Fetal

Advice and Support

  • Advice
    Contact the Children’s Cardiac Nurse Specialist team if you need information, advice or support on 0113 392 5467 or Email ccns.lgi@nhs.net

  • Support from the hospices in our Network

    Children’s hospices provide 24 hour care and support to children and their families. They are a team of professionals made up of doctors, nurses, midwives, play specialists, care staff, complimentary therapists, counsellors, physiotherapists, music therapists and volunteers.
    The teams are experienced in caring for babies, children, young people and their families who are affected by complex conditions. They can also offer support before your baby is born. They offer support from a Children’s Hospice setting or their Hospice at Home service which can help you in your own home.
    They offer a number of services tailored to meet the individual needs of you and your family. As well as nursing care they can provide –
    Respite / Short breaks– Overnight stays as well as day care for children during term time and holidays. This can be specifically for the child or it can be stays as a family (and pets). All facilities are available for family groups.
    Emotional support – This is available to all family members including parents, grandparents and siblings. There are dedicated sibling days, events and sibling support workers.
    Play support – Support can be offered through play, music and creative therapies. Children’s Hospices have play rooms, music rooms, multi-sensory rooms as well as large outdoor gardens and hydrotherapy or spa pools.
    Homemade meals are provided by in-house chefs and they can accommodate any of your dietary requirements.

    End of life care is also offered in all Children’s Hospices or together in a home setting. Staff are experts in this area and their priority is comfort and symptom control. They offer memory making opportunities, emotional support and counselling to ensure your family feel well supported. Bereavement support is offered in many forms and will be tailored to your individual needs.
    There is no charge to families for using any of the services provided by your local Children’s Hospice.

  • Martin House – Wetherby

  • Support groups
    These groups provide information and support for parents/patients. A list of these support groups are situated at the back of the folder.

    They can provide all kinds of useful information and advice for those caring for a sick child.

  • Antenatal results and choices

    Tel: 0845 077 2290
    http://www.arc-uk.org/

  • Arrhythmia Alliance

    Tel: 01789 450787
    www.heartrhythmcharity.org.uk

  • British Heart Foundation

    Tel: 0300 330 3311
    www.bhf.org.uk

  • Cardiomyopathy Association

    Tel: 0800 018 1024
    www.cardiomyopathy.org

  • Children’s Heart Federation

    Tel: 0808 808 5000
    www.chfed.org.uk

  • Down’s Heart Group

    Tel: 0844 288 4800
    www.dhg.org.uk

  • Little Hearts Matter

    Tel: 0121 455 8982
    www.lhm.org.uk

  • Max Appeal!

    Tel: 0300 999 2211
    www.maxappeal.org.uk

  • Soft UK

    www.soft.org.uk/

    Support for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.

  • Tiny Tickers

    Aiming to improve the detection, diagnosis & care of babies with serious heart conditions, before & immediately after birth.
    www.tinytickers.org

  • Turner Syndrome Support Society

    The Turner Syndrome Support Society is a national charity caring for the needs of those with Turner Syndrome throughout the United Kingdom.

    https://tss.org.uk/