How
to Improve Healthcare in Your Area.
Patient and Public Involvement
in Healthcare
I find that patients are, on the whole, only too happy to
discuss their experiences of using the health service. In fact often it is hard
to stop them talking and I cannot take notes fast enough!
Yet they find it hard, as individuals, to get their
opinions listened to by Hospitals, PCTs and Social Care providers and
commissioners.
Perhaps part of the problem is the bureaucracy and
apparent inflexibility of these organisations. They like to do things in formal
ways, by holding consultations and engagement meetings. Most patients prefer a
face to face, informal conversation.
Patients also want quick feedback.
Then there is the language!
Public and Patient Involvement (PPI) has its own jargon,
like many of things that happen in the NHS.
There is ‘engagement’, ‘consultation’ and ‘involvement’. They seem to
mean different things to different people. In fact to most patients they mean
little. They are words that managers use and are found in all the strategy documents
and reports published by hospitals and the government.
Patients just want someone to listen to them and then to
take some action so that services are provided or improved. One of the things
that patients feel is important is to have some feedback from the organisation
about how it is using the information it receives from patients.
This is what the government has said (see bullet point 6)
about giving patients a louder voice through the Health and Social Care Act
2012:http://www.dh.gov.uk/health/files/2012/06/B3.-Factsheet-Greater-voice-for-patients-300512.pdf
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Involving
Individual Patients
Patients, at an individual level, have always been
involved in managing their own health.
This took place, either through self-management of their illness or
during the consultation with a health professional. Between them the patient
and doctor or nurse will work out what is best for the patient.
There are times, however, when the patient would still
say “What do you think, Doc?” But in
every consultation there should be some form of joint decision making about
what should be done to improve the patient’s health and wellbeing.
There are other ways that patients, as individuals, can
influence how healthcare services are delivered.
Choice.
We all, as patients, have the right to choose where we
receive our hospital treatment. The hard part is finding out which hospital
provides the best treatment for our condition and for us as a person. But by
making a choice we are influencing those who make the bigger decisions for all
patients. So ask your GP about the quality of the service you need.
Patient
Advice and Liaison Service (PALS).
If a patient or carer has concerns about something then
one way of letting the organisation know is through the PALs officer. This service has been around for a while now
and the PALs officers are there to provide information about services but also
to sort out minor concerns and problems that patient’s experience.
The PALs officer is able to pass on the concerns to
senior management who should sort it out or provide explanations.
Regular reports are made to the hospital board on the
number and types of issues that come to the PALs department. The idea is that this provides information on
services that may need to be improved in some way.
Writing
to MP and local press.
This is always a good way of getting the attention of the
Chief Executive.
Ask
questions at Hospital Board meetings.
This is not easy for some people and I suggest that you
write down your question and ask the chairman to read it out.
Ask
questions at your local Council Overview and Scrutiny Committee.
Again some people might find it easier to ask the
chairman to read out your question.
Complaints.
People are often hesitant in making formal complaints.
They are concerned that if they cause a fuss something might be written in
their notes about being a ‘trouble maker’.
However every complaint has to be investigated and a
report is seen by the Chief Executive. A sub-committee of the board will also
see the investigation and should make sure that actions are put in place to
ensure that no harm comes to future patients. Regular reports are made to the
board in public on the causes of complaints and the actions taken to stop
similar things happening again.
Sadly, sometimes the only way to make sure that services
are improved is by making complaints.
The NHS needs to make it easier for people to make
complaints. There are organisations, such as ICAS (see below) that support patients, their carers and relatives,
in making formal complaints about the care they have received.
The Independent Complaints Advocacy Service (ICAS). ICAS provides advocacy support to people who wish to make
a complaint about the service - or lack of it - that they have received from
the NHS.
Finally patients and
carers can also influence the way their healthcare is provided by joining one
of the many groups that exist in the community and becoming part of a network. Networks of people tend to have a louder
voice than an individual.
There are lots of
organisations and groups in the community that can help patients and members of
the public to influence the authorities. The hard part is to find them and then
to find the time to be active. Often
local councils will have lists of such organisations.
Join your local GP surgery Patient Participation Group.
If you have a long term
medical condition you could join the local user group (or set one up). These
groups are often used by the authorities to provide ideas for improvements in
specific services such as stroke, diabetes, mental health, disabilities and
other conditions.
There are local &
national charities and other voluntary sector groups who support patients and
carers and who can start campaigns to improve care services.
Foundation hospitals will have members who elect a board
of Governors who can influence the executive board of the hospital.
Hospitals and PCT (and hopefully the new Clinical
commissioning Groups) have patient experience groups or forums.
Online groups.
There are plenty of online groups that can both provide support for people with long term conditions and others like Patients Opinion (https://www.patientopinion.org.uk/ ) who provide a way of raising your concersn in a user friendly way. Hospitals do respond to these online comments so hopefully they also act on them.
There is the Local
Involvement Network (LINk), an independent local volunteer led responsible
for collecting the views of the patient and passing them onto the
authorities. They also have the right to
inspect NHS and social care funded organisations providing care. The LINk will
evolve into Local Healthwatch in
April 2013.
Local
Healthwatch will have a greater involvement in this sort
of activity and will be recruiting members to undertake some of the work. Look
out for information in your area.
Other voluntary sector organisations take an interest in
health and social care issues. The Women’s
Institute in Buckinghamshire recently ran a campaign to improve stroke
services. http://www.bucksfwi.org.uk/index.php/wi-campaigns/bucks-activities.html
Influencing
the Clinical Commissioning Groups
The government
has placed great importance on the need for the new Clinical Commissioning
Groups (CCGs) to undertake “Meaningful
engagement with patients, carers and their communities.” as part of their
authorisation process. They are also
required to “…to involve the public on any changes that affect
patient services.”
This means that they should be asking all people about
their experiences of the health care they have received and also asking how
they can be improved. Ideally patients and the public should also be involved
in designing the changes to services as in this example:
http://www.improvement.nhs.uk/audiology/presentations/national_audiology_conference_july2010/Workshop2_presentation.pdf
It will be
interesting to see how CCGs engage and involve individual patients in decisions
about patient services. In an ideal world GPs will have time in a consultation
to discuss with patients and carers the issues and priorities that face the
CCG. Then they should have time to
collect together all the comments made during the working day and pass those
onto the CCG. The CCG then will look at all the comments from all the GPs,
analyse them to help their decision making.
In my
experience I fear that scenario is unlikely!
So ask your GP and your local Clinical Commissioning
Group how they will involve the patients and the public in any changes that
affect patient services.