New congenital heart disease review

1. New congenital heart disease review Consultation September – December 2014

2. New Congenital Heart Disease Review What is congenital heart disease ? • Congenital heart disease is a general term for a range of birth defects that affect the normal workings of the heart. • The term congenital means the condition is present at birth. The human heart 1. Pulmonary valve          5. Left ventricle2. Left atrium                    6. Right ventricle3. Mitral valve                  7. Tricuspid valve4. Septum                         8. Right atrium

3. New Congenital Heart Disease Review Key Facts Around eight out of every 1,000 babies born have some form of congenital heart disease (CHD). More babies with CHD are now surviving into adulthood. NHS cardiac surgery for children is carried out in 10 hospitals in England.

4. New Congenital Heart Disease Review The Case for Change • Survival rates are good. • But other factors are important too, including: • Quality of care • Quality of life • Variations in care • How can we improve the service?

5. New Congenital Heart Disease Review The “new CHD review” • The review aims to help the service: • Secure the best outcomes for all patients (not just lowest mortality) • Tackle Variation • Improve patient experience.

6. New Congenital Heart Disease Review Objectives • The new CHD review has six objectives: • Develop best practice standards • Analyse current and future demand for services • Make recommendations on function, form and capacity of services needed • Make recommendations on the commissioning and change management approach • Establish a system for the provision of information about the performance of CHD services • Improve antenatal and neonatal detection rates.

7. New Congenital Heart Disease Review Standards • Our standards cover all aspects of running a service with the aim of improving care. • For the first time there will be: • a single set of standards and specifications for children and adults • a single national commissioner (NHS England) for congenital heart services.

8. New Congenital Heart Disease Review Areas covered Section A: The network approach Section B: Staffing and skills Section C: Facilities Section D: Interdependencies Section E: Training and education Section F: Organisation, governance and audit Section G: Research Section H: Communication with patients Section I: Transition Section J: Pregnancy and contraception Section K: Fetal diagnosis Section L: Palliative care and bereavement Section M: Dental

9. New Congenital Heart Disease Review What next ? The Consultation is due to run until the middle of December 2014. The aim is to have approved standards and specifications by March 2015. Once agreed all providers will be expected to meet the standards. Some of the changes will not happen immediately.

10. New Congenital Heart Disease Review How do I get involved? • You can engage with the review further by: • Watching the YouTube videos • Reading the consultation document, easy read version or the complete standards and service specifications • Attending a consultation event • Completing our online questionnaire. • (Links to all resources referred to above are included in the description section of this video)

11. New congenital heart disease review Networks, Staffing and Skills, Interdependencies and Fetal Diagnosis Consultation September – December 2014

12. New Congenital Heart Disease Review Model of Care • specialist surgical centres (level 1); • specialist cardiology centres (level 2); and • local cardiology centres (level 3). The standards are based on having three levels of CHD services for children and adults. These are:

13. Section A: The Network Approach Sets out how all hospitals treating people with congenital heart disease will work together to deliver the best possible outcomes within existing resources. Networks include all congenital heart services, both adult and paediatric, at all three levels of the service. New Congenital Heart Disease Review

14. Section A: The network approach What we heard • A good network should: • be clearly defined • include all elements of congenital heart disease care • comprise high quality services • be large enough to be sustainable, but small enough to manage • have adequate resourcing • develop consistent care pathways • invest in developing individual relationships • across the network.

15. Section A: The network approach What we are proposing • The creation of networks. • That congenital heart surgery is only undertaken in specialist surgical centres. • Networks will consist of: • specialist surgical centres (level 1); • specialist cardiology centres (level 2); and • local cardiology centres (level 3).

16. Section A: The network approach What we are proposing The shape of networks will vary. Formal working relationships with other centres and specialisms. Weekly specialist multi-disciplinary team meetings. New standard health records summary.

17. Section A: The network approach What this will mean • Hospitals and clinicians working together locally, regionally and nationally. • Better experience for patients, their families and carers. • More joined-up services. • Quality is improved and standards are improved consistently across networks.

18. New Congenital Heart Disease Review Section B: Staffing and Skills Sets out the staff and skills needed in teams to deliver a world class service across all parts of the network to deliver excellent outcomes within existing resources. This covers all three tiers of the service.

19. Section B: Staffing and Skills What we heard The emotional needs of patients need to be addressed. Patients and their families need help to understand the health system as well as areas like benefits and education. There is a concern about current and future staffing levels.

20. Section B: Staffing and Skills What we are proposing The staffing and skills needed to ensure that a world-class service is provided across the country. The arrangements needed to ensure that there is consistent high quality care all year round. Minimum staffing and activity levels for surgeons, interventional cardiologists and other members of the multi- disciplinary team.

21. Section B: Staffing and Skills What this will mean • All centres will have the right staffing with the right skills. • Where necessary centres will refer patients to another unit or bring in expert support. • We expect an increase in the number of some staff groups at some centres.

22. Section D: Interdependencies Sets out the relationship congenital heart disease services (children’s and adults) have with each other and with other  services to deliver the best possible outcomes within existing resources. This covers all three levels of the service. New Congenital Heart Disease Review

23. Section D: Interdependencies Interdependencies • Three types of interdependency described: • paediatric cardiac services with other paediatric services; • adult congenital heart services with other adult services; and • paediatric cardiac services with adult congenital heart services. • Triple co-location is the ideal. • There were different views about the importance of each type of interdependency.

24. Section D: Interdependencies What we heard Specialist congenital heart services need to work with other services that are used by CHD patients, but are not CHD-specific.

