Winds of Change
The winds of change seem to blowing through a number of health and
other charities. This freshening breeze is moving them away from ‘doing things
for and to’ people towards greater partnership ‘with’ patients, carers and the
public. This creates a climate that is more centred on the lived experience and
knowledge of people affected by a disease, condition or illness.
This approach is welcome news for many of us who want to have more
of a say and see real change from the charities we support and the way we lead
our lives.
A recent article
in the Guardian by @bensummerskill highlighted a number of the reasons that may lie behind
these changes but for some charities it is simply seen as the right direction
of travel. Charities that have a strong partnership ethos should be commended
as I noted in a previous blog
about Diabetes UK.
Bec and Derek (Bec
Hanley and I) had the pleasure of working at Parkinson’s UK in London with their
User Involvement team at the end of July this year. It was really interesting
to meet the group, find out what they are doing and learn from their
experiences which are innovative, inclusive and imaginative.
Parkinson’s UK
published an edition of their research magazine in 2014 that was actually guest
edited by the partner of a person with the condition.
The title PROGRESS
even makes it sound interesting and something I want to read. Its content is as
much about all the people who make research happen (from patients to
researchers), donations (from fund raising to brains) and the research (from
practical living to stem cells).
Likewise, their quarterly member magazine, The Parkinson, has an
editorial board which includes people affected by the condition and they have
also started guest editing, having a chosen user guest edit the Summer issue.
This is joined-up thinking as are all of their information
resources, which are systematically tested by users before publication.
User Involvement Advisors
The User Involvement Advisors we met, a small and well-formed
team, are actively involved in a wide range of activities with volunteers,
fundraisers, staff, patient groups and communities. (The list written up on a
flip-chart appeared endless so it will be good to se it typed up and
circulated.) They are well supported in their work by Luis Perpetuo, User
Involvement Manager.
Three of the team of four User Involvement Advisors are affected
by Parkinson’s themselves, and show a commitment and compassion that is almost
beyond measure. It was good to see that people whose voices are seldom heard
have a presence and are central to user involvement at the charity. I was pleased to see too that handling
compliments and complaints are part of the team’s remit.
This commitment and compassion is equally true of people with
other conditions yet what struck me most was the strength of feeling about the
genuine nature of the relationship between the team and the organisation. There
was an authenticity in the discussion that made it evident that there was real
impact.
The User Involvement
Advisors spread the word about Parkinson's, talking to local patient groups and
to the charity's fundraisers. They promote involvement with the charity to
their peers, which has a different impact compared to other members of staff
doing the same.
You can shop here
On the more unexpected level they have also developed significant
photographic modeling skills of a tasteful nature as demonstrated in the
magazines.
Thank you and keep up the great work!
THE QUESTIONS TO ASK OF ALL CHARITIES
What questions might this raise for the public who are engaging
with other charities?
· How is research forming an accepted and everyday part of
a patient's journey?
· How are you raising awareness about the need and value
of research?
· What are you doing to let me know about research studies
that I can join?
· Do you have a patient/carer reader's panel for the
articles that are published in your organisation and on your website?
· How are the views of patients and the public informing
and shaping the work of the charity?
· How are people with direct personal experience actively
involved in the policy making and practice of your organisation?
· Do you employ staff affected by the condition who may
add to the effectiveness and understanding?
· Do you have a patient as a guest editor for any of your
publications?
If you are doing some or any of these I would really like to hear
from you...
First response from Jon Spiers from AutisticaUK - A great website with good information about research http://autistica.org.uk
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