Forming a Support Group

Forming a support group for patients
Ian Mackersie and Emma Woodward
22June 2013
1 What do you want a support group to
 Support patients and families – how?
 Spread the word – where?
 Increase awareness of disease – among whom?
 Raise funds –how?
 Campaign – about what?
2 Have clear objectives
Objectives must be
• realistic and achievable
• for charitable purposes
Strategic objectives might be
• support people with MPGN
• support their families and carers
• educate public and clinicians about the
Will also need operational objectives
3 Possible structure
Unincorporated Charitable Association
• Must have charitable aims
• Must be exclusively for public benefit
• Unincorporated - unlimited personal liability of trustees
• Subject to civil law and Charities Acts
• If annual income over £5000 - must register with Charity Commission
for England & Wales (CCEW)
• Regulated by CCEW
• Use CCEW model constitution
• Possible to incroporte as Charitable Incorporated Organisation (CIO)
4 Elect trustees and management
• Charity run by board of trustees elected annually
• Minimum 3 officers – Chair, Secretary, and Treasurer
• Experience of voluntary sector, public sector (esp healthcare) or
business useful
Suggest no more than 10 trustees
Even and fair distribution of work among trustees
Defined responsibilities and accountabilities
Setup will require much additional work
Think of a good name
5 Attract and involve members
• Members are lifeblood and future trustees
• Adopt simple and wide criteria
• Recruit as many as you can
• Create inclusive atmosphere
• Respect any who do not want to be active
• Members bring good ideas and are essential to
• Combine AGM with conference, speakers and
expert panel
6 Networking
• People often prepared to help charities
• Use contacts but watch for nepotism, favouritism and
possible conflicts of interest
• Develop friendly links with clinicians, politicians,
journalists and other media folk, NHS management,
pharmaceutical companies and rare disease groups Be
aware they all have a different agenda but be aware that
they may have a different agenda
• Join associations and get invited to things
7 Use electronic media
• Website essential - can be as sophisticated or as plain as you like
to start
• Control of material going out in your name on website and social
media essential
• Remember not all members have access to internet or social
8 Think about funding
• Collections, grants, donations, legacies, merchandise,
sponsorship, events and grant aid are all potential sources of
• Raising significant money by these means is hard
• Many support groups take unconditional grants from
pharmaceutical companies
• Concentrate on funding own costs and expenses, leave expensive
research funding to others
9 Behave with integrity and honesty
• Protect and promote your reputation
• Ensure decisions made ethically and independently
• Be open and accountable
• Identify and manage conflicts of interest
• Do not take a party political line
• Act in best interest of patients at all times
• Consider wider effect of actions
Thank you and good luck…
why not start today?