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.

Helpful places to start

Adults

British Heart Foundation - Support - BHF

Somerville Heart Foundation https://sfhearts.org.uk/ 

Youth Services https://sfhearts.org.uk/support-services/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 25years – referrals to him are via the congenital heart disease clinical nurse specialists)

Little Hearts Matter - Single Ventricle Heart Condition Charity - Little Hearts Matter

 

Children and young people

Youth Services https://sfhearts.org.uk/support-services/youth-services

Heart Heroes -  Join us | Heart Heroes

Little Hearts Matter - Single Ventricle Heart Condition Charity - Little Hearts Matter

Children's Heart Federation: www.chfed.org.uk

 

Antenatal and newborn baby

Tiny Tickers www.tinytickers.org

 

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.

Children  Psychology Webinar Series - Living with a Cardiac 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.

 

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. Your GP, NHS link 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 are helpful places to start to find out about support local to you to help with coping with how you are feeling.

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

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

 

Bristol (South West England)

Paediatric CHD – please download the BRHC patient leaflet to find out more: https://uhbw.mystaffapp.org/14093/document_view.pdf

Adult CHD – please download the BHI patient information leaflet to find out more:  https://uhbw.mystaffapp.org/9807/document_view.pdf

BHI psychology website: Grown up congenital heart disease | University Hospitals Bristol NHS Foundation Trust

 

Useful reading for those living or supporting others with a heart condition

Parents

Young Adults

Adult CHD

     

       

      We hope you find these pages useful and would welcome any feedback to Vanessa.Garratt@uhbw.nhs.uk 

      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

      Find out more

      A webinar series focussed on well-being for parents of children and young people with heart conditions

      Find out more