How concordance and patient empowerment challenge pharmacy
Carol Watson says that changes in professional practice are essential if treatments and services are to be patient-centred
Carol Watson is chief executive of Bristol and South Glos Carers
Centre
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The National Health Service is changing: patient involvement has become
far more a part of everyday life. The message about what patients and
their carers want is clear. They want to be respected and fully involved
in discussing, agreeing and providing their treatment and care plan.
They also want professionals, agencies and specialists to work together.
Involving patients and their carers has to happen at all levels — it
is no good having patients on boards or involved in staff recruitment
if, at an individual level, they do not feel consulted and fully involved
in their own treatment. It is important to recognise and support family
carers not only as a principle but also because families provide the
bulk of health and social care. If we do not support and engage with
them, we have not only lost an opportunity but also may find treatment
and care plans inadvertently undermined. Most importantly, patients want
the best treatment possible — but “best” on their terms,
taking into account personal preferences on issues like pain and the
way they live their lives. The challenge is for professionals to fit
the patient, to make the service patient-shaped, remembering that patients
are not all the same shape.
Challenges
From the patient’s perspective there are some challenges for pharmacy.
Patient organisations still report that too few patients receive information
about their medicines that they can understand and use, in particular
about possible side effects.
A hospital discharge project that I have been involved in identifies
a mixed picture. On the one hand, there is a more patient-centred approach,
where pharmacists work on the ward and provide a longer-term prescription
so there is no delay to discharge. On the other there are examples of
people waiting several hours for prescriptions before they can go home.
We must not underestimate the impact on patients of those waits. Discharge
is not just leaving the ward — it is going home. For many patients
and their carers it is going home to a changed situation, involving anxiety
and confusion for both parties. Minimising the additional anxiety caused
by delay maximises the health outcomes. A patient-shaped service recognises
that what to the professional is a number of points on a treatment pathway
with a clear distinction between community and hospital, to patients
is just one blurred aspect of a much bigger picture — their lives.
In the patient and carer movement we talk about empowerment: our jargon
for patients and carers feeling in control of the situation by asking
questions and using information. It is not about a stereotype of the
unjustifiably angry and difficult patient — generally such people
are those who have been disempowered. It is about patients feeling their
perspective is listened to and understood — these patients are
better able to take a full role in their own recovery.
Researching for a recent presentation led me to discover that “empowerment” has
its counterpart in pharmacy practice — concordance. This concept
fits into the modernisation agenda well. It places the patient, not the
professional, at the centre. It emphasises a holistic approach because
medicine-taking is as important, if not
more so, than medicine-prescribing. This approach is only possible within
a patient-shaped service that listens to, engages with, and tries to
understand patients and the factors affecting their desire and ability
to understand and follow a regimen. This flow of information from patient
and carer to professional is more likely to lead to a flow of adequate
and appropriate information and advice from professional to carer.
Concordance emphasises that in order for medicine-taking to be successful
the professional must understand the patient’s experience and attitude
to the disease and treatment; the patient must know how and why prescribed
medicines should be used, and “know” in a long-term, thorough
way, not just to have barely understood a string of words only to forget
them. It may be important to set aside preconceptions of “common
sense”, because no sense is truly common to everyone involved.
Professionals may find it difficult to comprehend why patients cannot
understand the difference between their prescription before inpatient
treatment and after, because it is “common sense”. But then
patients would say a system lacks common sense, too, if records held
by general practitioners are not automatically and adequately updated
for changes of prescriptions during a hospital stay. It also appears “common
sense” to ensure people leave hospital with 14 days’ worth
of medicines — how can a recuperating patient with only a hard-pressed
family carer visit a pharmacy shortly after discharge?
Changes in professional practice and demarcations are essential if the
treatment and service is to suit the patient rather than the patient
suit the treatment and service. An important step towards patient-shaped
services is, of course, allowing patients to help shape the service.
Patients’ and carers’ voices need to be included in planning
groups — innovation is not always in itself a good thing, and we
need to keep the patient at centre-stage. However, examples I have come
across of ward-based pharmacy, of self-administering schemes and of patients
using their own drugs, are all examples of improvement from the patient’s
perspective.
Not all patients have access to the same service in the first place.
Modernisation has to be about recognising and overcoming inequality issues,
including patients whose first language is not English and whose experience
of health care is still one of disadvantage. This means working carefully
with representative groups to find ways of understanding and overcoming
problems. Information is not only passed from health care professional
to patient; it is also passed within and through communities and we need
to work creatively with that.
New ways of thinking
Patient and carer involvement can lead to new ways of thinking. A year
ago I was involved in a conference for older people and their carers
about the National Service Framework for Older People. Carers were
clear that they wanted to be seen as partners in care and believed,
in particular, that they had a clear contribution to medicines management
and falls avoidance. This idea was taken by carers into planning groups
and led to Bristol South and West Primary Care Trust working with carers
to develop a leaflet aimed at them, from their viewpoint. I know from
comments at carers groups that this has impacted on the ability of
carers and patients to understand and use their medicines. It sends
a clear signal that carers and patients are valued.
There are many other such examples. However, sometimes involvement does
not work well, because professionals do not understand how to make meetings
user- friendly, or how to work with community organisations to support
and involve people. A sole patient representative who has no outside
support may find it difficult to push for change through a formal committee
structure. Patient involvement has it own expertise, but modernisation
means that good practice is increasingly being recognised and developed,
through Patient Advice and Liaison Service schemes, through PCTs and
through partnership with patient and carer organisations.
In conclusion, from a patient perspective, modernisation is changing
things and leading to better health outcomes. Many of the structural
changes are in place but for the individual patient the proof will come
with an improved experiebce. It comes down to imagination, seeing the
world from the patient’s viewpoint and communication. It means
really listening to patients.
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