GUIDELINES
Consultation on the future delivery of Congenital Cardiac Surgery and
Interventional Cardiology for the population of Northern Ireland.
Children’s Heartbeat Trust have developed guidelines for heart parents and families to
consider when responding to the above consultation.
These are not intended to replace your own responses, but to offer suggestions about areas
for consideration.
TIPS
1. Read the entire document through completely and note down your first thoughts and
comments. Read and familiarise yourself with the questionnaire.
2. Read through the document for a second time bearing in mind the questions you are
being asked to respond to.
3. If you have any questions or want clarification on the document contact Sarah from
Children’s Heartbeat Trust on 07584 164 815/ sarah@childrensheartbeattrust.org.
4. If applicable, relate your comments and response to your own personal experiences and
feelings –don’t be afraid to draw on personal stories.
5. The questionnaire will not cover all the issues you may wish to raise. It allows room for
you to include other issues or comment at the end and you should do so. It is vital that you
communicate all your thoughts and opinions.
6. Write as much as you want or need to. Do not be afraid of repeating yourself if you think
your comment is relevant in more than one area. Add extra pages and use your handwriting
if required.
7. The most important thing is to RESPOND! We need as many people as possible to
respond to this consultation to illustrate how important this issue is. Encourage your family
and friends to respond as well!
8. Sit down with your child and discuss your responses. If you feel it is appropriate, you can
submit a response on your child’s behalf also, or help them complete a response.
1. a) & b)
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An all island Governance committee with appropriate representatives from both
jurisdictions’ is crucial to underpin partnership delivery of service.
Meets regularly with compulsory attendance required.
Considers all island concerns and issues, including the service provision, budget and
governance considerations.
In place to ensure independence, transparency and confidence in the process.
2.
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A Family Advisory Group is key to ensure that the service is working for those it most
directly affects, the patient and patient’s family.
The group should be a group at which families concerns, issues and feedback
(positive and negative) will be considered and actioned.
Membership to include attendees from both jurisdictions who can represent and
access a range of family’s opinions and be able to present appropriately to the
group.
Membership to include clinical representatives and family support staff from both
jurisdictions that have direct dealings with families throughout all elements of their
child’s treatment
The group should have a mechanism in place to enable its recommendations or
concerns to be actioned and responded to by the appropriate departments or
providers
The group should be provided with up to date and accurate information about the
current service outcomes, transport provision and other information as requested.
The group attendees should have appropriate means of communicating activities or
actions of the Family Advisory Group to as wide a number of families as possible.
Regular meetings, with opportunity for families and parents to attend or observe if
they wish.
Confidentiality issues observed.
3.
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Need for regular audits and measuring of outcomes
Central database should be kept up to date and accessible for interested parties
Central database to include waiting times and other issues outside of solely surgical
or interventional outcomes such as number of times surgery cancelled, length of stay
in hospital and any other relevant information.
4.
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Essential that the deployment of staff is undertaken on a partnership basis, with a
mutually beneficial offering for staff, that is not simply Belfast staff having to travel
down to Dublin.
Families and patients should have opportunity to meet with the team responsible for
their treatment beforehand to answer any questions and discuss the treatment plan.
For Northern Irish families this will take place in Belfast.
Northern Irish families should be able to access all their outpatients clinics, whether
cardiology or surgical in Belfast with the appropriate clinicians attending.
The surgical centre in Dublin will be able to provide an appropriate environment for
Belfast based clinicians to continue undertaking catheterisations, anaesthetics and
other medical requirements for children from Northern Ireland as needed.
Development of shared nursing skills programmes across the jurisdictions
Training and Education opportunities are equally apportioned across the two
centres.
5.
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A priority that children receive highest level of care and treatment possible in a
timely manner
Funds to ensure this is the case should be made available from both jurisdictions
with the aim of benefitting the patient
Specific investment should also be made to paediatric cardiac services in Belfast to
strengthen its paediatric and adult congenital cardiology provision
6.
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Improved telemedicine links should be a central element to the communication
between Belfast and OLCHC
Opportunities to use the latest technology should be monitored and implemented as
suitable to enable accurate and timely sharing of clinical information
Telemedicine links should be extended to outlying hospitals to enable quicker
communication and diagnosis.
7. a) & b)
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Travel to Dublin for surgical or interventional treatment should only occur when
essential.
Development and strengthening of all other non-surgical care and treatment at
Belfast
Any clinical transfers need to be timely according to the patient need
Equal priority to treatment across the jurisdictions is essential
Important that there is a seamless pathway of care between paediatric and adult
services with a joint approach from both services
Adolescents need to have access to appropriate beds and facilities
Development of transition clinics and transition nurse posts funded
Age appropriate information and advice available
Particular consideration for service provision for young people with learning
disabilities.
8.
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Patient and family services should also be enhanced in Belfast with at least another
full time specialist nurse to support patients and families having to travel for surgery
Parent accommodation, daily expenses including car parking and any unavoidable
upfront costs in Dublin should be covered by the appropriate Department.
Consideration needs to be given to the practical issues of receiving care and
treatment in a different jurisdiction; currency, phone providers, insurance etc.
9.
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Very important that our specialist nurse teams are strengthened to provide seamless
care, information and support to patients and family support.
Communication between the two centres and the specialist nurse teams will be
central to ensuring an unbroken care pathway with individual patient and family
needs taken into consideration.
Each patient should have a named specialist nurse responsible for providing care
between the two networks.
Enhanced specialist nursing service for our fetal cardiology services
10.
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Essential that the transport services across the network are developed, effective and
can respond appropriately to emergency and critical care needs.
Regular meetings with clear protocols and guidelines in place for the transport
service
11.
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A mobile ECMO service is a fundamental element to the success of the network
service
In an emergency children need to be able to access ECMO if required in order to
travel safely to Dublin safely
Fully trained staff in Belfast to be able to put a child on ECMO safely and/or travel
with the child to Dublin
12.
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Telemedicine links to be further developed and enhanced
At forefront of new developments and telemedicine advances
Telemedicine not to completely replace meeting with fellow clinicians and face to
face discussions
All discussions accurately documented and agreed to ensure transparency
13.
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Important that all safety incidents reviewed and reported upon to improve future
understanding and responses
All morbidity and mortality data should be recorded and reviewed.
All data outcomes should be examined against national and international standards
14.
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Important to have an annual event to share feedback, views and developments.
This symposium should be held at a time and venue where it is convenient for
parents and families to attend if they wish
Important governance check on the overall running of the network and to consider
future provision needs.
Further Comments
You may want to expand on topics as above or consider further areas including
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Provision of clinical psychology team
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Need for more paediatric cardiac physiologists in Belfast service to deliver
strengthened cardiac provision
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What approach is taken towards end of life care? What consideration has been
given to the ultimate tragedy of a child dying and how will the family be supported
and/ or helped with all associated aspects of this?
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A focus on maintaining Belfast’s international reputation within the field of research
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Introduction of pulse oximetry screening of new-borns, to increase diagnosis of
babies born with complex heart defects before they go home only to return in a
critical condition.
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What is in place for families with an antenatal diagnosis? A clear, regularly updated
plan is needed throughout pregnancy and communicated to the family.
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Further consideration needed on extra support needed for patients with learning
disabilities
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Investment and funding available as required to ensure that children and young
people with heart disease in Northern Ireland can still access the highest standard of
care as close to home as possible.
** Central to the success of Belfast as a Specialist Children’s Cardiology Centre – will be a
purpose built building housing all the elements of a strengthened children’s cardiology
service including outpatients, imaging, clinics, day cases, adolescent provision, diagnosis and
treatment.**