The Royal Brompton & NHS Foundation Trust

Royal Brompton Hospital Congenital Heart Disease Network

2019 / 20 Annual Business Plan

Authors: Dr Nitha Naqvi Dr Leonie Wong Lawrence Mack Simon Boote Approved by: Congenital Heart Disease Working Group Ratification Committee: Congenital Heart Disease Network Board

Date Ratified: 29/04/2019 Chairman: Dr Angela Tillett Implemented by: All Document Authors Meeting Chair Meeting Members Network Management Team Issue Date: April 2019 Version: 001 Review Date: March 2020 Review interval: 12 Months

Issued: April 2019 Version: 001 Page | 1

Contents Page Link

1 Contents 1 Contents ...... 2 2 The Brompton Hospital and Congenital Heart Disease ...... 3 3 The Annual Business Plan ...... 3 4 Governance & Committee Structure ...... 3 5 RBH-CHD Strategic Vision ...... 4 6 Operational Delivery Network ...... 4 7 Network Objectives ...... 6 8 The King’s Health Partnership CHD Colocation ...... 6 8.1 Partnership Vision ...... 7 8.2 How we will deliver this vision within Congenital Heart Disease Services ...... 8 8.3 Developments in Transition ...... 9 9 IT Roadmap ...... 10 10 Appendix 1 – Network Board & Sub-Committees ...... 12 11 Appendix 2 – Network Management Team ...... 13 12 Appendix 3 – Work Plan ...... 14 13 Appendix 4 – Strategic Vision ...... 24 14 Appendix 5 – Transition model ...... 25 15 Appendix 6 – IT Delivery Timeline ...... 26

Issued: April 2019 Version: 001 Page | 2

Contents Page Link

2 The Brompton Hospital and Congenital Heart Disease The Royal Brompton & Harefield NHS Foundation Trust (RBHT) is the largest specialist heart and lung centre in the United Kingdom, and amongst the largest in Europe. The trust is formed of 2 sites, the (RBH) and the Harefield Hospital, following a merger in 1998. The cross-site partnership allows us to carry out some of the most complicated surgery and offer some of the most sophisticated treatment that is available anywhere in the world. Paediatric and Adult Congenital Heart Disease (CHD) services are long established at RBH, and the teams were keen to serve patients nearer to their homes from the beginning recognising the importance of education and good communication with district general hospital professionals. A loyal Network of level 3 centre doctors and allied professionals was established and has been working well since the 1970s. Teaching and dialogue have always been recognised and RBH has a long history in educational courses in CHD attracting our own Network in addition to other professionals involved in CHD. The first “network days” were held in 2014. The CHD Network was formally recognised more recently in 2016. RBH appointed a CHD Network Director and an Associate CHD Network Director in 2018, followed by a CHD Network Manager in 2019.

3 The Annual Business Plan The purpose of this document is to highlight the work being carried out by RBH, and network member , to develop the RBH-CHD Network. It will bring into focus activities that are due to be delivered in 2019 and so enable the RBH-CHD Network to move towards alignment with NHS England’s recommendations around the provision of CHD services. The plan will consist of the RBH-CHD Strategic Vision, the structure (operational and governance) that will allow us to achieve our goals, and a work plan.

4 Governance & Committee Structure In Q4, 2018, the RBH-CHD Network Board (Appendix 1) was formed and full terms of reference agreed. The board will ensure the RBH-CHD Network is able to realise its strategic vision by ensuring the Network Management Team (Appendix 2) delivers on agreed objectives of the Network Plan (Appendix 3). The Network Plan will be reviewed on a quarterly basis and shared with our Level 3 Partners. An annual report will be produced detailing accomplishments, challenges and areas for improvement during the year. Quality improvement initiatives will be born out of an end of year audit against national standards. This will help inform the 2020/21 Network Plan. The Network Board does not have any regulatory or enforcement powers to make network partners fully comply with standards, but it can and will raise any concerns and issues to the appropriate responsible officers. The Network Management Team is there to provide support and assistance to help partners as much as possible to meet the national CHD Level 3 standards.

Issued: April 2019 Version: 001 Page | 3

Contents Page Link

The RBH-CHD Network Board will be externally accountable to the Medical Director of Specialised Services, NHS England, London. The Board will also have intra-hospital accountability to Dr Vias Markides (Divisional Director, Chair of Adult Quality & Safety Meeting, Heart Division) and Dr Jan Till (Co-Director of Paediatric Cardiology, Chair of Paediatric Quality & Safety Meeting, Heart Division).

