Support for Affected Patients and Families
Support services have been divided into 3 categories.
- Counselling and Advice (this page)
- Financial Support (Benefits, Entitlements and Grants): link
- Facilities, Days out, Holidays etc available free of charge: link
Counselling and advice
There are many options available for free counselling and advice in the UK, including the following:
- Your GP
- The Fanconi Anemia Research Fund’s (FARF) family support programme services, available to families internationally. Please contact their Director of Family Support Services, Teresa Kennedy.
- CLIC Sargent. Although primarily a cancer charity they will support children with FA They have Social Work Teams in most major hospitals and it is highly recommended that you contact them as they can provide help and support in a number of ways.
- Contact-a-Family. A child with FA may required extra support associated with their condition. Parents may be entitled to some additional financial help or your child may need support at school. Contact a Family supports families who have children with any health condition or additional need. They have a freephone helpline staffed by advisers (including a genetics counsellor) who can help with a wide range of topics including grants/funding. They also produce a wide range of publications that you may find useful, for example, for siblings. Visit their website for more information about their services or call their freephone helpline on 0808 808 3555 available Mon-Fri 10am-4pm and Mon evening 5.30-7.30pm.
- Sibs for a sibling with a disabled or chronically ill brother or sister.
- Parents of Disabled Children: Bulletin Board for seeking answers from other parents.
- Bereavement Support and Conselling:
- Winston’s Wish is the leading childhood bereavement charity and the largest provider of services to bereaved children, young people and their families in the UK.
- Child Bereavement UK is the UK’s leading national organisation that supports families and provides training to professionals across the entire spectrum of child bereavement. database of organisations that offer support to bereaved families and the professionals who care for them. They have a searchable database containing contact details of bereavement-related help and support services in the United Kingdom.
For FA patients with cancers
- Leukaemia Care: for patients with blood and lymphatic cancers
- UK McMillan Cancer Support Support for Families living with Cancer:
- Mouth Cancer Foundation: The Mouth Cancer Foundation was established in June 2004 to be a professional support organisation solely dedicated to supporting people with mouth, throat and other head & neck cancer. Provides counselling and support for patients and families. Individual counselling sessions for people with cancer and their loved ones; conducted in person, over the phone and via the Internet.
• providing a telephone helpline and education led by experts
• providing an online support group and interactive Web community
• providing assistance for those who need it most.
• assisting with obtaining financial assistance for things such as pain medication, homecare, childcare, and transportation to and from treatment;
Information on financial support (Benefits, Entitlements and Grants) can be found here
Information on facilities, free days out, holidays etc can be found here