Supporting our patients and their loved ones through their congenital heart condition and journey is very important to the Network. On this page you will find information on the range of support available to you. There are different services you can access, depending on how much support you need at a given time.
We hope you find these pages useful and would welcome any feedback to Vanessa.Garratt@uhbw.nhs.uk
Helpful places to start +
There may be times when you feel you and or your child need support to cope with the impact of having a cardiac condition. A great place to start looking for support is through national charities and local support groups. On their websites you will find leaflets, videos and webinars on living healthily and emotional support.
They may also have groups and activities that you can join to meet people and talk about life with a heart condition.
It’s best to go to websites that are updated regularly and are part of an active charity or support group.
Adults
Somerville Heart Foundation Youth Services (you can create a free membership to Somerville Heart Foundation to access resources for young people)
- South West and South Wales CHD Youth Worker is available for young people up to the age of 25 years - find out more at Congenital Heart Disease Health Youth Worker
Children and young people
Congenital Heart Disease Health Youth Worker
Little Hearts Matter - Single Ventricle Heart Condition Charity
Somerville Heart Foundation Youth Services
Antenatal and newborn baby
A fuller list of charities can be found on the network charities page: https://www.swswchd.co.uk/en/page/charities
When you want to find out more +
You can also find out information about coping with your heart condition and coming into hospital from our toolkits written by our psychology teams in Bristol. 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 (childrens' services)
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.
When you feel you need more support for children and adults
There may be times when you feel you or your child would like to talk to someone about how you are feeling. Helpful places to start to find out about support local to you to help with coping with how you are feeling are:
- Your GP, NHS link NHS talking therapies for anxiety and depression
- Hub of Hope website Mental Health Support Network provided by Chasing the Stigma | Hub of hope
If you would like support to cope with you or your child’s heart diagnosis, coming into hospital for treatments and when it is impacting significantly on your life you may be able to access psychological support through your local specialist cardiac centre. For more information, please see the leaflet for your local centre and the details for how to access support.
Urgent concerns
If you have significant and urgent concerns about your safety or that of your child, please contact NHS ‘111’ or visit A&E.
Referrals for Psychology Support +
South Wales (Cardiff)
Paediatric CHD
To discuss a referral to the Paediatric psychology service, please contact: 02921 847750 or Paed.psych.cardiology.CAV@wales.nhs.uk
Adult CHD
To discuss a referral to the Adult psychology team, please contact: cardiac.psychology@wales.nhs.uk or the ACHD Clinical Nurse Specialist team on: Achdnurse.cav@wales.nhs.uk for more information
South West England (Bristol)
Paediatric CHD
Please download the Bristol Royal Hospital for Children patient information leaflet to find out more:
Adult CHD
Please download the Bristol Heart Institute patient information leaflet to find out more.
BHI psychology website: Grown up congenital heart disease | University Hospitals Bristol NHS Foundation Trust
Helpful reading for those living or supporting others with a heart condition +
Parents
Young Adults
Adult CHD
The toolkits describe a range of tools and techniques you can use to help you with issues that we are often asked about. You will find information, ideas and strategies to help with questions and worries you may have
A webinar series focussed on well-being for parents of children and young people with heart conditions