5 RBH-CHD Strategic Vision

The RBH-CHD Strategic Vision (Appendix 4) will allow us to drive CHD proposition development. It brings together structure and illustrates not only how the network aims will be realised, but who will deliver them. Core to the vision will be three pillars that all RBH-CHD Network activities will fall into. These core pillars will allow the RBH-CHD Network Board to effectively illustrate the value of work being undertaken, and reassure all stakeholders that the work plan is targeted and comprehensive; they are as follows: - Patient Centred – activities here will be focused on improving the value proposition for CHD patients and their families. - People & Talent – activities here will focus on leadership, education and providing accessible platforms to grow. - Safe & Sustainable – activities in this domain will be around embracing technology, pathway development, performance metrics, audit, risk management and shared learning.

6 Operational Delivery Network

The RBH-CHD Network is hosted by RBH. There are currently twenty-six Level 3 DGH’s in the network over a wide geographic spread across South-East England. The network centres are as follows: Level 1 Centre (Network Host): Royal Brompton Hospital Level 3 Centres and our Specialist Paediatricians with Expertise in Cardiology:

RBH is a collaborative academic centre that focuses on supporting clinicians in all aspects of patient care. This is highlighted by our commitment to our Specialist Paediatricians with Expertise in Cardiology (PECs). Our PECs are core to the operational delivery network and key to its success. They are supported by our Multidisciplinary Team and encouraged to collaborate and attend training / network events as much as possible. The following table lists the hospitals in the RBH-CHD Network and PECs that support outreach clinics.

Issued: April 2019 Version: 001 Page | 4

Contents Page Link

No. Hospital (H), Trust (T), PEC (P) No. Hospital (H), Trust (T), PEC (P) H: Basildon University Hospital H: Broomfield Hospital T: Basildon & Thurrock University Hospital NHS FT T: Mid-Essex Hospital NHS T 1 2 P: Dr Ramaratnan Ramanan P: Dr Mahesh Babu P: Dr Rani Thankappen P: Dr Job Cyriac H: Chelsea & Westminster Hospital H: Colchester Hospital T: Chelsea & Westminster Hospital NHS FT T: East Suffolk & North Essex NHS FT 3 4 P: Dr Angela Tillett P: Dr Bikash Bhojnagarwala P: Dr Ramona Onita H: Croydon University Hospital H: East Surrey Hospital (Redhill) T: Croydon Health Services NHS T T: Surrey and Sussex Healthcare NHS FT 5 6 P: Dr Arun Kumar P: Dr Majeed Jawad P: Dr Grant Marais P: Dr Prashanthi Katta H: H: Hemel Hempstead Hospital T: Imperial College Healthcare NHS T T: West Hertfordshire Hospitals NHS T 7 8 P: Dr Emmanuel Quist-Therson P: Dr Jayanta Banerjee P: Dr Sankara Narayanan H: Hillingdon Hospital H: Kingston Hospital 9 T: The Hillingdon Hospitals NHS FT 10 T: Kingston Hospital NHS FT P: Dr Abbas Khakoo H: Lister Hospital H: Maidstone Hospital T: East & North Hertfordshire NHS T T: Maidstone & Tunbridge Wells NHS FT 11 12 P: Dr Jonathan Kefas P: Dr Krishnan Balasubramanian P: Dr Anshoo Dhelaria H: Northwick Park Hospital H: Princess Alexandra Hospital T: London North West University Healthcare NHS T T: The Princess Alexandra NHS FT 13 P: Dr Gerald Hanson 14 P: Dr Richard Nicholl P: Dr Sanjay Raina P: Dr Sathish Bangalore H: Queen Charlottes & Chelsea Hospital H: Queen Elizabeth II Hospital T: Imperial College Healthcare NHS T T: East & North Hertfordshire NHS T 15 16 P: Dr Jonathan Kefas P: Dr Jayanta Banerjee P: Dr Anshoo Dhelaria H: Queen Mary's Hospital for Children H: Queen Mary's University Hospital T: Epsom & St Helier University Hospital T: St George's University Hospital NHS FT 17 18 P: Dr Anay Kulkarni P: Dr Ruth Shephard P: Dr Donovan Duffy H: Southend University Hospital H: St George’s Hospital T: Southend University Hospital NHS FT T: St George's University Hospital NHS FT 19 20 P: Dr Mokhlesur Rahman P: Dr Anay Kulkarni P: Dr Vineet Gupta P: Dr Donovan Duffy

