to attend. Option to remote access Transfer of images / remote access – UHB-UHW test. Mapping all availability Standard patient information records – Awaiting a national steer. AT on CRG Registered nurse and dedicated consultant time – Network will need to define options and then approach commissioners. Considering virtual CNS slots to video L1 centre Training and education: End of life, breaking bad news, pall care – Pall care best prac in progress. Other training should be available locally. Contact network if not to include in next annual session Formal network training plan – To be developed Ability to rotate to L1 centre – Possible in principle, but time a constraint Organisation, governance and audit Network-wide audit / governance framework (including for risk and incidents) – Mar Board Wider meetings for audit, M&M, CPD – Mar Board Standard database - Awaiting a national steer. AT on CRG

Patient Engagement Circulation Newsletter Email + In-patients OPD clinic visits Exeter Fetal survey Listening event March NHS England, May Virtual ref group Web site, July Facebook, Jun 17 Pt engagement Cardiff, Autumn Circulation Newsletter Email contacts In-patients PICCU, ward 32, NICCU, BHI OPD clinic visits Exeter ( pic) Others in the diary Fetal survey March NHS England May 15th Vitual ref group for advice Listening event March Web site Pt engagement Cardiff Autumn

Working group updates Image sharing: UHW IEP / PACS – installing and testing new PACS, then business case for IEP link UHW use of Ipads Miraki box Mapping capabilities for digital archive, PACS and IEP Option of trialling GE system Palliative Care – meeting 16th Mar to progress work from last Board Website – procurement in progress, expected live July 2017 M&M – proposal to combine morbidity and adverse incident reporting (for discussion in PM workshop)

Bristol Independent Review Progressing well with good engagement from families and commissioners from England and Wales Visit from Bristol & South Gloucestershire councillors v positive, with commitment to write letter of support for UHB and the network in NHS E consultation 6-month progress to Overview and Scrutiny Committee Patient-friendly progress report being drafted Some slippage on timescales due to need to demonstrate embedding of new processes Challenges around how to implement some changes in practice – e.g. patients recording consent conversations and requirement for explicit anaesthetic consent

