Specialised Services Service Specification. Adult Congenital Heart Disease

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1 Specialised Services Service Specification Adult Congenital Heart Disease Document Author: Executive Lead: Approved by: Issue Date: Review Date: Document No: Specialised Planner Director of Planning Insert Committee To be obtained from Corporate Services Manager or Corporate Governance Manager Page 1 of 14

2 Document History Revision History Version Revision date Summary of Changes No. Updated to version no.: Date of next revision Consultation Name Date of Issue Version Number Approvals Name Date of Issue Version No. Distribution this document has been distributed to Name By Date of Issue Version No. Page 2 of 14

3 Table of Contents 1. Aim 1.1 Introduction 1.2 Relationship with other Policy and Service Specifications Page 2. Scope 2.1 Service Model 2.2 Care Pathway 3. Quality and Patient Safety 3.1 Quality and Patient Safety 3.2 Quality Indicators (Standards) 3.3 Putting Things Right: Raising a Concern 4 Performance Monitoring and Information Requirements 4.1 Performance Monitoring 4.2 Key Performance Indicators 4.3 Referral Pathway 5. Equality Impact and Assessment Page 3 of 14

4 1. Aim 1.1 Introduction The document has been developed as the service specification for the planning of services for adults with congenital heart disease resident in Wales. The purpose of this document is to: detail the specification for services for adults with congenital heart disease who are resident in Wales; and identify which organisations are able to provide a congenital heart disease service for Welsh patients. 1.2 Relationship with other Policy and Service Specifications This document should be read in conjunction with the following documents: Commissioning policy for #########. Page 4 of 14

5 2. Service Delivery se 2.1 Service Model This section should describe the service, i.e. the service provided, the model of delivery, location and sites, etc. Overarching model The overarching model of care for adults with congenital heart disease is based on a network of services linking local, intermediate and specialist levels of care. In this model, specialist centres provide all ACHD surgery and catheter interventions, complex diagnostics and management of complex patients; intermediate centres provide ongoing management, diagnostics and management of ACHD in pregnancy; local centres provide long term follow up and onward referral to the appropriate level of service. Specialist services for patients in Wales are provided by designated ACHD specialist centres in England; intermediate and local level services are provided within Wales. For South Wales, specialist ACHD services are provided by University Hospital Bristol NHS Foundation Trust. Intermediate level services are organised via a hub and spoke model, with the hub based at University Hospital of Wales, Cardiff, and through outreach clinics held at DGHs in each LHB across South Wales. Hub and spoke Services for patients with ACHD are organised around a hub and spoke model. The hub is provided at University Hospital of Wales, Cardiff and Vale University Health Board. The following services are provided at the hub centre: General clinics for patients with simple, moderate and some complex ACHD Obstetrics clinics Page 5 of 14

6 Transition clinics Diagnostics and imaging Doc 2a Some surgery and catheter based interventions (following discussion with the specialist centre on the most appropriate location for intervention) Arrhythmia service Links with paediatric cardiology Links with specialist ACHD centre at Bristol Links with other specialist services: pulmonary hypertension, transplantation Outreach service General ACHD clinics will take place in each LHB. They will be delivered at the following locations: [optimal location for these clinics is to be confirmed] General clinics will be staffed by: ACHD specialist cardiologist Cardiologist with an interest in ACHD ACHD specialist nurse Cardiac physiologist Obstetric clinics All obstetric clinics will be held at the hub. Obstetric clinics will be staffed by an ACHD specialist cardiologist or cardiologist with a special interest in ACHD, obstetrician with expertise in ACHD, obstetric anaesthetist with expertise in ACHD. Transition clinics Transition clinics will be held in the hub and at Singleton Hospital, Swansea. Transition clinics will be staffed by: paediatric cardiologist, ACHD specialist cardiologist or cardiologist with a special interest in ACHD, transition specialist nurse. Page 6 of 14

7 Specialist ACHD cardiologist The service will be led by a specialist ACHD cardiologist based at the hub in University Hospital of Wales. The specialist ACHD cardiologist will maintain close links to the specialist ACHD service in Bristol for their continued professional development. Cardiac Surgery and Interventional Cardiology Most surgery and catheter interventions for patients with ACHD will be undertaken at the designated specialist centre. In some circumstances, it may be appropriate to undertake interventions locally at the University Hospital of Wales. The appropriate location for intervention will be agreed with the specialist centre MDT. Page 7 of 14

8 2.2 Care Pathway This section should describe the care pathway for the service, including the relationship with Welsh and / or English NHS services as appropriate. South Wales Links with specialist services: Pulmonary hypertension Transplantation Paediatric cardiac centre Local GUCH centres DGH with cardiologist with GUCH experience (e.g. Neath-Port Talbot, Singleton) GUCH Specialist Centre (UHW). Invasive Ix TOE Percutaneous procedures Transition service Pregnancy management Genetics Arrhythmia service DGH with cardiologist but no GUCH expert 1 st adult presentation to GP Tertiary GUCH surgical centre (Bristol, Birmingham, London) Page 8 of 14