Issued: April 2019 Version: 001 Page | 5

Contents Page Link

H: St Mary's Hospital H: St Peter's Hospital T: Imperial College Healthcare NHS T T: Ashford & St Peter's NHS FT 21 22 P: Dr Alison Groves P: Dr David Inwald P: Dr Tosin Otunla H: Watford General Hospital H: West Middlesex University Hospital T: West Hertfordshire Hospitals NHS T T: Chelsea & Westminster Hospital NHS FT 23 24 P: Dr Emmanuel Quist-Therson P: Dr Eleanor Hulse P: Dr Sankara Narayanan H: West Suffolk Hospital H: Worthing Hospital T: West Suffolk NHS FT T: Western Sussex Hospitals NHS FT 25 26 P: Dr Martina Noone P: Dr Anil Garg

7 Network Objectives Network objectives will fall under the remit of five sub-committees that feed into a CHD Network Board; they are as follows:

- Patient Experience – the development of an open network that is accessed easily by our patients, reacts to their needs and strives for excellence through continual evolution. - Technology – the design and launch of a digital hub that will allow unimpeded data flow and communication across the network. Technological support to every network District General Hospital (DGH) where needed. - Pathways & Protocols – to design and publish clinical and patient-accessible pathways that align with best practice and illustrate the expected patient journey. To have clear and standardised methods of referral for planned and acute care in fetal, paediatric and adult congenital heart disease. - Quality, Safety & Audit – the development of a robust governance structure that ensures alignment with national standards, robust mechanisms for audit submission, the development of local audit to guide development, instituting of effective key performance indicators to highlight areas of concern, the design and development of an Integrated Quality Report to be shared within the network and allow across-the-board learning. - Transition – this sub-committee will be solely focused on the transition of paediatric CHD patients to an adult CHD service.

8 The King’s Health Partnership CHD Colocation

The Trust is exploring a future partnership with the King’s Health Partnership (KHP) for paediatric and adult clinical services, academic education and research, in heart and lung disease. KHP

Issued: April 2019 Version: 001 Page | 6

Contents Page Link

comprises Guy’s and St Thomas’s NHS FT (GSTT), King’s College Hospital (KCH), South London and Maudsley NHS FT (SLaM), and King’s College London (KCL) university.

The partners have a united vision to create a global powerhouse for heart and lung medicine and research in London, providing the best possible patient care and experience. Central to the vision is the development of a new purpose-built clinical academic facility on the GSTT and Evelina London Children’s Hospital (ELCH) site. The partnership would also provide substantial investment to other sites within the organisations including Harefield, to support the provision of high-quality care in a new network for patients across the south of England.

In November 2017 the NHS England (NHSE) Board took the decision that specialised (Level 1) CHD services will only be commissioned from hospitals that are able to meet all the standards within timeframes set by NHSE. RBHT and KHP responded to NHSE’s decision by proposing new adult and children’s CHD services at the GSTT and ELCH site. These services will fully meet NHSE’s standards for CHD services and will also form an integral part of the wider cardiovascular and respiratory Partnership between RBHT and KHP. NHSE have indicated that they are supportive of this proposal in principle but remain open-minded to alternatives; this support is also contingent on RBHT and KHP developing and delivering a detailed plan with clear milestones which will lead to full co-location for all RBH paediatric (Level 1) inpatient services by April 2022. In the interim, Level 1 CHD services for adults and children will continue to be commissioned from RBH. NHSE have confirmed that they will monitor progress against RBH’s plans and will take commissioning action if RBHT are unable to demonstrate convincing progress along the way. This paper sets out the progress achieved to date, RBHT-KHP’s approach and immediate next steps for achieving further integration in support of RBHT meeting all standards for level 1 congenital heart disease services by 2022.

