Expert patients usher in a new era of opportunity for the NHS
BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7402.1279 (Published 12 June 2003) Cite this as: BMJ 2003;326:1279All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
The Expert Patients Programme is praised by Dr Donaldson. Is the new
step forward the fact that the (chronically sick) lay tutors are unpaid?
Does this indicate the value of the programme or the worth of the tutors?
Chronically sick patients are not seen as glamorous,and do not
attract extensive funding. But valuable workers (however sick) deserve to
be remunerated. Of what use is the programme if it demonstrates that the
participants' subsequent work is worth nothing?
Competing interests:
None declared
Competing interests: No competing interests
Dear Mr Donaldson,
British doctors must find it very difficult to work in partnership
with their patients whilst their treatments are dictated by statistical
evidence presented to official sources by producers. Many doctors wouldn’t
have the courage or support of their profession to offer patients an
empowering choice of services or medications in the face of this evidence.
I take synthetic thyroxin and I’ve know for a number of years that
there is an alternative which some people find to be an equally good
medicine, if not better. I also know that synthetic thyroxin was
introduced without the supporting research it should have been, which
makes a lack of choice infuriating under the circumstances. I have been
unwell for some time and at no time have I been allowed to adjust my
medication without feeling that I have had to fight for this choice. I
have had the quantities of my medication decided by a statistical norm
instead of my own personal need, and I have never been offered the
alternative medication to try.
Restricting my right to information, choice and to be involved has
been mentally draining all the way. I have also suffered long periods of
time without enough medication, resulting in a detrimental effect to my
well-being. The financial cost to the NHS of disempowering people must be
phenomenal and worth considering a change of thinking toward using patient
acquired knowledge, especially in chronic illnesses.
If you ask doctors to act in a partnership, then they have to be
respected by their patients otherwise it won't work. A doctor without
respect has no power; therefore they have to resort to using the power
they have been given from official sources, as is the case with so many
medical professionals now. It is sad for patients if a doctor's only aid
to healing is their prescription pad, time and officialdom.
The first step to mutual respect is to ensure that doctors are
comfortable using all the tools available to them 'within reasonable
financial constraints', including the range of old and new medicines.
Organisations like the Department of Health, the Medicines Control Agency
(now the Medicines and Healthcare Products Regulatory Agency) and the GMC
have got to take the responsibility for stifling this freedom in the past.
A GP's reluctance to try the older form of thyroxin, let alone always
informing patents of its existence, for fear of disapproval from governing
bodies, is a classic example of this stifling influence. They must be
reassured that they can use these 'out of the norm' resources with the
same freedoms they use new drugs, that they can treat patients as
individuals. Someone official should say that it is OK to think beyond a
statistical chart and not just talk about the theoretics of doing so.
It should also be considered that whilst there is a wealth of
empowering information on the Internet, there is a danger in assuming that
a reciprocal relationship will work from the onset. There are times when
health care professionals need to know when to take charge, recognise when
someone is too poorly to involve themselves, and when they are getting
better. It's at these times doctors should encourage their patients to
keep notes/records, save information, direct them toward patient support
groups and to use an advocate who knows their nature and how they feel
about things.
Expert patients should have great teachers and helpers, these should
be their doctors who can lead them through the wealth of information and
who can share in their care. They should never become an expert patient
through the kinds of experiences I've had, this only fosters anger,
resentment or sadness over lost lives.
Competing interests:
None declared
Competing interests: No competing interests
Research on the Expert Patient concept
The concept of the Expert Patient does indeed usher in a new era of
opportunity for us as health care professionals. I have just spent the
past year doing research on this concept, inspired by the document: "The
Expert Patient: A new approach to chronic disease self-manaegment for the
21st Century." I wanted to explore what it takes to become an Expert
Patient, and what we can learn from patients who would be considered ones.
My study was based in phenomenology. In the absence of an NHS
definition of an Expert Patient, I developed the following: An Expert
Patient is a person who has been empowered with the skills, confidence and
knowledge needed to play an active role in making informed decisions about
their own health care and management of their chronic condition. My
participants were individuals in my practice that I considered to be
exemplars of this definition. They told me that the wanted to be
considered capable and responsible decision-makers regarding their
condition. They developed an expertise on their own chronic condition by
living with it, obtaining knowledge from a wide variety of sources, and
from the support they received and got from significant others in their
lives. They recognized that they didn't always have expertise in the
clinical aspect of their condition, but they did have expertise in their
own condition. This is a rich resource for us to use.
I determined that the essence of the phenomenon of patient expertise
was trust. We need to trust that some of our patients will want to become
Expert Patients, and trust and respect their experiences of living with
it. They need to trust their knowledge and skills, us, and yet also earn
our trust in demonstrating their abilities to be capable and responsible
decision-makers.
The era of opportunity described in Donaldson's article is the
opportunity patients have to obtain what they need to develop expertise in
their own condition, and the opportunity we have, as health care
professionals, to practice in such a way that we work as co-experts with
our patients.
Competing interests:
None declared
Competing interests: No competing interests