Adult Cancer Survivorship Programme
NHS Birmingham East and North Test Community
Case Study
Tumour Group: Breast
Pan Birmingham Cancer Network (PBCN) and NHS Birmingham East and
North (BEN) have worked together throughout the testing process to develop
five projects within the National Cancer Survivorship Initiative (NCSI)
programme of work. This programme of projects targeted breast cancer
patients with a BEN GP treated at Good Hope Hospital (GHH), a hopsital site
of Heart of England Foundation Trust (HEFT).
CARE (Cancer Awareness and Recovery Enhancement) was born following
some work that had been undertaken across PBCN into the inpatient breast
cancer pathway. We wished to further develop the breast cancer pathway by
looking at the survivorship phase for this tumour group working with HEFT
and BEN.
PBCN, BEN and HEFT came together as a partnership to conduct a focus
group with patients from Good Hope Hospital. The focus group looked
specifically at follow up. This was a natural progression from the work we had
completed in defining an appropriate length of stay for the majority of breast
cancer patients.
The focus group was held in April 2008 and we were hoping to determine the
benefits patients perceived from follow up. We were also interested in how
this could be improved and how we could redesign the service to meet the
patient’s needs.
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The questions we asked were:
1. What was follow-up for?
2. What went well?
3. What was not so good?
4. If they had a blank sheet of paper how would they structure follow up
This exploratory piece of work was exceptionally enlightening and formed
the basis for the approach taken.
Key points identified were:
 Holistic needs – to be more than a body
 Information needs – how to move forward with life including the elements
of structured education and self care
 Requirements of different age groups – e.g. Child care challenges whilst
undergoing treatment
 Place of follow up – the negative impact of returning to the physical area of
diagnosis
We wanted to identify the ‘what and how’ of how different approaches to
follow-up can be implemented, whilst exploring the complementary nature of
social care and how this dovetails into health care along with peer support.
Following the focus group findings the three organisations met together and
looked at ways of addressing the unmet needs. It was at this point that
Macmillan became aware of what we were looking to address and
approached us to test a self management course which was the HOPE
(Helping Overcome Problems Effectively) course as part of the project and the
PPiC (Patient Partners in Care) course for professionals.
BEN had previously commissioned Pfizer Health Solutions (PHS) to develop
Birmingham OwnHealth a telephone support service for patients with long
term conditions. They wished to look at adding a cancer module to the
service but after lengthy discussion BEN and PHS made the decision to
develop OwnHealth CARE with PHS and Health Care at Home as a
subcontractor to deliver the service.
Bridges was a successful service in other areas of Birmingham addressing
the social care need within cancer. BEN was already using this service for
end of life. It was thought that Bridges may address the social care needs
associated with treatment for breast cancer patients. Bridges is supported by
Macmillan and is part of Murray Hall Trust.
The nurse specialist role within the provider arm of BEN was already in place
but was challenged due to being spread thinly across several tumour sites. It
was agreed to test this role solely for breast cancer patients. It was further
hoped to develop the service links with the acute MDT whilst continuing to
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deliver within level three and four of Macmillan intervention which Macmillan
were agreeable to.
PBCN had been discussing follow up for a little while and after discussion with
the tumour site specific group had reduced follow up to three years for breast
cancer.
The three organisations (PBCN, HEFT and BEN) agreed on a definition of
survivorship, which was that survivorship began from diagnosis.
Project Structure
Project Board
Operational
Group
OwnHealth
and Hospital
Care Work
Stream
Nurse
Specialist
Work
stream
Self
Management
Work stream
Follow Up
Work
Stream
Evaluation
Work
stream
Technology
Workstream
The project board membership consisted of senior management including the
deputy Chief Executive of NHS BEN, the Cancer Commissioning Managers
from neighbouring PCT’s that also had patients at Good Hope Hospital,
National and Regional representation from Macmillan, senior management
from PBCN, senior management from PHS, representation from NHS
Improvement and also clinical management from HEFT. At the beginning of
the project we had a patient representative on the board but due to ill health
she needed to step down. The board made the decision not to reappoint to
this post as there was patient representation within the operational group.