8.1 Partnership Vision

Our vision as a partnership is to create a new model of care, working alongside other providers of health and social care across our networks to deliver world-class care, at the right time, in the right place for our patients. This model will enable us to:

- Deliver world-class clinical services from before birth through to old age for common and rare conditions on a local, regional, national and international level - Form a collaborative network, bringing together the scale and breadth of our experience to offer outstanding outcomes and sustainable care for adults and children with heart and lung conditions closer to their home.

Issued: April 2019 Version: 001 Page | 7

Contents Page Link

- Enable the Partnership to consolidate its place at the forefront of UK and international health research and build strong industry and commercial partnerships. - Attract and train the next generation of the workforce, to build excellence across the whole multidisciplinary team, through national and international training and education, including investment in innovative new roles for staff. We will achieve this by:

- Innovating distinctive care pathways that will enable our patients to have access to personalised care that is delivered as close to their home as possible and will lead to improved patient experience, recovery and outcomes. Through this dedicated and personalised care, we will support our patients to minimise the impact of their medical condition on their lives. - Building on our world-class research capabilities to accelerate the translation of innovative research and technology into clinical practice. This means that our patients will have rapid access to the most innovative care models and new therapies. - Building new facilities and harnessing technology to support us to deliver efficient, appropriate care for all our patients. This will enable our patients and their families to choose whether to be treated at home, through remote consultation, at state-of-the-art ambulatory care centres, or when necessary, in world-class inpatient services. By working in this way, we will become an exemplar for the way healthcare will be delivered in the future. We will address challenges such as pace in adoption of new technology and advances in care, fragmentation of care across multiple organisations, staff recruitment and retention and delivering care at a sufficient scale to develop true sub-specialty expertise. In achieving this we will deliver population health solutions which deliver outstanding outcomes, address unwarranted variation and provide sustainable care for congenital heart disease within a networked system.

8.2 How we will deliver this vision within Congenital Heart Disease Services

Building on the current strengths of the partner organisations, the Partnership will deliver an enhanced clinical service at the centre and across the network, for the benefit of our patients throughout their life course, and their families. We will achieve this by:

- Bringing all adult and children’s congenital heart disease teams together onto one acute and academic provider campus which provides multi-speciality services including maternity and fetal medicine will support us in taking a whole life-course approach to treating congenital heart disease from conception, through fetal medicine, maternity, neonatology, children’s services, adolescent care, onto young adult services and adult care. This will include more personalised transition from child to adult services and provide greater continuity of care for our patients.

Issued: April 2019 Version: 001 Page | 8

Contents Page Link

- Ensuring our congenital heart disease services will be co-located with interdependent clinical services hosted by GSTT. This approach will support us in delivering comprehensive care to our patients with congenital heart disease as they will be able to rapidly access specialist treatment, including care for less common conditions and non-cardiac conditions. As part of this horizontal integration children’s congenital heart disease services will be delivered from dedicated children’s facilities in the comprehensive multi-specialty ELCH; by delivering care in this way we will comply with all the NHS standards for level 1 congenital heart disease services.

- Using our combined patient population to enable us to leverage scale to provide enhanced sub‐specialty services for rare diseases e.g. Kawasaki disease and cardiac channelopathies. This scale will also support our vision for translational research which will ensure that our service is at the forefront of new developments in treatments and therapies.

- Building a networked system for children and young people across the south-east by bringing together existing networks to provide outstanding care, outcomes, research and education which will enable us to work with our partners to enhance our care pathways and provide a high-quality, consistent and accessible service at whichever point patients enter our system.

- Forming a partnership which will help us create a sustainable workforce that addresses national shortages in the children’s healthcare workforce by retaining existing staff, attracting new talent and training the next generation of healthcare professionals. In doing this we will provide new educational opportunities for doctors, nurses and allied health professionals, designing new roles that put children and their families at the centre of a sustainable model of care to improve experience, outcomes and efficiency.

- Building world class facilities that enable high quality inpatient & ambulatory care alongside cutting edge translational research. Capital expansion plans will be co-designed with clinical staff and families from across the Partnership to ensure they are fit for purpose and futureproof.

