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Report
New
congenital
heart
disease
review
Consultation
September – December 2014
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 human heart
The term congenital means the
condition is present at birth.
1. Pulmonary valve
2. Left atrium
3. Mitral valve
4. Septum
5. Left ventricle
6. Right ventricle
7. Tricuspid valve
8. Right atrium
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.
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?
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.
New Congenital Heart Disease Review
Objectives
The new CHD review has six objectives:
1. Develop best practice standards
2. Analyse current and future demand for services
3. Make recommendations on function, form and capacity of
services needed
4. Make recommendations on the commissioning and
change management approach
5. Establish a system for the provision of information about
the performance of CHD services
6. Improve antenatal and neonatal detection rates.
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.
New Congenital Heart Disease Review
Areas covered
Section A: The network
approach
Section H: Communication with
patients
Section B: Staffing and skills
Section I: Transition
Section C: Facilities
Section J: Pregnancy and
contraception
Section D: Interdependencies
Section E: Training and
education
Section F: Organisation,
governance and audit
Section G: Research
Section K: Fetal diagnosis
Section L: Palliative care and
bereavement
Section M: Dental
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.
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)
New
congenital
heart
disease
review
Networks, Staffing and
Skills, Interdependencies
and Fetal Diagnosis
Consultation
September – December 2014
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).
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
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.
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).
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.
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.
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.
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.
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 multidisciplinary team.
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.
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
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.
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.
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.
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.
DELETED
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.
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.
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.
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.
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.
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.
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
New
congenital
heart
disease
review
Facilities, Communication with
patients, Transition,
Pregnancy and contraception
and Palliative care and
bereavement.
Consultation
September – December 2014
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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
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.
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.
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 multidisciplinary 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.
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.
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
New
congenital
heart
disease
review
Training and education,
Organisation, governance and
audit, Research and Dental
Consultation
September– December 2014
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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

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