The operational group membership consisted of workstream leads, a patient
representative, representatives from all partner organisations and also a
representative from NHS Improvement. The individual workstreams consisted
of a workstream lead, project manager (SIF) and staff who directly interfaced
with the patients.
The operational group met on a monthly basis. This meeting provided the
opportunity for each workstream lead to feed into the whole project. Each
workstream completed a flash report on a monthly basis that was shared with
the group members and the risk log was also updated. A rolling agenda was
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in place for the operational group and minutes and the risk log were sent out
to the whole group following the meetings.
The operational group fed into the project board. At the project board an
overview of the progress and flash reports were presented and it was at the
project board that permission was sought for changes and risks mitigation.
Having the three tiered approach to the project of the working groups,
operational group and project board ensured that there was engagement from
each organisation. This was at all levels and the project was well positioned
with ownership being maintained by the partner organisations.
As part of NHS BEN’s process we were required to take the project prior to
commencement through a gateway process. For this we had to develop a
project plan, undertake some economic modelling with finance at PCT level,
complete an equality impact assessment and utilise the Oscar framework to
model the project. OSCAR stands for organisational, satisfaction, clinical,
activity and resources. Utilising the OSCAR framework was very beneficial as
it kept the operational group focussed in the early days on what we wanted to
do, how we were going to do it but just as importantly how we were going to
measure its effectiveness.
The OSCAR framework for the CARE project can be found on the next page.
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Birmingham Service Improvement Project: Survivorship
Aim: To redesign and implement a new patient pathway for follow-up and support services for breast cancer survivors treated within Good
Hope Hospital.
Objectives: To establish a holistic follow-up and support service for breast cancer survivors which would be an adjunct to current secondary
follow-up; offer a ‘directory of services’ for patients to choose their preferred follow-up; and, fully evaluate the service with the view to roll the
programme out to other tumour groups.
Overall Project Evaluation
Service Intervention
Outcomes Framework
Organisational:
Satisfaction
Clinical
Activity
Resources
Measurement Instruments





Work stream meetings
Operational meetings
Issue and Risk Log
Staff satisfaction
survey
Incident reports




Pt satisfaction survey
Staff satisfaction
survey
Focus Groups
Discovery interviews



Holistic Needs
assessment
QLACS
Typology data

Activity Data


Averted
admissions
Utilisation of
services
Outcomes





Improved Patient satisfaction
Improved staff satisfaction
Improved staff skills, competencies,
knowledge
Model that works
Effective communication
 Generic and cancer specific quality
of life
 Confidence to engage with health
and health professionals
 Satisfaction with services
 Service Uptake
 Averted admissions
 Reduction in GP and chemo unit
attendances
 Reduction in unmet need
 Accessing services
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NHS Improvements reporting system afforded a further monthly opportunity
for reflection. The project had to report via the improvement system to the
national team and the Gant chart tool was also of benefit to the project. The
Gant chart is below.
As part of the workstreams and operational group we used PDSA cycles to
review the effectiveness of the previous month’s changes. Where necessary
we adjusted the testing as we went along to achieve the best possible
outcomes for patients. This was easier for the HOPE course as these were six
week courses and as there were three separate cohorts. Any issues from the
previous course were addressed before the next course.
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Each workstream lead was required to produce a flash report on a monthly
basis and this was presented to both the operational group and project board.
A blank example of the flash report used is below.
The Breast Pathway
The operational group had mapped the pathway from referral to follow up for
breast cancer patients prior to testing and had highlighted where the new
services would fit within this pathway.
On the next page you will find a map of the pathway. The blue boxes are the
projects that were tested and where in the pathway they fit.
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The Care Projects
OwnHealth Care is a service designed to support people who are living with
and beyond breast cancer. They must have completed their active phase of
treatment at Goodhope Hospital and be registered with a BEN GP.
OwnHealth Care is a partnership between BEN and PHS, with the service
delivered by Healthcare at Home, part funded by Macmillan.The service was
delivered by a dedicated team of experienced cancer nurses, known as Care
Managers.
