Some years ago I underwent major surgery for the removal of my inflamed colon. I had suffered from ulcerative colitis for too long and the time had come to make a change. I have now had my ileostomy for seven and a half years and my life is much better than it was before.

As a result of my surgery, I met other people who have a stoma and, because of my experience of working in the health service, I became their local spokesman. About three years ago some of us got involved as “patient representatives” in a new stoma nursing service in East Kent. We have now created a new way for all of us who have a stoma to be at the centre of the development and improvement of the services we receive. This is called the MyStoma project.

MyStoma is run jointly by East Kent Stoma Support Groups and the Stoma Care Service of the East Kent Hospitals Trust, with support from our commercial partners (Dansac, Fittleworth Medical, and Salts Healthcare). The project gives a voice to people who have a stoma and ensures that the care they receive reflects their own needs as expressed by the ostomists themselves. We are developing a new way of engaging with patients, which makes the experience of those who have a stoma the starting point for service improvements.

MyStoma: How does it work
Everything we do in MyStoma is based on the simple premise that only the person with a stoma knows what it is really like to live like this. With this in mind, we began by simply asking ostomists what they wanted from the stoma care service. By talking to people who have a stoma and listening to the stories they have to tell, we created a simple and clear “Ostomist Agenda.”

The agenda lists all the things that we expect the stoma care service to provide for us and is at the centre of MyStoma. It is held by the ostomists and only someone with a stoma can add items to the agenda. The agenda forms the basis for all service development plans for stoma care in East Kent. This means that, for the first time, any changes to the way services are provided are related to the things that people who have a stoma have said they want. The agenda is never finished and, as we talk to more people with a stoma, items are changed or added.

How have services improved?
As a result of MyStoma everyone who is discharged from hospital with a stoma is now phoned every day for the first 10 days after discharge. We have out of hours phone support for everyone with a stoma, so that when we have a problem we do not have to go to the accident and emergency department. Most of us get our stoma prescriptions within four working days instead of having to wait for two weeks, and we have stoma clinics in GP surgeries so that we don’t have to travel to the hospital to see a stoma nurse. Best of all, everyone who has a stoma is reviewed once a year so that the stoma nurses can make sure that we are using the most appropriate stoma products. All of these are new things that we asked for on our agenda.

We are no longer passive, we are active and leading players in deciding what services we receive and, because of this, we are much better able to manage ourselves and be independent.

MyStoma: Why does it work?
MyStoma works because we have taken a person centred approach to the way that stoma care is constructed and delivered. Our experience of living with a stoma is used as the basis for service development—we don’t collect feedback, we provide input. This firsthand lived experience is at all times central to the process. The service cannot be static and it must continually respond to our changing needs and expectations. Put simply, if you want to know what your patients expect from your service, ask them and then get on with it. It is a simple lesson, but one which many parts of the health service should learn if they are to meet the needs of their patients.

Now that we understand why MyStoma works it is becoming clear that if we can have MyStoma, then we could have MyDiabetes, MyArthritis, MyColitis, or MyAnything else. Other care communities could benefit in the ways that we have from gaining a voice and from being heard. We have not just shown how stoma care can be improved; we have shown that listening to what service users expect, as the starting point for service changes, leads to improvements in care that benefit everyone.

Derek Mitchell worked as a manager in the health service for 18 years, mainly in primary care, before retiring due to ill health. Derek read philosophy at Oxford and subsequently at the University of Kent at Canterbury and Kings College, London. Derek is now undertaking research at Manchester Metropolitan University with the support of the European Society for Person Centred Healthcare.

Competing interests: Derek Mitchell receives funding from the European Society for Person Centred Healthcare to undertake research.