The impact of OA/TOF on families and TOF Adults can be significant and it’s important that you take care of your mental health. Thankfully there are lots of places you can turn to for mental health support.
IAPT – NHS
Improving Access to Psychological Therapies, access to talking therapies and help with common mental health services provided by the NHS.
Contact – for families with disabled children
UK charity which signposts parents to relevant support groups. CaF also provides resources on a range of issues (including benefits and rights) and offers the support of a Welfare Rights Officer. Directory for specific conditions, rare disorders and UK Family Support Groups.
An online SOS solution system for care-based essentials where members can request immediate assistance in unforeseen circumstances. For example – you are on holiday and find you have forgotten a vital piece of equipment. This site may help to locate somebody nearby who can help.
Special Needs Kids
Information directory and shopping site to help parents and carers of children with special needs. Information on products, sources of support and much more.
European Association for Children in Hospital
Charter listing the rights of children before, during or after a stay in hospital. Action for Sick Children (see link above) are members of this Association.
A Little Deep Sleep – a guide to anaesthetics
A family guide to anaesthetics, which aims to ease anxieties children may have about anaesthetics, giving them a clear idea about what might happen during their hospital visit.
IA Friends UK
A private Facebook support group for adults and parents of children in the UK affected by the congenital condition Anorectal Malformation / Imperforate Anus.
Anorectal malformations & Hirschsprung’s disease sexual support website
Designed to support patients with Hirschsprung’s disease and anorectal malformations, their parents and healthcare professionals.