In November 1999, Ceila Myers, who was at the time head of the Stoma Care Dept at St Marks Hospital, asked Clare Bossom, Community Stoma Care Nurse for Harrow and myself to come in to see her. After a long discussion it was decided that we could best help the community by setting up a support group to deal with all forms of stomas (colostomy, ileostomy, and urostomy) rather than just concentrating on one stoma. The reasoning behind this was that there were already individual help groups for each of the stomas and we wanted to be unique, especially as we were attached to St Marks Hospital, which is well respected throughout the world. So yes, in one way we are unique as we help all stoma patients and support them and their families get through the trauma of what is happening to them and their body.
Since we have set up the group, we have helped a number of people come to terms with their stomas and guided them and their families so that they maintain a quality of life even though their lives have been turned around on their heads. It is after they were informed they have Cancer, Crohn’s Disease or Colitis and after trying everything else to no avail that they consider that there is no other alternative but to have a stoma of one kind or another. This is when our group comes into action. We have befrienders who, if they are needed (as some people deal with it their own way), attach themselves to the patient and his/her family. They help them to understand what is happpening, answer the non medical questions, are there for them in the beginning, see them when they have the operation and follow up after, to deal with any non medical problems the patient and the family may have, as a form of a life line.
Over the years this has worked very well and we have helped many ostomists since our fruition. We hold coffee mornings, in the out-patients department, level 3 of St Marks, every two weeks. The days change as we cover a number of Consultants both in the Medical and Surgery departments. We also hold Open / Information Days in St Marks once a year, in June, where we invite speakers and the manufacturers to come along. Ostomists can come and look at what is new, talk to other ostomists and hear the speakers talk about the new developments in their field of knowledge.
We became part of St Marks Hospital Foundation, in 2004, so that we could achieve charity status without creating another charity and the arrangement has been helpful to both parties. For us, because we have the clout that we would not have gained in our own right and for St Marks because they have the patient care side.
We produce a newsletter every 3 months. We post it out to our members, which exceed 200, and distribute the rest around the hospital. In it there are very informative articles, written by leading consultants, plus many other tit bits of information to help all ostomists. We have a very large data base of information which can be either posted or sent via email.
If you wish to find out more about us then you can contact me
My name is Robert Azevedo-Gilbert, most people call me Bob and I’m the chair.
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