Thank you to all of you who responded to my request for information on
sources of info. for patient and self-help groups. As it seems to be of
interest to several people, the list of responses is below.
All of the suggestions are listed below in no particular order; most are web
sites, with a few paper directories. CAF, NHS Direct and Patient UK were
suggested most frequently. I haven't investigated how current or
comprehensive they are or how often they are updated and I haven't included
web sites that listed 'good sites for patient information', just the
directories/lists themselves.
thanks again
Ruth
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ruth Frankish
Information Specialist, Appraisals
National Institute for Clinical Excellence
11 Strand
London
WC2N 5HR
tel: 020 7766 9184
fax: 020 7766 9123
e-mail: [log in to unmask]
CAF is good for patient support for parents of children with
disabilities/rare illnesses. <http://www.cafamily.org.uk> and the Telephone
Helplines Association <http://www.helplines.org.uk>
The CAF directory (recently changed its format) but one of the best rare
childhood diseases directories think most of the best adult ones are all on
line I'm afraid. Available on paper form as well, but I don't know how
often it gets updated.
I think the best directory is still helpbox from the Help for Health Trust -
it's not linked into nhsdirect online. For what it's worth, we use Helpbox
but it's getting out of date, as are most of our printed lists, so this is
timely.
We used to use a database for self-help groups etc called "Help-Direct"
which "is a comprehensive, searchable database of self-help and support
groups and organisations, covering the whole of the country, available to
the public on the internet."
http://www.hfht.org/databases/helpdirect.htm
I found the NHS Direct actually answered my enquiry very well, and so I did
not search any further. <http://www.nhsdirect.nhs.uk/> The service covers
quite a small range of conditions so far but it is particularly useful if
you want to know more about cancer or leukaemia.
Here are three which I use
1) patient support information -
<http://www.ion.ucl.ac.uk/library/patient/patient-support.html>
2) PST = Patient Support Trust - <http://www.patientsupport.org.uk>
3) Patient UK - <http://www.patient.co.uk>
A neurological disorders list can be found at:
<http://www.ion.ucl.ac.uk/library/patient/patient-support.html>
We use The Health Address book: a directory of health support groups
3rd ed, Royal Society of Medicine published in association with the Patients
Association Paperback £17.50 ISBN 1-85315-455-5 Published 29 Sep 2000. It
has a nice layout and subject index.
the 'no panic' directory (no more details)
This one (Patient Wise) would be one of my candidates (on what is of course
a constantly changing scene). It is available in paper (at a price) but
bits of it are also on the web at
<http://www.nthames-health.tpmde.ac.uk/hifirst/health_topics/index.htm>
HEBS on CD is worth looking at or their website at
<http://www.hebs.scot.nhs.uk>
One we use a lot and find invaluable is the NCVO's Voluntary agencies
directory,
published annually. The 2001 edition (ISBN 0719915848) is out now and is
around
£25.
<http://omni.ac.uk> usually includes self-help groups.
'Medicine & Health on the Internet' ISBN:184025337, published by Internet
handbooks. It has an entire chapter (4), listing of websites for
patients/support groups .
|