What you need to know about my condition
Guidance notes
Adapting the leaflet
This leaflet has been developed by the members of the Neurological Alliance, so
that people with a neurological condition can share important information about
how their condition affects them with those offering them care. The leaflet has
already been tested informally and proved useful.
The Alliance is making the template available for adaptation by individuals, by
support groups or by national organisations representing a particular condition or
interest group.
We have tried to keep the information included as generic as possible, but you
may wish to adapt it for a specific condition, or for a specific area or setting.
Feel free to make any change that makes this leaflet more useful to you and
your members. We would be glad if you would leave our logo in the left hand
corner of page one and we would be delighted to receive examples of how you
have adapted the leaflet.
The following notes are designed to help you with that adaptation.
1. This leaflet can be adapted by anyone for use in any setting. It could be
used in hospitals wards, respite care, A&E and in the community. People
may wish to carry the leaflet when they go on holiday or in case of an
accident.
2. Try not to include too much information: readers are unlikely to spend
many minutes looking at the leaflet and you need them to focus on the
key messages. The leaflet should encourage professionals to talk to the
leaflet’s owner, rather than seeking all the information they need in the
leaflet.
3. Keep the text of a legible size. You may wish to consult the RNIB clear
print guidelines.
4. Provide some basic information about the condition you are targeting and
consider including a website link or helpline number so readers can find
more information.
5. Before you print a final version, invite a group of members to test the
leaflet and propose improvements.
6. You may want to include an insert or tear-off sheet, giving guidance notes
for people filling in the leaflet. (See Using the Leaflet below, for some
examples of what those notes might include).
7. You may wish to consult the Brain & Spine Foundation - Information
Access Toolkit, which is designed to help commissioners and providers
of health and social care services to meet the information needs of
people with long-term neurological conditions. One part of the toolkit
provides guidance to health and social care professionals on best
practice in communication and providing information.
Using the leaflet
The Guidance Notes you supply for users could include:
1. Eating and drinking (page 2): Remember to include information about
allergies, intolerances and any personal preferences.
2. When you have completed the leaflet, you may wish to talk through its
contents with any professionals involved in your care.
3. You could ask for a copy of this leaflet to be stored with any notes held
by a GP, social worker, or other professional.
Distributing the leaflet
1. Consider making the leaflet available electronically as well as in paper
format: people may wish to tailor it for their own use and you could make
it available through your website or e-mail mailing list.
2. Use whatever paper format you like. We have seen an excellent similar
document produced by the Motor Neurone Disease Association called
Understanding my Needs which is a 4xA4 folded leaflet.
What you need to know about my condition
Although I am in hospital for [… insert … ], I also have [… insert condition …],
the symptoms of which vary from person to person and are different from one time
to another. To help me cope while I am in your care, you need to know the
following information.
Full Name …………………………………………………………………………….
The name I like to be called by …………………………………………………
Address
…………………………………………………………………………….
…………………………………………………………………………….
Telephone …………………………………………………………………………….
In an emergency/for more information contact ….……………………….
Telephone …………………………………………………………………………….
GP name
…………………………………………………………………………….
Surgery telephone
………….……………………………………………….…….
Specialist nurse/neurologist
……………………………………………………
Telephone …………………………………………………………………………….
Essential information
E.g. symptoms which may arise which require urgent attention and what to do in these
circumstances, religious/cultural needs, existence of an advance directive
Eating and drinking
Please remember that my condition varies over time ask me what my needs are now
Eating and drinking
I eat and drink independently
yes
no
I need the following help when eating or drinking
………………………………………………………………………………………………………………….
I have the following dietary needs / food allergies
………………………………………………………………………………………………………………….
Communication
My condition does
does not
affect my intellect
I have no
some
considerable
difficulty in hearing
I have no
some
considerable
difficulty in understanding
I have no
some
considerable
difficulty communicating
I have no
some
considerable
difficulty recalling information
How you can help when talking to me or when I am trying to tell you something
………………………………………………………………………………………………………………..
Mobility
My mobility is
is not
affected by my condition
I experience muscle weakness
which affects my:
muscle stiffness
tremor
Upper limbs
sometimes
often
constantly
Lower limbs
sometimes
often
constantly
Torso
sometimes
often
constantly
Head / neck
sometimes
often
constantly
Hands / feet
sometimes
often
constantly
I can walk
unaided
with assistance
I can stand
unaided
with assistance
I need to use the following mobility aids (i.e. walking stick, frame, wheelchair)
………………………………………………………………………………………………………………….
I need help getting in and out of bed
yes
no
I need help getting in and out of chairs
yes
no
I need help getting to and from the bathroom
yes
no
Personal care
I can take care of all
some
none
of my personal needs
I need help to take a bath / shower
yes
no
I need help to wash / shave / clean my teeth
yes
no
I need help to use the toilet
yes
no
I need help to dress or undress
yes
no
I have the following special needs with personal care
………………………………………………………………………………………………………………….
Medication
I would like to self medicate if possible
My medication
yes
Dosage
no
Frequency
…………………………………..…… …………………… …………………….
…………………………………..…… …………………… …………………….
…………………………………..…… …………………… …………………….
…………………………………..…… …………………… …………………….
……………………………………… …………………… ……………………….
I know that I am allergic to or cannot take the following medicines
………………………………………………………………………………………………
Essential equipment that I need during my stay
……………………………………………………………………………………………
……………………………………………………………………………………………
Before I am discharged you need to plan
…………………………………………………………………………………………………
…………………………………………………………………………………………………
…………………………………………………………………………………………………
Other useful contacts (i.e. social worker, voluntary organisation)
Name
Role
Telephone
……………………………………….
……………………………………….
……………………………………….
…………………………..
…………………………..
…………………………..
………………….
………………….
………………….
More about [condition]
Use this box as you wish, for example, to give some general information about
the condition to help those who might not be familiar with it, or to highlight a
particularly important piece of information about the needs of people who live
with the condition, or about your organisation.
Thank you for helping to make my stay as
comfortable as possible
Signed
Patient (and specialist nurse if desired)
Dated
This leaflet was developed by the Neurological Alliance with the help of its member charities. Particular
thanks are due to the Motor Neurone Disease Association, the Sarah Matheson Trust, the Tuberous
Sclerosis Association and the Walton Centre.
Neurological Alliance, Stroke House, 240 City Road, London EC1V 2PR
Website: www.neural.org.uk Email: admin@neural.org.uk Tel: 020 75661540
Registered charity 1039034