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

2. What is congenital heart disease ?
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 ventricle 2. Left atrium                    6. Right ventricle 3. Mitral valve                  7. Tricuspid valve 4. 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. The Case for Change Survival rates are good.
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. The “new CHD review” The review aims to help the service:
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. Objectives The new CHD review has six objectives:
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
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. How do I get involved? You can engage with the review further by:
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
The standards are based on having three levels of CHD services for children and adults. These are:
specialist surgical centres (level 1);
specialist cardiology centres (level 2); and
local cardiology centres (level 3).

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. What we heard A good network should: be clearly defined
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. What we are proposing The creation of networks.
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. What we are proposing The shape of networks will vary.
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. Section B: Staffing and Skills
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. What we heard The emotional needs of patients need to be addressed.
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. Interdependencies Three types of interdependency described:
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. What we heard about co-location
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. Section K: Fetal diagnosis
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 to test for CHD at weeks have not been fully implemented.

32. What we heard The following areas were also thought important:
Section K: Fetal Diagnosis
What we heard
The following areas were also thought important:
adequate and continuous training for sonographers a national fetal anomaly register;
more funding for ultrasound; and
more coordinated working as part of a fetal network.
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 fetal cardiac 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. What we heard A booklet on ‘How to find us/About Us’ would be useful
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 centres and 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. Section H: Communication with patients
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. What we heard The importance of sensitive and caring communication.
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. What we heard Transition can be difficult for young people.
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. Section J: Pregnancy and contraception
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

51. Section J: Pregnancy and contraception
What we are proposing
Discussions with a consultant cardiologist and specialist nurse.
Access to genetic counselling and information about contraception and recurrence risks.
Each Specialist ACHD Surgical Centre (level 1) must be staffed by Specialist ACHD cardiologists with expertise in pregnancy.
Individualised care plans that cover the antenatal and postnatal periods as well as pregnancy.

52. Section J: Pregnancy and contraception
What this will mean
Patients will be able to make informed choices in relation to contraception, termination, pregnancy and maternity
Pregnant women will be cared for in the most appropriate setting

53. Section L: Palliative care and bereavement
New Congenital Heart Disease Review
Section L: Palliative care and bereavement
Sets out the support to be provided at end of life and how to manage communication with families at this difficult time.

54. Section L: Palliative care and bereavement
What we heard
Families and carers depend on psychological, social, spiritual and practical support at this very difficult time.
Excellent and open communication is key.
We have heard that staff need to be trained in how to break bad news.

55. Section L: Palliative care and bereavement
What we are proposing
How CHD services should support patients and families at this time with the help of other existing teams.
A lead doctor and named nurse to be chosen by the multi- disciplinary team and the patient and their family/carers.
The development of an individual end of life care plan.
The support that must be given to bereaved families and carers at the time of death and afterwards.

56. Section L: Palliative care and bereavement
What this will mean
Patients, families and carers receive all the support they need at the end of life whether that be in the hospital or in the community, including at home.
Networks and centres will work together to agree and deliver appropriate care and support.

57. 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

58. New congenital heart disease review
Training and education, Organisation, governance and audit, Research and Dental
Consultation September– December 2014

59. Section E: Training and Education
New Congenital Heart Disease Review
Section E: Training and Education
Sets out the requirements for continuing training and education for healthcare professionals involved in the care of those with congenital heart disease, in order to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

60. What we heard Communication and listening skills are very important
Section E: Training and Education
What we heard
Communication and listening skills are very important
Help is needed in maintaining skills. 
All members of MDTs should learn from each other.

61. Section E: Training and Education
What we are proposing
All healthcare professionals involved in the care of people with CHD to stay up to date through continuing training and education.
CHD networks will promote education and training in, and across, local centres.
Standardised, competency based training and education across all networks.

62. Section E: Training and Education
What this will mean
Patients, families and carers will be cared for by staff who are appropriately trained in the skills needed to perform their jobs.
Networks and centres will have the right processes in place to train staff appropriately.

63. Section F: Organisation, governance and audit
New Congenital Heart Disease Review
Section F: Organisation, governance and audit
Sets out systems to ensure good decision making and quality improvement, including learning from local data and experience to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

64. Section F: Organisation, governance and audit
What we heard
The way information is collected and used varies across centres.
Too many operations were cancelled at short notice.
It is important that information sharing between agencies is handled appropriately.

65. Section F: Organisation, governance and audit
What we are proposing
Surgical centres have a dedicated management group for the internal management and coordination of service delivery.
A robust and documented clinical governance framework.
Regular Network meetings.
Information about activity and results to be submitted to the national audit run by NICOR.

66. Section F: Organisation, governance and audit
What this will mean
Clearly organised systems focused on patient care and improved outcomes.
Close monitoring of the outcomes from surgery and interventional cardiology.
Networks and centres have the right processes in place to deliver quality outcomes based on robust information and audit systems.

67. New Congenital Heart Disease Review
Section G: Research
Sets out a requirement for networks to have and regularly update a research strategy and research programme to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

68. Many hospitals have close ties with Universities.
Section G: Research
What we heard
Many hospitals have close ties with Universities.
What we are proposing
A new commitment to research that ensures that all services are continually focused on improvement, development and innovation.
Each Network will have close links with one or more academic department(s) in Higher Education Institutions.

69. Section G: Research
What this will mean
Patients, families and carers will benefit from research.
Networks and centres will be able to keep adding to their knowledge and understanding.

70. New Congenital Heart Disease Review
Section M: Dental
Sets out how to ensure that congenital heart disease patients receive good dental care, to deliver the best possible outcomes within existing resources. This covers all three tiers of the service.

71. Section M: Dental
What we heard
It is important for people with CHD to receive appropriate dental care because of the risk of endocarditis (infection of the lining of the heart and valves, or both which can start as an infection of the gum).

72. Section M: Dental
What we are proposing
Clear referral pathways for urgent dental assessments for certain patients.
All patients admitted and diagnosed with infective endocarditis must have a dental assessment within 72 hours.
Centres must be able to provide access to theatre facilities and appropriate anaesthetic support for dental procedures, or refer patients to the Specialist Surgical Centre.

73. Section M: Dental
What this will mean
Patients who are at risk because of dental problems are identified and treated.
Networks and centres will have the facilities to undertake dental surgery on CHD patients where needed.

74. 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