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Our proposals
Access to information and advice
Why it matters
Better informed patients lead to better clinical
outcomes.The proactive and systematic provision
of accessible information to people with long-term
conditions, and their families and carers, needs
greater recognition and investment by the NHS and
Government. Proper access to information helps people
become informed decision-makers about their care
and enables them to live their lives with their
condition.
People with long-term conditions, and their families
and carers, often lack the information they need
to make informed choices about their care and to
navigate their way around the system.Meeting patients’
complex needs for different types of information
and advice should be as important as treating an
individual’s physical symptoms.
The provision of information is a common theme throughout
the voluntary sector. There is a wealth of information
and advice provided by national organisations and
local groups, but there is not enough of an understanding
of the benefits of access to information amongst
the health community.
New ways of helping patients to navigate the system
are already being pioneered. For example, patient
care advisers have been critical to the success
of the first pilots of patient choice in London.
Key workers in mental health and specialist nurses
in cancer are demonstrating the difference that
can be made if people have a familiar face to whom
they can turn for advice, support and help in accessing
the services they need, when they need them.
Where next
People with long-term conditions need a simple way
of accessing the range of information they need.A
clear information and advice checklist, given to
them by their healthcare professional, that details
where to find out more about their condition and
the services available to them, could be a way of
achieving this.
The information and advice checklist would include:
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how
to access information about your medical condition |
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how
to contact other patients living with the
same condition |
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how
to access other support services, such as
benefits advice |
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how
you can be put in touch with a personaladviser,
if wanted, to help co-ordinate your care. |
The checklist should be personalised and named individuals,
whether health service staff, voluntary groups or
people with a similar condition, should be identified
as sources of support, available on an on-going
basis to act as the first port of call for the individual.
Healthcare professionals need to be able to more
easily access electronic information on services
available throughout the NHS and voluntary and independent
sectors during consultations with patients. Providers
of such information, including the NHS, voluntary
and independent sectors, need to be willing to sign
up to quality standards to ensure a uniformity and
high standard of information and advice is available
to people with long-term conditions.
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Hadleigh
Practice Information Service
An information service was set up in the
Hadleigh Practice around three to four years
ago with some initial funding from Macmillan
Cancer Relief, a local carnival and the
Friends of the Practice. Although it had
its origin in cancer information and support,
the service now covers all areas of health.
It is one of the only services of its kind
based in a GP practice.
A room has been set up as a mini library
for the 17,000 patients registered at the
two-site practice; it is also used by some
of the partners at the practice who pick
up resources to pass on to patients.The
room contains a PC for internet access,
a video recorder, racks of leaflets and
books.There is also a blood pressure monitor
and scales that patients can use themselves.
On diagnosis, patients can be given an
‘information prescription’ from
their GP to inform them about the service
and how it can be accessed.They are encouraged
to drop in at any time and three mornings
a week the service is staffed by volunteers
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who
can guide patients and put them in touch
with local support groups or provide recommended
website addresses.
They act as a listening ear and are careful
not to convey their own view. Bob Wilson,
a volunteer at the Practice, explains: “Patients
appreciate being able to take their time,
with no pressure, and rummage through our
literature, whilst also having the option
to ask for help if they need it.”
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