8.3 Developments in Transition

Current NHS England’s standards (2016), NICE guidelines and quality standards (2016) and CHD standards and specifications require all CHD patients to undergo structured transition, starting at the age of 12 years, to prepare and support patients before and around the time of transfer to adult CHD services. NICE (2016) defines transfer as “the actual point at which the responsibility for providing care and support to a person moves from a child to an adult provider”. A specialised

Issued: April 2019 Version: 001 Page | 9

Contents Page Link

CHD transition is therefore required across all Level 1, 2 and 3 centres within the GSTT / ELCH and RBH networks. Dr Konstantinos Dimopoulos (RBH Adult CHD Consultant and Transition Lead) and Dr Natali Chung (GSTT Adult CHD Network Lead) have proposed a joint transition model (Appendix 5) that allows alignment with standards and effective movement throughout all the centres involved. Over the next 12 months, this agreement will be further formalised with specific deliverables identified and tracked at the Transition Sub-Committee. It is expected that each network centre will adopt this model and look to expand and develop on it in their practice, according to preference and resources.

9 IT Roadmap

To align with recommended standards, it was acknowledged by the Network Management Team that a large piece of transformational work was needed around IT and telemedicine. A quality improvement action point was agreed by the RBH-CHD Working Group around formulation of an IT Roadmap, a working plan highlighting area of focus and a timeline for delivery. Areas of IT focus were identified if one of the following criteria were met:

- They were a network standard - They supported the Strategic Goals of the RBH-CHD Network - They improved the patient journey - They supported safe and sustainable care The list of digital developments was then filtered to only include applications or platforms that were not readily available to the required standard (i.e. an application that RBH already had that fitted the brief). The following areas of focus were then agreed:

E-Referral Telemedicine Access to an online referral portal allowing secure Tele-MDM portal allowing high volume and easy referral from all clinical professionals to participation in Adult CHD MDM’s and JCC’s RBH CHD Services RBH-CHD Digital Hub CHD Registry Image Sharing A gateway that will allow the capture of L3 activity A hosted, cloud based image sharing portal that (basic demographics, clinic lists) that will feed into allows quick and easy sharing of Echocardiography the RBH CDW and allow a whole-Network view of images and supporting clinical documentation patient flow

Issued: April 2019 Version: 001 Page | 10

Contents Page Link

Our attainment of an RBH-CHD Digital hub will be tracked and discussed at the Technology Sub- Committee. Prior to this meeting, a proposed working timeline (Appendix 6) has been agreed for adoption and development by this committee. Technology updates will feed into the RBH-CHD Network Board.

Issued: April 2019 Version: 001 Page | 11

Contents Page Link

10 Appendix 1 – Network Board & Sub-Committees

Patient Experience

Pathways & Dr Vias Markides / Dr Jan Till Protocols Heart Division Quality & Safety Meeting

CHD Network Board

Technology Board

Transition Medical Director Board Specialised Services, London NHS England Quality, Safety & Audit Board

Issued: April 2019 Version: 001 Page | 12

Contents Page Link

11 Appendix 2 – Network Management Team

Dr Vias Markides Director, Heart Division

Dr Jan Till

Co-Director, Paediatrics

CHD Management Team Dr Nitha April 2019 Naqvi Network Director

Simon Dr Leonie Boote Wong Network Manager Assistant Network Director

Susana De Vacant Sousa

Network Lead Nurse Network Admin

Issued: April 2019 Version: 001 Page | 13

Contents Page Link

12 Appendix 3 – Work Plan

Action Milestone Reference Standard Core Pillar Owner Date Network Leadership Each Congenital Heart Network will have a formally People & Talent LM Dr Nitha Naqvi has been September appointed Network Clinical Director with responsibility appointed the CHD 2018 for the network’s service overall, who will be supported Network Director November by clinical leads for surgery, cardiac intervention, fetal Dr Leonie Wong has 2018 cardiology, neonatal, paediatric, adolescent and adult been appointed A22 (L1) congenital heart disease and anaesthesia. Associate Network The Network Clinical Director will provide clinical Clinical Director leadership across the network and will be appointed from the network.