Nurse education strategy Set Scene Standards Local Link Nurse Nurses with an interest 44 clinics a week in 36 centres Partnership/Shared Care to Network care, up-lifting skills Small numbers in-patients Visiting Cardiologists, in-house cardiologist, PECs expectation of a RGN Challenges Identify RN/Child, RN/Adult, Expertise/ lack of engagement Education supported by Network Lead Nurse Opportunities Childrens Faculty Cardiac 1 + 2 BRHC Adult Southbank University, (UWE) RCN competencies for Band 5 and 6 Shadowing in Level 1 centre Conferences, BCCA.,ACHD, EuroGUCH MSc, PhD Workshop at future board Year 1 (2017) Identify nurse Level 3 centres Clarify senior support in Level 2/3 centre Shadowing in Level 1 on ward and OPD Meet Level 2 CNS teams Gap analysis 31 surveys Book onto appropriate course ‘Congenital Network Nurses’ group email for comms, training, peer support Year 2 (2018) First nurses attending Adult and Paed courses Participate in local clinics Explore ‘Helpline’ options Set up 3-6monthly Link Nurse Meetings – hub meetings Charity funding to support RCN competences completed Year 3 (2019) All attended courses. Local education to up skill other RGN Helpline established In patient support established Set the scene Study days are purely an introduction to know what you don’t know. Module 1 Foundation Module 2 Advanced RCN competencies Take booklets B5(L3) The network Children’s Cardiac Nurse Specialist Team will provide support, education and a link to the outpatient and ward nursing staff at the Local Children’s Cardiology Centre. A local link nurse will be identified who can be a point of contact within the Local Children’s Cardiology Centres B29(L1) Each Specialist Children’s Surgical Centre will employ a minimum of 1 WTE children’s cardiac specialist nurse per 600 000 catchment population, whose role will extend throughout the Congenital Heart Network, ensuring that both an in-hospital and outreach service is provided. B10(L2) Specialist Children’s Cardiology Centres must have locally designated registered children’s nurses with a specialist interest in paediatric cardiology, trained and educated in the assessment, treatment and care of cardiac children and young people. Immediate B11(L2) There must at all times be a minimum of two registered children’s nurses allocated to the operational children’s cardiology beds who are trained according to the Royal College of Nursing competency framework. Immediate B12(L2) Each Specialist Children’s Cardiology Centre will provide skilled support to undertake blood pressure and oxygen saturation monitoring accurately and effectively. Immediate B13(L2) The network Children’s Cardiac Nurse Specialist Team, will support the Specialist Children’s Cardiology Centre. An appropriate number of Children’s Cardiac Nurse Specialists will be based at the Specialist Children’s Cardiology Centre (the number will depend on geography, population and the congenital heart network). B5(L3) The network Children’s Cardiac Nurse Specialist Team will provide support, education and a link to the outpatient and ward nursing staff at the Local Children’s Cardiology Centre. A local link nurse will be identified who can be a point of contact within the Local Children’s Cardiology Immediate Training E2(L1) All members of the cardiac and PICU medical and nursing team will complete mandatory basic training on end-of-life care, breaking bad news and supporting children, young people and their families through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. E2(L2) All members of the cardiac and PICU medical and nursing team will complete mandatory training on end-of-life care, breaking bad news and supporting children, young people and their families through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. E2(L3) All members of the cardiac medical and nursing team will complete mandatory training on end-of-life care, breaking bad news and supporting children, young people and their families through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. E6(L2) Sufficient Clinical Nurse Educators must be provided across each Congenital Heart Network to deliver standardised training and competency-based education programmes. Each Specialist Children’s Cardiology Centre must have one clinical educator who is responsible for ensuring the continuing professional development of nursing staff in the Specialist Children’s Cardiology Centre. The competency-based programme must focus on the acquisition of knowledge and skills such as clinical examination, assessment, diagnostic reasoning, treatment, facilitating and evaluating care, evidence-based practice and communication. Skills in teaching, research, audit and management will also be part of the programme. E5(L3) Sufficient Clinical Nurse Educators must be provided across each Congenital Heart Network to deliver standardised training and competency-based education programmes. They will be responsible for ensuring the continuing professional development of nursing staff in the Local Children’s Cardiology Centre and community paediatric nurses. The competency-based programme will focus on the acquisition of knowledge and skills such as clinical examination, assessment, diagnostic reasoning, treatment, facilitating and evaluating care, evidence-based practice and communication. B4(B3) ACHD Specialist Nurses from the Specialist ACHD Surgical Centre or Specialist ACHD Centre will provide support, education and a link to the outpatient and ward nursing staff at Local ACHD Centres. A local link nurse will be identified who can be a point of contact within the Local ACHD Centre. E2(L1) All members of the cardiac and ICU medical and nursing team will complete mandatory basic training on end-of-life care, breaking bad news and supporting patients and their partners, families and carers through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. E2(L2) All members of the cardiac and ICU medical and nursing team will complete mandatory training on end-of-life care, breaking bad news and supporting patients and their partners, families and carers through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. E2(L3) All members of the cardiac medical and nursing team will complete mandatory training on end-of-life care, breaking bad news and supporting patients and their partners, families and carers through loss. Identified members of the medical and nursing team will need to undergo further in-depth training. B5 L3 The network Children’s Cardiac Nurse Specialist Team will provide support, education and a link to the outpatient and ward nursing staff at the Local Children’s Cardiology Centre. A local link nurse will be identified who can be a point of contact within the Local Children’s Cardiology

RCN – Competency framework

To support adult standards, guidelines from RCN for nursing published Knowledge and skills framework Competencies for Band 5, 6 and 7 nurses will be helpful.

Doctors’ training Adult programme x 4 over 2 years No Paediatric day Annual day for Drs Survey Drs for topics General cardiologist PECS

Network Work Plan Timings

Upcoming Network Activity Site visits and patient listening events: March ’17: Gloucester adult, Musgrove park children’s April ‘17: Plymouth, Taunton adult May ‘17: Exeter, Truro, Barnstaple Jun ’17: Glangwili adult TBC: Cardiff adult listening event Newsletter Mar ’17 Annual report – May ‘17 Upcoming Board dates and topic focus: Date Afternoon workshop focus Tuesday 13th June 2017 Website final test Psychology – tiered support between information giving, primary care, local hospital and specialist cardiac psychologist Thursday 28th September 2017 Annual M&M / audit Tuesday 12th December 2017 Transition and learning disabilities Thursday 22nd March 2018 Research strategy