9 3. Quality and Patient Safety 3.1 Quality and Patient Safety The Provider must work to written quality standards and provide monitoring information to the lead purchaser. The centre must enable the patient s, carer s and advocate s informed participation and to be able to demonstrate this. Provision should be made for patients with communication difficulties and for children. The service must meet the standards for patient centred care set out in the NHS Specialised Services standards for adult congenital heart disease (currently published as draft standards for consultation). 3.2 Quality Indicators (Standards) The Provider must work to written quality standards and provide monitoring information to the lead purchaser. Patients with adult congenital heart disease in Wales should access services that meet the following standards: NHS Specialised Services standards for adult congenital heart disease (currently published as draft standards for consultation) Cardiac Disease National Service Framework for Wales, standard 7. Children and Young People s Specialised Services Standards for Congenital Heart Disease. o Standard 4: transitional services for young people with congenital heart disease. o Standard 5: cardiac services for young people and adults with congenital heart disease The ACHD services within Wales will be delivered within a network of services linked to the designated specialist centre in England. ACHD Page 9 of 14

10 services in Wales will be delivered in accordance with the protocols and standards developed and agreed by the networks. Within South Wales, the service provided by the hub centre, University Hospital of Wales, Cardiff, should meet the standards for a level 2, intermediate centre, as set out in the NHS Specialised Services standards for adult congenital heart disease. Decisions over the appropriate location for surgery and catheter interventions should be undertaken in discussion with the specialist centre MDT. It is recognised that ACHD services are currently in a process of development towards meeting the service standards. A baseline audit against the standards should be undertaken in the first quarter of The ACHD services should develop an action plan, in conjunction with the cardiac networks, to outline how the ACHD service standards will be met and submit this to WHSSC by September An annual audit and progress report for 2014/15 should be submitted to WHSSC by June Putting Things Right: Raising a Concern Whilst every effort has been made to ensure that decisions made under this policy are robust and appropriate for the patient group, it is acknowledged that there may be occasions when the patient or their representative are not happy with decisions made or the treatment provided. The patient or their representative should be guided by the clinician, or the member of NHS staff with whom the concern is raised, to the appropriate arrangements for management of their concern: When a patient or their representative is unhappy with the decision, of the gatekeeper, that the patient does not meet the criteria for treatment and that the patient is not an exceptional case, the patient and/or their representative has a right to ask for this decision to be reviewed. The review should be undertaken, by the patient's Local Health Board, in line with section 7 of the All Wales Policy: Making Decisions on Individual Patient Funding Requests; When a patient or their representative is unhappy with the care provided during the treatment or the clinical decision to withdraw treatment provided under this policy, the patient and/or their representative should be guided to the LHB for NHS Putting Things Right. For services provided outside NHS Wales the patient or their representative should be guided to the NHS Page 10 of 14

11 Trust Concerns Procedure with a copy of the concern being sent to WHSSC. 4. Performance Monitoring and Information Requirements 4.1 Performance Monitoring WHSSC will be responsible for commissioning services in line with this service specification. This will include agreeing appropriate information and procedures to monitor the performance of organisations. For the services defined in this specification, the following approach will be adopted: Quality indicators (standards) Baseline audit against service standards in section 3.2 to be undertaken in the first quarter of 2014 and submitted to WHSSC. Annual audit and progress report for 2014/15 to be submitted to WHSSC by end of June Annual report by exception from 2016 onwards Key Performance Indicators Performance against the KPIs in section 4.2 will be reported to WHSSC on an annual basis. Annual Cardiac Audit Data from the ACHD service will be presented at the annual Cardiac Audit Day held in November each year. Page 11 of 14

12 4.2 Key Performance Indicators The providers will be expected to monitor against the following target outcomes on an annual basis: Follow-up and monitoring % of patients with simple / moderate/ complex disease reviewed in outpatients department at the optimal time interval OPD DNA rate Care in Pregnancy % of pregnant women with ACHD suffering unexpected complication or death in pregnancy Adverse fetal or neonatal outcome related to CVS complication of pregnancy in women with ACHD Transition % of patients who have had an introduction to either a transition nurse or GUCH nurse In-patient care % of admitted patients with congenital heart disease seen by a GUCH specialist during their admission % of patients undergoing procedures that have been discussed in a MDT setting Outcomes Acute arrhythmia requiring emergency intervention in patients with ACHD Admission with acute heart failure with ACHD New neurological deficit in patients with ACHD Unexpected death/years lost The service will provide commissioners with the following information on a monthly basis by LHB: Page 12 of 14

13 List monitoring information, e.g. Number of patients awaiting assessment, waiting times, DNAs, etc. Page 13 of 14

14 5. Equality Impact and Assessment The Equality Impact Assessment (EQIA) process has been developed to help promote fair and equal treatment in the delivery of health services. It aims to enable Welsh Health Specialised Services Committee to identify and eliminate detrimental treatment caused by the adverse impact of health service policies upon groups and individuals for reasons of race, gender re-assignment, disability, sex, sexual orientation, age, religion and belief, marriage and civil partnership, pregnancy and maternity and language (welsh). This policy has been subjected to an Equality Impact Assessment. The Assessment has shown that there will be add in what the outcome was. Page 14 of 14

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