Each Congenital Heart Network will have a formally People & Talent LM Post was approved with December appointed Lead Nurse who will provide professional JD being completed to 2018 A (23) and clinical leadership to the nursing team across the put job out to advert 1.0 network. wte Each Congenital Heart Network will have a formally People & Talent LM Mr Simon Boote was October 2018 appointed Network Manager responsible for the hired as the Network A (24) management of the network, and the conduct of Manager. He will take up network business post on the 15th January 2019. Service Design A (1) Each network should develop a business plan Safe & Sustainable LM February 2019

Issued: April 2019 Version: 001 Page | 14

Contents Page Link

Each Congenital Heart Network and NHS Patient Centred NN, SB July 2019 commissioners will establish a model of care that delivers all aspects of the care and treatment of children and young people with congenital heart disease. The model of care will ensure that all congenital cardiac care including investigation, cardiology and surgery, is carried out only by congenital cardiac specialists (including paediatricians A (2) with expertise in congenital (BCCA definition)). The model of care will also ensure that as much care and treatment will be provided as close as possible to home and that travel to the Specialist Children’s Surgical Centre only occurs when essential, while ensuring timely access for interventional procedures and the best possible outcomes.

Specialist Surgical Centres will adhere to their Safe & Sustainable NN Updated patient Sept 2019 Congenital Heart Network’s clinical protocols and management guidelines A (4) pathways to be reviewed at the CHD Network Board, 27/04/2019

Issued: April 2019 Version: 001 Page | 15

Contents Page Link

There must be an appropriate mechanism for Safe & Sustainable NN, SB a) & b) Audit arranging retrieval and timely repatriation of patients complete Aug which considers the following: We already audit patients 19, strategy retrieved to our PICU and plan to be a) Clinical transfers must be arranged in a timely referrals refused. developed by manner according to patient need. Transfer of patients back Jan 2020 to local hospitals can be b) Critically ill challenging due to lack of children must be transferred/retrieved in accordance bed availability in level 3 with the standards set out within the designation centres especially in standards for Paediatric Intensive Care services. winter, resistance in Acute beds must not be used for this purpose once some units to taking patients have been deemed fit for discharge from acute patients back and a cardiac surgical care. significant challenge is parents refusing to leave A (5) RBH to go to their level 3 centre when appropriate.

We do not have any leverage with bed availability in level 3 centres and when parents refuse to leave RBH we currently lack powers to enforce this. Strategies to tackle these issues to be discussed at first board meeting.

Issued: April 2019 Version: 001 Page | 16

Contents Page Link

There will be specific protocols within each Congenital Safe & Sustainable NN This currently happens Aug 2019 Heart Network for the transfer of children and young according to clinical people requiring interventional treatment. need. Specific written A (6) protocols are to be designed in conjunction with interventional consultants.

All children and young people transferring across or Safe & Sustainable NN Already in place from between networks will be accompanied by high quality each patient’s individual A (7) information, including a health records summary (with consultant. responsible clinician’s name) and a management plan. Congenital Heart Networks will develop and implement Safe & Sustainable NN, LM, SB Being discussed at Audit of a nationally consistent system of ‘patient-held records’. National Network Days. current GSTT and RBH to practice by A (8) collaborate on this as May 2019 well. Completion date 2020 Specialist Surgical Centres will adhere to their Safe & Sustainable NN, LM RBH is a level 1 February 2015 Congenital Heart Network’s clinical protocols and Surgical Centre that pathways to care that will: provides a full team of required specialist. There a) require all paediatric cardiac surgery, planned is a team of 4 therapeutic interventions and diagnostic catheter interventional October 2018 procedures to take place within a Specialist Surgical cardiologists; 4 A (9) Centre; congenital surgeons 4 EP consultants. A new adult b) allow neonates with patent ductus arteriosus to interventional cardiologist receive surgical ligation in the referring neonatal joined the team in intensive care unit (level 3) provided that the visiting October surgical team is dispatched from a designated Specialist Children’s Surgical Centre and is suitably PDAs are carried out by equipped in terms of staff and equipment (this is the a team of surgeons and

Issued: April 2019 Version: 001 Page | 17

Contents Page Link

sole exception to the requirement that heart surgery interventional must be performed in a designated Specialist cardiologists. Children’s Surgical Centre). It will be for each Congenital Heart Network to determine whether this We have a hybrid theatre arrangement is optimal (rather than transferring the where such procedures neonate to the Specialist Children’s Surgical Centre) are carried out for according to local circumstances, including a paediatric and adult consideration of clinical governance and local transport cases. issues;

c) ensure that emergency balloon atrial septostomy and temporary pacing, if undertaken outside of a Specialist Children’s Surgical Centre, can be safely conducted if clinically indicated. Networks will develop clear guidelines that govern this process;

d) ensures that patients requiring electrophysiology must be treated in dedicated paediatric services, with paediatric cardiac surgical support not adult services; and

e) enable access to hybrid procedures (those involving November both surgeons and interventional cardiologists) in an 2015- hybrid appropriate facility either in the Specialist Children’s theatre Surgical Centre or in another Specialist Children’s completed Surgical Centre, if the need arises.

