Forming a support group for patients
with MPGN/DDD/C3G
Ian Mackersie and Emma Woodward
aHUSUK
22June 2013
1 What do you want a support group to
do?
 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
condition
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
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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
campaigns
• 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
media
8 Think about funding
• Collections, grants, donations, legacies, merchandise,
sponsorship, events and grant aid are all potential sources of
income
• 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?