Supporting our patients through their congenital heart condition and journey is a key Network priority.
Patients and families often have a number of questions, worries or concerns in relation to their or their loved one's cardiac condition. There are a number of types of support available and different services they can access according to their level of need.
Getting support +
For young people, families and adults who are looking for general support with their mental health there are a number of support groups charities and NHS organisations that can help.
Adults
(South West and South Wales CHD Youth Worker is available for young people up to the age of 25years – referrals to him are via the congenital heart disease clinical nurse specialists)
Youth Services at Somerville Heart Foundation
Children and young people
Youth Services at Somerville Heart Foundation
Little Hearts Matter - Single Ventricle Heart Condition Charity
Neonatal and newborn
A fuller list of charities can be found on the network charities page: https://www.swswchd.co.uk/en/page/charities
Information from the clinical teams +
Information from the Clinical Teams
If young people, families and adults would like more information about coping with a heart condition and coming into hospital there are a range of toolkits written by the psychology team that you can direct patients too. There is information for children, young people, parents and adults on many topics including sleep, coping with anxiety, coming into hospital and supporting siblings.
Toolkit: Wellbeing toolkits (for children, teenagers, adults, parents)
We also have webinars you can look at to find out about living with a heart condition: Psychology Webinar Series - Living with a Cardiac Condition (paediatrics)
We have developed a number of online resources for adults living with a congenital heart condition:
- Mental health resources for people living with a congenital heart condition
- Living well with a congenital heart condition
The tips and tricks for managing on the ward for Adult Congenital Heart Disease patients - leaflet may also be helpful if you are heading into hospital.
QR code posters signposting to patient information leaflets
Wellbeing resources for Children and Young People:
Wellbeing resources for Parents/Carers:
1:1 support
For young people, families and adults who are looking to talk to someone about how they are feeling you can direct them to their GP, or the NHS therapy services, NHS talking therapies for anxiety and depression - NHS and the Hub of Hope website Mental Health Support Network provided by Chasing the Stigma | Hub of hope which can help families and adults find local support
Young people, families and adults who would like support to cope with their or their child’s heart diagnosis, coming into hospital for treatments, and the impact of a heart condition they may be able to access psychological support through the local specialist cardiac centre. For more information, please see the leaflet for your local centre and the details for how to access support.
Urgent Support
If there are clear and significant concerns about current risk of harm to self, suicidal ideation and/or a young person and adult presents with a pre-existing mental health conditions includin hearing voices, an eating disorder and/or involved with mental health services, please direct them to NHS '111' or visit A&E.
Adult CHD Psychology Referral criteria - South Wales & South West England +
South Wales Adult Congenital Heart Disease Service:
We aim to make stresses and difficulties of living with congenital heart disease more manageable through:
- Talking through decisions people may be struggling to make about their heart condition
- Working with people to manage any phobias that are preventing them from having treatment (e.g. needle phobia)
- Helping people cope with symptoms such as anxiety and depression that are a result of living with CHD
- Helping people cope with symptoms such as anxiety and depression that are affecting their ability to manage their condition
- Helping people live well as they approach the end of their lives
- Working with other members of the CHD team to help support patients psychologically
Group support:
All patients can be referred for our peer support and wellbeing activities. These activities will change throughout the year. Our current activities include a wellbeing arts group and singing sessions held in collaboration with Daring to Dream and Choirs for Good.
One to one psychological assessment and intervention
The Psychology Services specialises in helping people cope with and adjust to the emotional stresses of living with congenital heath disease. We are always happy to talk to you about a patient you are concerned about.
PLEASE NOTE: Our service is not an emergency service and we are unable to provide crisis support. If you are concerned about a patient’s immediate wellbeing and feel that they or someone else is at risk of coming to harm, please contact their GP (or CMHT if applicable)/out of hours GP and request an emergency assessment or dial 999. Current inpatients can be referred to Liaison Psychiatry for rapid assessment and support.
Consultation and advice
We are available to discuss how best to consider and address a patient’s psychological need when providing MDT care. This can include requests for informal advice or consultation and also requests for us to attend MDT meetings. Please contact our Psychology team on: cardiac.psychology@wales.nhs.uk for more information
Bristol and South West England - Adult Congenital Heart Disease Service
To find out more, please view:
BHI patient information leaflet
Paediatric CHD Psychology Referral Criteria - South Wales & South West England +
Paediatric CHD Referral Criteria, South West England & South Wales
You can ask for support for both inpatients and outpatients around the following areas:
- Difficulty in coping with or adjusting to health condition/status e.g., further cardiac surgery required, poor prognosis, life limiting illness, concerns about heritability of CHD, or significant impact of cardiac condition on day to day functioning
- Parental support with adjustment to the diagnosis to or treatment of their child’s cardiac condition and signposting to longer term emotional support if necessary.
- Distress related to a long hospital admission for their cardiac condition.
- Distress associated with physical issues such as scars and symptoms such as pain, cyanosis, breathlessness, and tiredness.
- Trauma associated with past medical interventions (e.g., MRI, CT scan, ICD implantation, Catheter implantation, Cardiac surgery) and hospital and needle phobia
- Parental emotional support related to their unborn or newborn baby’s cardiac condition
- Anxiety related to upcoming medical procedures
- Additional needs (including learning disabilities) requiring further support when accessing treatment
Bristol & South West England - Paediatric CHD Service
Please download the BRHC patient leaflet to find out more.
You can refer to the service through the Medway service order, families can request this from their local team. All referrals must be through the electronic service order into the psychology team single point of entry.
If you would like to discuss a request for Psychology, approaches to supporting a family or advice around signposting or resources please contact us:
- 01173428168
We aim to see outpatients within 6 weeks and inpatients within 2 working days.
Cardiff & South Wales - Paediatric CHD Service
To discuss a referral to the Paediatric psychology service please contact them on:
- 02921 847750
- Paed.psych.cardiology.CAV@wales.nhs.uk