Issued: April 2019 Version: 001 Page | 18

Contents Page Link

Each Congenital Heart Network will agree clinical Safe & Sustainable NN, SB, LM Currently this is Protocol and protocols and pathways to care that will ensure 24/7 performed on an pathway for availability of specialist advice including pre- operative individualised basis with completion risk assessment by a Congenital Heart team, including each patient’s lead Jan 2020 paediatric cardiologists and paediatric anaesthetists, cardiologist leading for patients requiring anaesthesia for non-cardiac decision. Complex cases surgery or other investigations, the most appropriate have their dental, ENT location for that surgery or investigation, and advice to and GI procedures at paediatricians across the Congenital Heart Network. RBH. Other specialist procedures/tests A (10) considered high risk are performed at ELCH & GOSH.

Formal protocols and pathways to be designed with additional collaboration from ELCH.

External Relationships Each Specialist Children’s Surgical Centre must have a Safe & Sustainable LM, JC We have a maternal and close fetal linkages with C&W, network relationship with all maternity and fetal St. George’s, Queen A (11) medicine services and neonatal services including Charlotte and West neonatal transport services, within their network and be Middlesex whom in turn able to demonstrate the receive referrals from the operation of joint protocols. wider fetal network.

Each Specialist Children’s Surgical Centre must have a Safe & Sustainable LM We are a single provider Complete close network relationship with any ACHD providers of paediatric and ACHD A (12) within their Congenital Heart Network and be able to services. demonstrate the operation of joint transition protocols.

Issued: April 2019 Version: 001 Page | 19

Contents Page Link

Each Congenital Heart Network must contain at least Safe & Sustainable LM We are a single provider Complete one Specialist Children’s Surgical Centre in a formal of paediatric and ACHD network relationship with the Specialist ACHD surgical services. service, Specialist Children’s Cardiology Centres and Local Children’s Cardiology Centres, evidenced by Ongoing Long standing agreed joint referral and care protocols. paediatric transplant referral pathway with Each Specialist Children’s Surgical Centre must have a GOSH and second formal network relationship with the following, opinions from Newcastle. A (13) evidenced by agreed joint referral and care protocols: Paediatric pulmonary hypertension pathway to the paediatric cardiothoracic transplant centres; the GOSH PH service. national Pulmonary Hypertension Service; and a paediatric cardiac pathologist with expertise in Pathology services congenital cardiac abnormalities provided by Professor Ho, Karen McCarthy and Jan-Lukas Robertus

Children and young people who require assessment Safe & Sustainable LM GOSH is primary referral Complete for heart transplantation (including implantation of a centre for RBH. A (14) mechanical device as a bridge to heart transplant) must be referred to a designated paediatric cardiothoracic transplant centre. Each Specialist Children’s Surgical Centre must have a Safe & Sustainable LM, VCM RBH nurses link with Complete close relationship with all community paediatric community nurses, services in their network, to ensure the provision of a similar relationship A (15) full range of community paediatric support services between RBH Paed particularly for children and young cardiac dieticians and people with complex medical and social needs. community dietetic service. Telemedicine & IT

Issued: April 2019 Version: 001 Page | 20

Contents Page Link

Each Congenital Heart Network will have telemedicine Safe & Sustainable SB Linkage present at some Audit of status facilities as required to link designated hospitals in the but not all centres in across network (Specialist Surgical Centres, Specialist network. network – to Cardiology Centres and Local Cardiology Centres, be complete according to local circumstances) and with other Capital investment by April 2019 Congenital Heart Networks. required to enable live streaming of echo’s from If investment The level of telemedicine required will be agreed whole network and to available between network members. As a minimum this must allow MDT attendance status to include the facility to: via VCR. This is a complete national challenge being connections a) undertake initial assessments of echocardiograms; discussed at National by Dec 2020 A (16) Network meetings. b) support participation in multi- site VC MDT PACS transfer for CT meetings; images etc working well across many units in the c) handle emergency referrals; network.

d) allow timely and reliable transfer and receipt of images (including echo, CT, MRI) across the various paediatric cardiac services; and support video- conferencing (e.g. Skype) for outpatient consultations from home when appropriate.

