Support Available
- You can make use of the following services which are provided free through the National Lottery-funded Better Together for Healthy Bone Marrow Programme of which Fanconi Hope is a member.
- Mental health and wellbeing services, which include webinars, courses and 1:1 support. How to apply
- You can speak to our Benefits Advisor on a 1:1 basis. How to apply. Watch the Benefits Webinar by our advisor Robert Mandlestam. You can also download an information Sheet on financial support (Benefits, Entitlements and Grants) can be found here
- Financial Support (Benefits, Entitlements and Grants): here
- Trips, Events,Wishes, Holidays etc available free of charge and accommodation for family members when your child is in hospital: Download the Information Sheet
Further Support Available
There are many options available for free counselling and advice in the UK, including the following:-
- Mental health and wellbeing support services which are provided free through the National Lottery-funded Better Together for Healthy Bone Marrow Programme of which Fanconi Hope is a member, This includes webinars, courses and 1:1 support. How to apply.
- Your GP
- The Fanconi Cancer Foundation’s (FCF) family support programme services, available to families internationally. You are encouraged to register with them. FCF’s mission is to support families worldwide, not just in the USA and we work closely together with them in an informal partnership.
- 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.
- CLIC Sargent. Although primarily a cancer charity they will support children with bone marrow failure conditions too. 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.
- Bereavement Support and Counselling:
- 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 supporting families and providing training to professionals across the entire spectrum of child bereavement. They have a searchable database containing contact details of bereavement-related help and support services in the United Kingdom.
For FA patients with cancer
- 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. - Tenovus Cancer Support Helpline: for patients with cancers. Call Helpline on 0808 808 1010.