Monday 10th September 2012
Lisa Dichmont, Macmillan Upper GI Nurse, reflects on setting up an oesophageal support group.
I have just returned from the first patient-led oesophageal support group to be set up in Lincolnshire for 10 years. Looking back it has been quite an interesting journey to get to this point.
In December 2009, new in post, I was wondering how to best look after my patients. I attended a Macmillan Learn and Share Workshop where a physiotherapist talked about a course they had started for people with lung cancer who had just completed their treatment. It aimed to help smooth the transition back to normal life. It sounded like a terrific idea and one that I could adapt to help my patients in Lincolnshire.
I suggested this to the Cancer Lead Nurse and my Macmillan Development Manager. They arranged a meeting with Ruth Wilson, Macmillan Involvement Coordinator. This resulted in an invitation to the upper GI patients in our trust to attend an information day.
On the day
The event took place last September and 66 people attended. Ruth coordinated the day and I circulated and chatted to people along with 10 helpers.
The leader from the North Lincolnshire Support Group, Macmillan information officers, nurses, members of the Patients and Carers forum, a physiotherapist, a dietitian, benefits advisers and the Lincolnshire Council Carers Group all came to share their expertise and experience.
Judging by the noise in the room it was as if everyone had known each other for a lifetime, even though many had just met. Before the event I was concerned with filling the programme with informative talks, but I realised that there was real value in just sharing with other people in a similar situation.
At the end of the day I asked people what support they wanted in the future. They were enthusiastic about information days and support groups, as well as a course at the end of treatment. I then asked for volunteers to form a steering group. My heart sank as the room went quiet; I hoped that the silence was on account of the heat and because everyone was tired.
After the meeting one lady came up to me rather hesitantly and said that she and her husband would consider it. Despite an excellent day, I went home thinking it would probably not result in any of the developments I had hoped for.
Gradually people contacted me and we formed a core group of 12 people and started planning a support group. Lincolnshire is a large county and we wanted to start two separate but linked groups – one in Grantham and the other in Boston. One concern voiced by several people was about dealing with potential loss within the group. To help us manage problems and prepare us to form a sustainable group, I applied to Macmillan for a trainer to run a course for us on setting up support groups.
Sabire Dmagoz spent two very helpful days with us. Some sessions were quite emotional as people relived phases of their disease and voiced their fears, but by the end we had formed a cohesive group where everyone felt free to contribute and share.
The first Grantham group was held in February. The turnout was excellent and people mingled, chatted and made plans for future meetings. The Boston group met for the first time in mid-June.
There is little doubt in my mind that people with common problems can offer each other invaluable support. I am very hopeful that these groups will be a helpful resource for people in Lincolnshire.
Good practice in running your group can be found at Learn Zone
Email Lisa Dichmont, Macmillan Upper GI Nurse at Pilgrim Hospital, Boston.