Issued: April 2019 Version: 001 Page | 21

Contents Page Link

Each congenital heart network must make Safe & Sustainable SB IT linkages require capital Audit of status arrangements for CHD clinicians and paediatricians investment. – March 2019 (inc. PECs) within the network to be able to access Aim to provide patient records and imaging systems in all Specialist Honorary contracts for all access for all Surgical Centres and Specialist Cardiology Centres in PECS with remote IT A (17) the network. access is possible but PECs by July requires time resource 2019 from IT and PECS. To be discussed at Network Board Meeting.

Multidisciplinary Team (MDT) Each Specialist Children’s Surgical Centre will have a Safe & Sustainable LM, NN Already takes place. Complete dedicated specialist multidisciplinary team (MDT) that Registers available. meets weekly to consider case management. Patients undergoing complex interventions or any surgical interventions must be discussed in an appropriate MDT meeting as defined by the network.

A (18) All rare, complex and innovative procedures and all cases where the treatment plan is unclear or controversial will be discussed at the network MDT.

The attendance and activities of the MDT meeting will be maintained in a register.

Staff from across the Congenital Heart Network should People & Talent NN Already takes place. Complete be encouraged to attend MDT meetings in person or Registers available for by video/teleconferencing and participate in the JCC.Out of hours A (19) decision-making about their patient where necessary. meetings for emergencies already take place with minimum on call team as A (20).

Issued: April 2019 Version: 001 Page | 22

Contents Page Link

The composition of the MDT will be pathway driven, Safe & Sustainable NN Reflected in ToRs, Complete and adjusted according to the needs of different captured on register or aspects of the service (for example: assessment, post- patient notes operative care, clinic, pathological and audit meetings). A (20) An out-of-hours MDT meeting for emergency decision- making will include as a minimum a congenital heart surgeon, a paediatric cardiologist and a paediatric intensivist.

Each Congenital Heart Network will hold regular Safe & Sustainable NN, SB Already occurring at least Complete meetings of the wider clinical team for issues such 4 times per year. as agreement of protocols, review of audit data and Timetables and registers monitoring of performance. Meetings will be held at available. A (21) least every six months.

Network patient representatives will be invited to participate in these meetings.

RBH-CHD Board Approved Actions The RBH-CHD Network Management Team must Safe & Sustainable 29/04/2019 Due implement a whole-network gap-analysis against Formal action plan to be 01/10/2019 29/04/2019 selected Level 3 standards for all local network designed at sub- centres. This initiative will be planned and formalised at committee level sub-committee level with Network Board accountability

**Note – as this is the first time a business plan has been published for the RBH-CHD Network, some work completed has been included in the work plan to provide more context in the development of the network. Following business plans will no include work completed, and will instead only list prospective objectives.

Issued: April 2019 Version: 001 Page | 23

Contents Page Link

13 Appendix 4 – Strategic Vision

Issued: April 2019 Version: 001 Page | 24

Contents Page Link

14 Appendix 5 – Transition model

• Paediatric teams to introduce concept of Transition <12 years • Include all CHD patients in Paeds DB (level 1 and network)

Transition starts • Paediatric teams refer to Transition team

12 years • Transition DB, young persons clinics • Information leaflets

• Offer date and mode of Transition contact: transition clinic, seminars etc. 14 years • Identify pts requiring medical vs CNS transition

• Ensure transition contact has happened • Ensure 1st ACHD clinic/Daycase booked, level of 15-16 years investigation decided

• Transfer: 1st ACHD clinic/ Daycase.

16-18 years • ACHD consultant takes over responsibility

21 years End of Transition

Issued: April 2019 Version: 001 Page | 25

Contents Page Link

15 Appendix 6 – IT Delivery Timeline

August 2019

It is envisaged that by August 2019 systems and platforms will have been identified for deployment. Early estimates for full delivery of every element in the RBH-CHD IT Transformation piece range between 18-24 months, whereby all Level 3 Network Centres would be fully versed in and subscribe to the RBH-CHD Digital Hub

Issued: April 2019 Version: 001 Page | 26

Contents Page Link