Have you heard of the Oesophageal Patients Association?
Maggie Robinson, Operations Manager
13th September 2019
The Oesophageal Patients Association (OPA) is an independent registered charity formed in 1985 when a few former oesophageal cancer patients met and found tremendous reassurance in sharing experiences. Since then, we have helped thousands of patients and carers. The members and subscribers of the Association are all patients who have experienced oesophageal or gastric difficulties, not forgetting the hard work of their carers of course and the support of their friends and families. We have prepared medically approved booklets and fact sheets on the problems, which we can talk about at first hand, understanding the fears that can be generated, the pains that can be suffered and the effects on the digestive system that can be experienced.
Informal meetings for patients and carers (family or friends) are regularly held at regional centres around the UK. Problems are aired and suggestions for overcoming them are exchanged. The essential aim is to enable new patients and carers to meet and talk to former patients and carers who need advice and help.
The OPA works in two main areas – support and awareness:
- We support patients and carers through our telephone helpline, by providing information on our website and in our series of booklets, ‘A Guide to Life After Oesophageal/Gastric Surgery’, ‘Swallowing & Nutrition – when it’s difficult’, ‘Notes for a Carer’, ‘Recipes for When Food is a Problem’, ‘Oesophagogastric Cancer The Patients Pathway’ and our dvd ‘What to Eat now’ and of course patient to patient through our patient support groups.
- We provide telephone support to over 2,000 callers every year, our helpline is open 365 days every year.
- Our booklets, which are endorsed by medical experts, are sent free of charge to anyone who asks for them and to GP’s, clinical staff at NHS hospitals and trusts, Maggie’s Centres and Macmillan Centres.
- Our support groups, run by volunteers, provide an opportunity for patients and carers to meet one another and discuss their experiences as well as to listen to guest speakers, such as surgeons or dieticians. These meetings help patients come to terms with their condition before and after their treatment, see our patient meetings page on our website for meeting dates, venue and contact details.
- We also try to make people aware that certain symptoms should not be dismissed as just the effect of age or an unhealthy diet, but should prompt a visit to a doctor. Many more lives could be saved, and much suffering avoided, if people made an appointment with their GP after a few weeks of symptoms.
We receive no government support and depend entirely on grants from Charitable Trusts and donations from individuals.