Patients were referred to the care managers from either, their breast surgeon,
oncologist or breast care nurse. The patients were referred immediately post
active treatment or at years one, two or three if they were already in the follow
up phase. Clinical letters were sent to individual GP’s following initial and
subsequent holistic needs assessments. These include information on each
patient’s individual care plan. All enrolled patients were also provided with a
care booklet.
The objectives for this workstream were to:
 Provide a holistic service, using the concept of motivated support and
health coaching, to ensure the patient is doing everything possible to
support their wellbeing.
 To allow patients to develop a better understanding of the factors affecting
their health
 To help them to build the confidence and skills to cope with, and
overcome, the anxiety of living with and after cancer
 To empower patients to make any lifestyle changes they wish to reduce
any future health related risks
 To support them to follow their treatment correctly, helping them to
understand more about any medications they may be taking
 To understand how to engage with, and use, local NHS, social and
voluntary services that may be required
 To provide health and support to the patients family or carers if necessary.
 To ensure that all patients have an agreed and understood care plan to
enable them to move from patient to survivor.
The setting up of the Ownhealth® Care service faced several challenges. The
IT issues were significantly compounded by the fact that we were transferring
patient details from an NHS organisation to a non NHS organisation. A
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significant challenge was that we needed the acute provider to transfer patient
information to Health Care at Home. In order to do this they needed to set up
an electronic system to enable the transfer to happen. There was limited
benefit to the acute provider and also a lack of understanding within the IT
team about the project.
Barriers were overcome in a number of ways. The steering group opened the
correct door in the Trust and the SIF facilitated joint meetings between the
differing IT teams to gain a shared understanding of what was required.
The other major issue was recruitment to the Care Manager posts. We
required experienced breast care nurses and they were to be badged
Macmillan. They were to be employed by Healthcare at Home and therefore
would not be entitled to NHS benefits. This created a very small recruitment
pool. However three highly experienced Care Managers (2.2 WTE) were
successfully appointed.
There had been a total of 44 enrollments to this project to the beginning of
September 2010 and there were 37 active members receiving input from the
Care Managers.
The full results of the testing are still awaited as we have just sent out our
Picker evaluation questionnaires. Even though we had calculated from two
separate sources the approximate numbers of patients that we would expect
to use the various services within the model the actual numbers that have
used the services are far less than anticipated. To date we have been unable
to explain the disparity.
On a monthly basis PHS produced a management report which was sent to
the Cancer Commissioners at BEN detailing the activity for the months prior.
The number of contacts, type of contacts and details on comorbidities of the
enrolled members were also included.
The management report for August 2010 is below.
Pfizer Health Solutions
Data Extraction Date: 01/09/2010
2
10
Pfizer Health Solutions
NB – the male patient is a
patient within the
survivorship phase of breast
cancer.
N=42
Data Extraction Date: 01/09/2010
5
Pfizer Health Solutions
N=42
Data Extraction Date: 01/09/2010
7
11
Pfizer Health Solutions
n=42
Data Extraction Date: 01/09/2010
8
Data Extraction Date: 01/09/2010
11
Pfizer Health Solutions
12
Pfizer Health Solutions
Data Extraction Date: 01/09/2010
12
Pfizer Health Solutions
N=42
Data Extraction Date: 01/09/2010
13
13
Pfizer Health Solutions
n=36
Data Extraction Date: 01/09/2010
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A total of 27 patients receiving OwnHealth CARE completed the Quality of
Life in Adult Cancer Survivors (QLACS) questionnaire. This questionnaire
measures Generic QoL, Cancer-Specific QoL, and Benefit-Finding. The
domains of Generic QoL that are assessed include Fatigue, Negative
Feelings, Positive Feelings, Sexual Function, Cognitive Problems, Physical
Pain, and Social Avoidance. The domains of Cancer-Specific QoL that are
assessed include Distress over Recurrence, Appearance Concerns, Familyrelated Distress, and Financial Problems
Descriptive Statistics
Table 1 illustrates Generic and Cancer-Specific QoL domains in descending mean
order of those domains causing the greatest problems at baseline.
Table 1: Baseline Generic and Cancer-Specific QoL domains in descending
mean order of those causing the greatest problems
QoL Domain
Fatigue
Positive Feelings
Distress over Recurrence
Sexual Function
Negative Feelings
Family-related Distress
Appearance Concerns
Cognitive Problems
Physical Pain
Social Avoidance
Financial Problems
Baseline Mean (Higher score = greater
problems)
15.84
14.92
14.40
14.09
11.80
11.76
11.72
11.28
11.20
10.12
7.64
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As can be seen in Table 1, on commencing OwnHealth CARE patients were
experiencing the greatest problems with fatigue, positive feelings, distress
over recurrence, and sexual function. The most frequently reported
problems post-intervention will be compared to this when more data has been
collected.
Table 2: 6-months Generic and Cancer-Specific QoL domains in descending
mean order of those causing the greatest problems
QoL Domain
Positive Feelings
Fatigue
Distress over Recurrence
Negative Feelings
Family-related Distress
Appearance Concerns
Sexual Function
Physical Pain
Cognitive Problems
Social Avoidance
Financial Problems
6-months Mean (Higher score = greater
problems)
17.78
14.22
13.00
11.11
10.17
9.89
9.00
8.78
8.22
8.11
5.67
As can be seen in Table 2, on completion of the 6-months questionnaires,
patients were experiencing the greatest problems with positive feelings,
fatigue, distress over recurrence, and negative feelings. Compared to
baseline, emotional problems appear to have overtaken fatigue, and sexual
problems are now of less concern.
Changes in QoL
A total of 7 patients have completed Baseline (Time 1) and 6-months (Time 2)
questionnaires. Using a paired samples t-test, improvements can be seen in
all QoL domains, the following of which are statistically significant:
Sexual functioning was significantly more problematic at baseline (m=15.00)
than at 6-months (m=12.20) (t=2.89, df=4, p<0.05).
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Distress over Recurrence was significantly worse at baseline (m=14.57)
than at 6-months (m= 11.86) (t=2.45, df=6, p<0.05).
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Cancer-Specific QoL was significantly worse at baseline (m=44.51) than at
6-months (m= 38.13) (t=2.63, df=6, p<0.05).
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Patient stories (see appendix 1) demonstrate examples of the quality of care
the breast care nurses have collectively been able to provide. The stories
provide a small insight into some of the interventions and support provided.
Below is a list of other areas where the specialist breast care nurses have
been able to provide support, reassurance, knowledge and advice:



















Weight management
Exercise
Sexual issues
Relationships
Genetics
Return to work
Fear of recurrence
Body image/confidence
The management of co-morbidities e.g. Crohn’s disease, diabetes and
arthritis
Side effects of treatment
Depression
Fatigue
Follow-up appointments
Financial/insurance
Lymphoedema
Reconstruction
Insomnia
Returning to ‘normal’ life
Loss of confidence
For the purpose of the project the role of the Macmillan Primary Care Cancer
Nurse (MPCCN) was redesigned to provide support in primary care for
patients undergoing treatment for breast cancer.
The MPCCN was integrated into the breast cancer multidisciplinary team at
GHH and she attended the weekly meetings. Attendance enabled the
identification of potential new patients. It also provided a forum for informal
clinical supervision by giving the MPCCN the opportunity to discuss clinical
issues with the team therefore reducing the effects of isolation on the post
holder.
The MPCCN was a lone working post and therefore when the nurse was on
annual leave or off sick there was no cover. Although this wasn’t an issue it
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potentially could have been if the MPCCN had been poorly for any length of
time.
To raise the profile and develop an understanding of the role, the MPCCN
presented the service to the breast MDT and oncology nursing team. Patient
information leaflets were also devised which were made available to the
breast care team and oncology team. The leaflets were given to appropriately
complex patients at the time of referral. Clinical letters were also sent to
individual GP’s following the initial and any subsequent holistic needs
assessments including information on each patients individual care plan.
The MPCCN utilised expert communication skills to assess and explore the
psychological impact on each patient, anxiety and depression scores are also
undertaken where appropriate.
Specialist support, training and supervision have been provided to the district
nurses by the MPCCN to enable them to maintain patient’s central venous
catheters at home throughout the duration of their chemotherapy treatment.
An audit into the District Nursing educational needs was conducted by the
MPCCN and the interim findings are below
Oncology District Nurse Teaching Primary Care Audit
Audit Completed
Response Rate
March 2010
80 sent 69 returned = total 85%
The main findings from the audit:
 Over half of the respondents scored 5 or less (1 being poor 10 being
excellent) in feeling competent in the management of CVC lines.
 78% of District Nurses have not completed competencies for the care
of CVC lines within the community.
 Of the 20% (N=14) who had completed competencies only 1 of these
had attended a yearly refresher training session.
This highlights a gap in the training and education for district nurses in this
aspect of care for cancer patients.
District nurses also reported that to deliver more effective care to patients with
a cancer diagnosis the following should be available:
1. Education and training on:
 Different treatments for breast cancer
 Services available to patients and district nurse teams
 Symptom control
2. More time and support from Macmillan Specialist Services to be
available
3. Improved communication between services
4. More specialist practical hands on within the community
5. Training to be available to all bands of nursing.
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How were the results disseminated?
The results will be disseminated to:
 District nurse team leaders
 District nurse managers
 The Education and Development Department
 Cancer Survivorship operational board
Since completing this baseline audit the MPCCN has continued to provide
informal education, training and supervision to District Nurses. The PCT are
looking at different ways in which training can be delivered including inviting
external agencies in to provide formal education programs, however this work
will be ongoing to address the needs of the District Nurse teams. Meetings
are planned with the MPCCN, intermediate care and IV therapy teams within
the trust to address this ongoing problem.
Patients can be referred from any point following diagnosis but the majority of
referrals are by the oncology team whilst undergoing chemotherapy with the
majority of patients being referred by the oncology nursing team. It was
reported during the PDSA cycle that oncology nurses found the referral forms
time consuming and at busy times or times of short staffing the number of
referrals diminished. As result of this the MPCCN now accepts telephone
referrals which the oncology nurses are able to do and the admin assistant
records relevant details.
As part of testing the MPCCN has maintained records of hospital admissions
avoidance. These have been validated with the oncologist, chemotherapy
CNS and the MPCCN. Only cases agreed as definite hospital admission
avoidance by all three have been included.
At present the MPCCN service has averted 32 inpatient admissions, 16 of
which would have been for neutropenia. 243 out patient visits and 158 GP
visits were also avoided. This equates to a conservative cost saving of
£43,088.
This has been calculated using an average of 5 day length of stay for the
neutropenic patients at £200 per day, the other 16 were calculated at £200 for
a one day admission. The GP rate used was that of £22 per appointment and
the rate used for outpatient’s appointments was £84 for a multi professional
follow up appointment.
Specialist Nurse Care patient experience survey
A total of 17 patients who have received specialist care from the MPCCN
have completed the patient experience survey.
Questions
The following statements were rated on a 5-point Likert scale of: all of the
time; most of the time; some of the time; none of the time; and I don’t know.
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1. The health professionals involved in my cancer care have worked like
a team.
2. Different health professionals involved in my cancer care have given
me consistent advice.
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3. I have been included in decisions about my cancer-related health
care.
4. Professionals involved in my cancer care have treated me with
respect and dignity.
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5. Overall, how would you rate the quality of cancer care and services
available to you? Excellent; very good; good; fair; poor.
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Qualitative feedback regarding the overall quality of care could be categorised
into 4 themes.
Personal yet Professional:
“Out of all the department and staff that have helped me and my family, Jayne
has been wonderful. Such a kind and caring person, who has given help and
support with good sound advice in such a professional yet kind and personal
way. She is a credit and I hope she is appreciated. I wish her all the best and
will miss her visits.”
“My Macmillan Nurse has become a valued “friend‟ during the past 6-months
of my treatment. Her visits are unhurried, open and she makes me feel I’m the
most important “patient‟ on her schedule. She encourages me to speak about
where I’m at physically, emotionally, spiritually . . . She’s non-judgemental. I’m
always offered good sound advice backed up with where necessary referrals
or help obtaining suitable medication to help with symptoms relating to ongoing treatment. The fact that she provides the practical service of a “line
flush‟ of my Hickman line, means one less trip each week to the hospital,
which is a huge help.”
