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332 PersonalisedCareinlegUlCeration
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Lower limb leadership, like any type of clinical leadership,
means encouraging each other in terms of leadership at all levels.
This moves the practitioner from managing one person well to the
health of the population. Examples may include developing leadership skills in lower limb management, challenging the narrative or
the myths around compression therapy discussed later in this chapter, bringing data together to identify variation in outcomes or
health inequalities and introducing the concept that ‘change begins
with me’. Leadership requires courage because the practitioner will
challenge the power of individuals or the system; it requires the
practitioner to articulate their knowledge and explore the local evidence even when they feel they lack the competence or condence to do so.
A PROBLEMATIC CULTURE WITHIN LEG ULCER
MANAGEMENT
A number of myths exist in the culture of leg ulcer management that
are not helpful and distort a focus on personalised and holistic care
(Wounds UK2022). These have also been the focus in other chapters,
for example the myths that foot compression should be avoided or
that compression during and after deep vein thrombosis is dangerous
are explored and challenged in Chapter8.
Practitioners should be aware of the prevailing culture in which
they work, especially where myths are seen to eect clinical activity.
Mannion and Davies (2018) describe organisational culture as shared
ways of thinking, feeling and behaving, which are driving forces that
can act for change or undermine improvement initiatives (Mannion
and Davies2018). Unhelpful perceptions in the culture of leg ulcer
management can generate a culture of blame for the person with leg
ulcers and can prevent the practitioner from challenging their peers
or indeed challenging themselves in their need to change practice.
Table7.7 describes some of the common prevailing views in leg ulcer
management; these are explored in more detail in Chapter8.
In addition to unhelpful perceptions or myths, system delays in
obtaining the right care at the right time can have signicant
impacts on the trajectory of the person’s wound and their lived
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TABLE7.7 Common views ofleg ulcer management.
Myth Reality
Some people see a
benet to
keeping
their wound
unhealed.
Compression to the
foot must
be avoided.
A little compression
is better
than none.
Strong compression
above a moderate
40
mmHg
is a risk.
When compression
therapy is
painful, it is not
suitable for the
person with leg
ulcers or
compression
dosage must
be reduced.
With the exception of factitious injuries, there is no
evidence of this within lower limb research.
The foot needs to be compressed so that the foot
pump is enhanced and oedema is not forced down
to the foot from compression in the gaiter area.
Compression also supports the foot better and
aids in walking.
Most people with non-
lymphorrhoea need eective strong compression
to heal swiftly. When compression is mild and
therapeutic, this allows deterioration and
nonpoor management of exudate. Pain can thus be
severe where there is mild compression.
Like all therapy, risks need to be assessed and
proactively managed. If moderate compression is
not healing the ulcer or managing exudate, the
actual risk of nonof life is high. Nonneed a noncompression to heal.
Compression needs to be applied well and
comfortably, then it will be tolerated and all the
benets of therapeutic compression will be
received. Why it is painful requires exploration
and to be acted on. The common reason for lack
of tolerance is poor application technique or the
use of a product not suitable to the person’s
lifestyle. The importance and rationale for
compression need to be explained to allay the
person’s fears, increase their knowledge of this
vital therapy and encourage acceptance. Dosage
of compression should only be reduced to gain
trust and then swiftly increased; be aware of the
risk of deterioration with non- therapeutic levels
of compression.
standard approach and strong
ischaemic leg ulcers and
healing and having poor quality
standard limbs (long/wide)
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TABLE7.8
Local systems may not respond swiftly to the eective management of a
skin tear on the lower leg (LeBlanc and Baranoski2014), which presents
the risk of deterioration to an open leg ulcer.
The primary care nurse may not have been trained in the use of
compression despite the national guidance on provision for eective
management, leading to an inexperienced workforce (Broadhead
etal.2018).
Delays in initiating compression therapy such as reduced access to
diagnostics or the ankle brachial pressure index (ABPI) can allow
deterioration and pain to take hold (Hopkins and Samuwiro 2022).
System delays that will have impacts onpatient outcomes.
experience (Table7.8). Practitioners should recognise the challenges
this generates: inadvertently compounding existing health issues,
allowing wound deterioration and unmanaged oedema or preventing opportunities for management and timely healing. Delays and
inadequate system responses will certainly make a standard plan
more dicult to tolerate and thus have signicant impacts on the
person’s health outcomes.
It is useful to review the antiquated idea of the ‘social ulcer’: the
prevailing view that some people with leg ulcers want to ‘keep’ their
ulcers for the social gain this brings. This view can be perpetuated
by giving it an ocial title, the ‘social ulcer’ making the concept feel
legitimate. This term started with an article by Wise with that title
(Wise1986). The author described their perspective on the relationship of social isolation to non-
healing or recurrence, accepting anecdotal stories of ‘the knitting needle syndrome’ where patients create
wounds to keep the nursing visits. Despite the unsubstantiated
claims, the term resonated for many and is still used within the community and by industry, giving credence to this belief, despite lack
of evidence. Phrases like this can take on a life of their own and it is
incumbent on practitioners to bring critique to the underlying
beliefs, as such a catchphrase halts conversations and prevents
deeper discussion with the patient to understand their viewpoint or
how it is for them to experience leg ulceration. Morgan and Moatt
(2008) conclude that such ‘perceptions have resulted in the labelling
of patients, which has negatively inuenced the care and management of this patient group’. Yet people’s lives are disrupted and they
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have to develop a variety of coping mechanisms to manage this
change (Hopkins2004).
CHALLENGING NON- COMPLIANCE
A key topic in the healthcare culture of leg ulcer management that
we need to expose and address is the prevailing view on noncompliance. Similar terms are ‘non- adherence’ or ‘non- concordance’.
Hobden’s examination of the term concordance (Hobden2006) was
that it ‘has evolved from terms such as non- compliance and nonadherence and reects a shift in the culture of health care interventions, aiming to empower patients’. That may be so from a more
academic viewpoint, but the prevailing language used within leg
ulcer management is that of poor compliance and dicult patients.
Whichever term is used, practitioners need to understand the power
dierential in the practitioner–patient relationship. Practitioners do
expect the patient to take on the ‘sick role’ and to take and adhere to
the practitioner’s advice. The conict comes when this does not happen and at this point the patient can be labelled as ‘bad, dicult,
disobedient’ (Morgan and Moatt2008).
When practitioners are asked about what prevents good outcomes, ‘non- compliance with treatment’ is often raised (Hopkins
and Samuriwo2022). Examples are typically provided of all the tactics and products used in order to achieve compliance, alongside a
comment that ‘we have tried everything’. These patients could be
described as ‘unpopular, dicult or “heartsink”, without actually
being aware of such marginalisation themselves or the impact that
such a “label” may have on their subsequent care’ (Green and
Jester2019). See Box7.2 for one person’s experience.
Practitioners may sometimes be quick to accept the hesitancy of
a person with leg ulcers about compression, rather than exploring the
reasons behind it more thoroughly. The assumption is that it is the
person’s fault for their lack of tolerance, whereas it is the practitioner’s duty to assess, plan and implement care in a personalised way,
which maximises tolerance and utilises their knowledge and understanding of what can work for the patient. Hughes and Green (2019)
examined the root cause of poor ‘compliance’ with compression
hosiery. The themes they identied were discomfort and pain, issues
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Box 7.2 A Patient’s View onthe Term
‘Non-
compliant’– Tracy, Legs Matter
Patient Partner
I had never heard the term before and did not know what noncompliance meant! So the thought that I could have been labelled
as non- compliant or non- concordant is actually quite upsetting as
I believe I am a good patient. I have put up with so much over the
years in terms of pain and discomfort and I have always tried any
treatment I have been oered. However, there have been times
when it has been too much for me and I have pulled my compression hosiery o (or cut the bandaging o in the early days). I
would challenge anyone to be 100% compliant all of the time. Life
gets in the way and coping with chronic pain is really hard at
times. When I had a painful dressing, I would absolutely dread it
because I knew I would be in extreme pain for the whole day and
all night. I would cry all night because the pain was so bad,
because I was so tired and knew I would struggle the next day
looking after my children. I am ashamed to say that I would take
extra pain relief because I was so desperate for a good night’s
sleep. There would only be so much I could deal with and after a
few weeks, I would ask the nurse to try a dierent dressing.
Patients don’t choose to be ill or to need medical treatment and it
is very hard to remain 100% perfect when your quality of life is
gradually disappearing down the drain. If this meant that I was
non- compliant, then this is hard to accept when I am only human.
What I would ask clinicians to reect on:
To discuss this with the patient so they are not given a label
they are unaware of; it is not fair treatment.
To ask why they are not able to adhere to the treatment; there
may be multiple answers than can be managed.
To avoid this type of labelling, to understand that a patient’s
life can be hugely complex and they have a lot to adjust to.
Has the reader ever not adhered to the advised treatment plan
or instructions that they know would improve their personal
health? If yes, reect on why that was and bring that learning
into leg ulcer management.
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with application, education and understanding, and aesthetic issues
with the hosiery. The topics that led to the primary themes were very
personal and included embarrassment, reliance on others, pain and
limited belief in the ecacy of the hosiery. Thus, people with leg
ulcers can express both intentional and nonintentional noncompliance (Moatt etal.2017). This demonstrates the inadequacy
of the term non- compliance within the clinical situation: it does not
help to address the multifaceted underlying issues or the fact that,
within their view of the world, the lack of adherence may be a sensible option for them in their context of their social environment, comfort and balancing the management of their life. The clinician needs
to see beyond the term non- compliance in order to have an open and
creative personalised discussion so that a co- created management
plan can be developed. Box7.2 provides the lived experience of someone with leg ulcers.
It is well- established that the achievement of comfortable compression is key to leg ulcer management, and that applying compression eectively is a skilled procedure that needs consistent provision.
When these are lacking, the person should not be blamed– rather,
practitioners should seek to address the issues that are creating barriers to eective compression. In the same way that we need to believe
that there will be a successful outcome to going to the gym, changing
our diet or walking more, the person with leg ulcers needs to see and
believe in the power of compression therapy to create the healing
they desire. Practitioners and the person with leg ulcers need to
understand that application is more than a task, and that the focus of
intervention and desired outcome should be making treatment tolerable and eective. Such demonstration and understanding will have
a benecial impact on the culture of leg ulcer management.
It is evident then that personalised care and an understanding of
the impact of social determinants contribute to the holistic approach
required to create an eective healing environment. A shared
approach to care planning is needed if care is to be truly holistic.
Starting from, or at least taking into consideration, the person’s experience provides the foundation for the delivery of eective care and
education that supports empowerment and self- management. It is
essential that practitioners develop awareness of and start to challenge the barriers to care within the culture of nursing and healthcare delivery in order to achieve this.
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UNDERSTANDING THELIVED EXPERIENCE
Practitioners must make themselves aware of what it is like to live
daily with a leg ulcer. Arguably, it may be possible to become
de- sensitised when working with people with leg ulceration daily.
Numerous qualitative studies explore people’s experience and the
impact of having a venous leg ulcer (Green et al. 2014; Cunha
et al. 2017; Hopkins 2004; Phillips etal. 2018; Leren etal. 2020).
These studies identify that people with leg ulcers experience signicant pain, sleep disturbance, diculties with footwear, problems
with odour and exudate, and mobility issues. This can result in signicant negative social and psychological impacts, and in severe
cases can lead to social isolation, a negative body image and even loss
of work. Green etal.’s (2017) study participants described the impact
of exudate and odour on their daily lives, creating ‘embarrassment,
shame and stress’; in order to bring some control into their life they
‘may make a conscious decision to limit social contact, creating an
almost self- imposed isolation’. This is because they feared others’
reactions and this therefore altered their daily lives (Green etal.2017).
Some patients are more marginalised than others and this is explored
further by Geraghty (2021) when listening to the lived experience of
patients who inject drugs.
There is a growing narrative in leg ulcer management that people with leg ulcers primarily want to have better symptom management rather than healing. It is dicult to argue against this need for
improved symptom management, but in reality very few people want
to live without hope of healing. The majority of people with venous
leg ulcers should indeed heal if the healthcare system worked swiftly,
allowing fast use of compression therapy; healing is the outcome that
services should be aiming for. Thus, practitioners should listen carefully to the underlying assumptions being made within publications
and case studies where this secondary focus of improved life is elevated above healing, leading again to the belief that healing is not
achievable.
Unfortunately unless the health system allows early intervention
and excellent use and review of high compression, then many more
people are destined to descend into painful leg ulceration. People
often agree to tell their story, to reect on their issues, in order to
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provide learning from their experiences to prevent others from having
the same. There is now sucient evidence and knowledge to enable
the vast majority of leg ulcers to be managed eectively. We need to
ensure that the healthcare system is joined up and that determinants
of health are considered holistically if we are to safeguard future
lives. To move away from the medical model of care, other resources,
tools and approaches can be drawn on to create greater agency for the
person with a lower limb condition.
SUPPORT PERSONAL HEALTH MANAGEMENT
THROUGH PATIENT ACTIVATION
Patient activation is an umbrella term for helping the person with leg
ulceration to manage their own health and care, but it is important to
break this down so that we can see the steps, the inuence and also
what it is not. Table7.9 explains this.
A review on patient- centred intelligence (Strategy Unit and Ipsos
MORI2021) provides a useful tool from which to evaluate a patient
activation and engagement strategy. The review describes three steps:
the easy to implement such as communication, patient letters and
care planning; the organisational change such as patient access to
records and shared decision aids; and the nal and more complex
TABLE7.9
Patient activation identies patients’ willingness and ability to take their
own actions to manage their health and care. The Patient Activation
Measure (PAM) tool helps identify where they are in this process and will
help in practitioners’ understanding.
Activation is not a focus on getting the person to comply with the advice
given. The focus is on the development of skills, knowledge and
condence in order to support this.
Activation is part of an engagement strategy. Practitioners have dierent
ways of engaging patients in this journey and they range from the simple
to the more time- consuming.
Source: Adapted from Hibbard and Greene (2013).
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The rationale forpatient activation.
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oer that will be suitable for a specic cohort such as peer support
and motivational interviewing. Thus, one size does not t all, but has
to be tailored to the needs of the patient.
PATIENT ACTIVATION MEASURE
PAM is a validated questionnaire designed to measure the knowledge, skills and condence a person has to manage their health and
well- being (NHS England 2019b). Importantly, this tool captures
their belief about their ability and the likelihood of them acting on
this belief. This is very much linked to understanding where a patient
believes their level or locus of control is, whether it is internal belief
(and within their control) or resides externally through others such
as health practitioners (Ingleby2020). Addressing this locus of control therefore is by activating the patient through building their
knowledge and condence in creating change. The PAM tool provides an individual activation score of 1–100with four levels of activation and is described in Table7.10. The higher the score, the more
engaged or activated the person is to bring in actions to improve
their health.
SHARED DECISION- MAKING
A plan of treatment needs more than clinical knowledge. With the
exception of some clinical tasks or diagnostics, the person you are
working with has to live all the time with the treatment plan you
devise. For this to work for them they need to believe that it will be
eective, that the diculties they encounter will be worth it in the
end, that they will see the good eects of the treatment plan and that
underpinning all of this is that their humanity is recognised. The
plan of treatment needs to resonate or meet with their understanding
and a clinician needs to create a space for that to work.
Shared decision- making is both a philosophy and a process
(Health Foundation2010). By allowing time to explore the person’s
world view and their understanding, there is a subtle shift in the
power dynamics: you are emphasising that their views on what will
or will not work will be listened to and taken account of. Delivery of
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TABLE7.10
Level 1: Disengaged and overwhelmed.
Consider that they may have too many health or social concerns to focus on
the leg ulcer at the moment.
Level 2: Becoming aware but still struggling.
You may hear them express their desire to change an action but the
behaviour does not meet this.
Level 3: Taking action.
You may see that a suggestion is acted on or their own simple goal is met.
Level 4: Maintaining behaviours and pushing further.
These citizens are simply easy to work with as they are taking control of
their health because they have the knowledge, skills and condence
to do this.
Source: Adapted from NHS England (2019b).
Patient activation scoring inthe patient activation measure.
tasks such as compression are adjusted to what the patient believes
works for them or needs to be tackled.
Exploring and listening are the basis from which to progress from
improving the person’s knowledge, thereby building self- condence
and enabling steps to be taken in their self- management and empowerment; these are the steps needed to create change or greater control.
Within the prevailing healthcare culture, people with leg ulcers and
their families need to have information to be advocates for themselves
and to be inuential in their own health outcomes. This requires a
move away from a medicalised model of care delivery where ‘dialogue
may be paternalistic and imposed rather than negotiated’, encouraging people with leg ulcers to disengage from their care-
givers as they
do not perceive themselves as equal partners (Green and Jester2019).
To enable shared care, knowledge ow between the practitioner
and patient needs to increase. Both need to be active participants in
this change. Practitioners need to move from passively attending
study days and knowing how to apply a compression regime, to
actions that include bringing critique to the culture they work within,
actively listening and sharing in the setting of treatment goals and
plans with their patients. People with leg ulcers need to move from
being passive recipients of care to feeling encouraged to listen to their
body, identify what helps or hinders their tolerance and be bold in
describing this and asserting their needs.
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