The next step is to identify the demographics of the people you want in your group. The profile you created when planning the activity will help here.
You’re not going to get the perfect group that reflects the social, cultural, and health needs of the population. It’s about acknowledging that people with diabetes, and carers will come from different groups, have different kinds of experiences, and expectations of their local health services…
Adrian Mayers, NHS Hammersmith and Fulham Head of Long Term Conditions
We have a high prevalence of diabetes, in excess of 35,000 so a group of 20 isn’t going to be representative. So if you get a broad base of age range and experience – then that’s OK….it’s more about the types of individuals that will add value to the work you want to do.
Carol Cottingham, NHS Lincolnshire Head of Long Term Conditions
One practical tip is to draw a table with the right number of chairs for your group. Then you can allocate the chairs to a specific type of person until you have the balance that you need. The factors to consider are age, type of diabetes, ethnicity, length of time since diagnosis, where they live or receive care, sex, disability, other illnesses and so on.
When you know who you are looking for, think about who can help you reach them. This will include people inside your organisation and local community groups.
Children and young people
If you are looking at paediatric services, you will need to involve children and young people themselves, and sometimes their parents. A user group may not be the best way of doing this. The ‘Not just a phase’ guide from the Royal College of Paediatrics and Child Health may be helpful:
http://www.rcpch.ac.uk/Policy/Advocacy/Not-Just-a-Phase-Guide
For further information on involving children and young people, visit:
http://www.participationworks.org.uk.
Nina Bilbie (NHS Lincolnshire user group) explains the importance of diversity in user groups: