Joining a SIGN guideline development group – a patient's perspective
Lay representative on management of urinary incontinence in primary care guideline – published December 2004
I have suffered from bladder incontinence for most of my life but have only been receiving treatment for the past nine years. I became involved with SIGN through my involvement with the Incontact support group. SIGN had written to this organisation seeking lay people to join the guideline development group. I had never heard of SIGN before and when the manager first suggested I become involved I felt slightly apprehensive, particularly since I would be working alongside healthcare professionals. My first thoughts were that I would feel inferior and would not be valued as I did not have medical knowledge and expertise. As my condition has a stigma attached to it this was obviously a major concern for me. I did however think this would be an adventure and an opportunity to have my voice heard as a sufferer of this condition.
From the first meeting I attended through to the launch of the guideline I was treated with respect by healthcare professionals and treated as an equal. I built up a good relationship with the guideline development group members and felt I could ask questions freely if I had not understood something.
As a lay representative I was involved in developing the Information for discussion with patients section of the guideline. This included sourcing patient support organisations, developing questions people with the condition may ask their GP, and listing symptoms of the condition. I did this by collecting information from Incontact leaflets and through my own experiences as a sufferer of the condition. SIGN patient involvement staff were available at all times to provide support to the lay representatives working on the development of this section. I really enjoyed developing this section as it was straight from the heart, it was not from research articles but was from my own experiences and views – I had now become the expert.
The National Open Meeting took place in November 2003 and I was asked to give a talk about how bladder incontinence has affected my life. It was not essential that I had to do this but I was delighted I had been asked. I really enjoyed doing this and thought this was an excellent opportunity to actually make health professionals listen and act on what they had heard to improve services for sufferers of the condition.
I attended the relevant patient training days run by SIGN which I found very informative. These days were completely informal and I felt able to ask questions whenever necessary. As I had missed the first meeting of the guideline development group, I found the training very worthwhile as I was informed of what SIGN does and what my role as a patient representative was. SIGN also had informal lunches for lay representatives on groups which were an excellent opportunity to meet other lay representatives. I met many new people and we were able to exchange experiences of being on guideline development groups. It was also a good opportunity to get to know SIGN staff.
If I was asked again to become involved with SIGN as a lay representative I would be more than happy to do this. My advice to anyone thinking of joining a guideline development group is that you must realise the huge commitment. Do not be afraid of working with healthcare professionals. I was working with healthcare professionals to improve my own treatment and I wanted to help others who have had similar experiences. It is a chance to have your voice heard and by informing healthcare professionals of your views and experiences help make a difference to health service provision in Scotland.