25. Section D: Interdependencies What we heard Sometimes patients with CHD will need support from another specialist very quickly. Patients often have other problems as well as congenital heart disease and so need care from many specialists; not just heart specialists.   Sometimes the different teams of doctors do not work closely together. 

26. Section D: Interdependencies What we heard about co-location Some people told us that while responsiveness is important, it is not the only thing that matters: daily interaction between teams is also important in building relationships and ensuring the best care. Other people argued that as long as the other children’s services could meet the required response times it was not necessary for all the children’s services to be on the same site.

27. DELETED

28. Section D: Interdependencies What we are proposing Specialist children’s cardiac services should only be delivered in settings where a wider range of other specialist children’s services are also present on the same site (co-location). This brings the standards for CHD services into line with expectations in other specialist children’s services. Triple co-location is the ideal, but where this is not possible, we say which services must be on the same site, and what is the required level of responsiveness for all the other services.

29. Section D: Interdependencies What this will mean • All the experts patients are likely to need are on site, or available very quickly. • Centres will need to consider how to arrange services to ensure that they meet these standards.

30. New Congenital Heart Disease Review Section K: Fetal diagnosis Sets out the importance of providers working together in networks to ensure that national standards are consistently applied and results reported.

31. Section K: Fetal Diagnosis What we heard Detection is not as good as it could be and rates vary across the country.   We have heard that national standards introduced in 2010 to test for CHD at 18-20 weeks have not been fully implemented.

32. Section K: Fetal Diagnosis What we heard • The following areas were also thought important: • adequate and continuous training for sonographersa national fetal anomaly register; • more funding for ultrasound; and • more coordinated working as part of a fetalnetwork. • The time between the first suspicion of a problem and confirmed diagnosis needs to be reduced.

33. Section K: Fetal Diagnosis What we are proposing Arrangements to ensure that all women with a suspected fetalcardiac anomaly are seen more quickly by a specialist. Where there is a concern that a baby in the womb may have abnormalities of the heart, a firm diagnosis will be made as quickly as possible. At diagnosis, a plan will be developed that gives information about arrangements for delivery of the baby.

34. How do I get involved? You can engage with the review further by: Watching the YouTube videos Reading the consultation document, easy read version or the complete standards and service specifications Attending a consultation event Completing our online questionnaire

35. New congenital heart disease review Facilities, Communication with patients, Transition, Pregnancy and contraception and Palliative care and bereavement. Consultation September – December 2014

36. Section C: Facilities Sets out what facilities and equipment are needed to deliver care and treatment to people with congenital heart disease, to support families and carers, to deliver the best possible outcomes within existing resources. This covers all three tiers of the service. New Congenital Heart Disease Review

37. Section C: Facilities What we heard • A booklet on ‘How to find us/About Us’ would be useful • Facilities need to be welcoming, age appropriate and wheelchair friendly. • People need facilities where they can make their own meals • Wi-Fi needs to be available • Parking charges need to be reasonable or removed

38. Section C: Facilities What we are proposing We set out what facilities and equipment will be required in the different centresand say what information needs to be provided.

39. Section C: Facilities What this will mean • Facilities that will improve the overall experience of patients, their families and carers. • Patients, families and carers will be able to live as normally as possible during times spent in hospital.

40. New Congenital Heart Disease Review Section H: Communication with patients Sets out the importance of ensuring that patients of all ages, family and carers are able to participate actively in decision making at every stage in their care to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

41. Section H: Communication with patients What we heard The importance of sensitive and caring communication. Centres need to explain what is happening at all times. There needs to be a better way of sharing information across services Patients, families and carers would like information about living with CHD and what this means outside hospital.

42. Section H: Communication with patients What we are proposing Patients, their families and carers need to be told about what is happening at all times. Each patient will have an individualised care plan. Communication will be two way. Patients will be supported if they request a second opinion. The standards also set out processes for sharing information across services.

43. Section H: Communication with patients What this will mean • Patients, families and carers will have a better understanding of CHD, the care provided and what the options are. • Networks and centres will give them the information they need in a form that makes sense.

44. New Congenital Heart Disease Review Section I: Transition Sets out the importance of ensuring that young people can move smoothly from children’s to adult services in a way that respects individual circumstances, to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

45. Section I: Transition What we heard Transition can be difficult for young people. Transition needs to be planned carefully and personalised. People have suggested having young people’s wards and young people’s services.

46. Section I: Transition What we heard • We have heard that that there are a number of things that help young people transition well: • Dedicated transition nurses; • Young adult clinics; • Transition days; • Being able to speak to someone who has already gone through it (buddy system); and • Meeting the new consultant and ward staff before transition.

47. Section I: Transition What we are proposing Young people and their families will receive more support as they move between services. Children’s CHD services and adult CHD services to work more closely together to manage the transfer. Appropriate arrangements to ensure a seamless pathway of care, led jointly by paediatric and adult congenital cardiologists. Young people, parents and carers will be fully involved and supported in discussions about their care.

48. Section I: Transition What this will mean • Young people have the help and support they need as they move from children’s into adult services. • Young people experience a seamless transition and those young people who need ongoing support and treatment continue to receive it.

49. New Congenital Heart Disease Review Section J: Pregnancy and contraception Sets out the importance of appropriate discussions about family planning and describes the management of pregnancy to deliver excellent outcomes within available resources. This covers all three tiers of the service.

50. Section J: Pregnancy and contraception What we heard Pregnancy in women with CHD is becoming more commonplace. A close relationship between maternity and ACHD services is important