“Very professionally but friendly, talking to others with or had cancer I am
more positive, much weller emotionally and physically. I keep going more.
Home visits are much easier than the hospital, especially when I don’t like
blood or medical issues and my Macmillan nurse eased this. My husband has
R.A.S. and so hospital is not a place for him so he could meet healthcare
professionals at home. The children found it easier without mum having to go
to hospital as much an accepted chemo as a more natural part of life, which
as cancer affects 1 in 3 it is as much a part of life as other illnesses,
redundancy, celebrations, school, etc. I feel at peace and calm with thanks to
Jayne.”
Reassurance/Anxiety Reduction:
“Jayne has been supportive throughout my treatment, her reassurance has
helped me to cope with my anxieties and symptoms that cancer brings.”
“Without Jayne‟s help life could get very distressing and black, so well done
Jayne.”
“I feel the Macmillan Nurse gave me much needed reassurance when
undergoing chemo – lots of little tips that really helped. I also found her to be
cheerful, supportive and sensitive. I really looked forward to her visits. I think
the work of Macmillan nurses is invaluable.”
“The outreach aspect of care is vital, especially in dealing with fear and
pressure.”
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Reliable/Dependable:
“My Macmillan Nurse has been there no matter what, which I found a God
send; her caring manner and nursing skills are excellent.”
“Jayne is fantastic, she is so caring and knowledgeable, very easy to get on
with – nothing was too much for her.”
“Jayne gave to me chat, advice, and actions, all that I need, she is great.
Thank you.”
“Jayne is wonderful and helped me no end. I‟m beginning to wonder who I‟ll
turn to after the chemo ends. I shall miss her.”
Emotional Disclosure:
“Jayne let me talk about my feelings and I let go for the first time after my
diagnosis. She was absolutely brilliant.”
“She was always ready to listen to my concerns and was never in a rush. She
did her job perfectly and with passion, making sure I was pleased in all areas.”
Additional Questions
Response options varied by item and are described in the appropriate
sections.
6. Were you referred to the Macmillan Nurse at the right time?
Strongly agree; agree; disagree; strongly disagree.
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Qualitative feedback regarding the overall quality of care could be
categorised into 4 themes.
The Right Time:
“She came just at the right time.”
“Right from the beginning her support was there.”
Distressed
“I was referred by the district nurse to the Macmillan Nurse as I was very very
low and distressed, but when Jayne came I felt as if someone cared about me
and understood my problems.”
On Commencing Treatment
“I was referred to immediately after my first dose of chemotherapy and this
saved me the time for regular hospital visits for my line flush.”
“I reacted to chemo with sickness and Jayne visited twice in 2 days. This was
a great support to know it was ok and to give advice.”
Hickman Line
“I was referred to the Macmillan Nurse when I had my line fitted and she came
to clean it every week.”
7. Did your Macmillan Nurse help to ease any of the following
symptoms: physical; emotional; spiritual; sexual; financial?
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Qualitative feedback demonstrates the benefits of the holistic approach to the
care and support provided to patients:
“She advised me on ways to cope with physical symptoms as well as did
some drug prescriptions. She was more friendly and ready to hear my
concerns and worries.”
“Jayne became a loyal friend, she became my right arm, I looked forward to
seeing her and speaking to her.”
“Jayne has always been willing to give help and advice on every visit and with
any issue.”
“Whatever symptom I was experiencing my Macmillan Nurse was more than
helpful in every way.”
“Jane was a great help emotionally, also, Jayne has applied for a grant so I
can take a short break, for when my treatment ends, which will be wonderful.”
“I was referred to a therapist to enable me to cope with the stress of the
diagnosis and coming to terms with the treatment.”
“Extremely helpful and appropriate advice delivered in a manner suitable for
my background/age, etc. Excellent.”
“I found that talking to my nurse helped me a great deal in all aspects,
reassured me when I need it most.”
“Jayne gave me advice when she thought it was necessary to consult a
doctor.”
“She was ready to come over whenever I called her and even took blood tests
at home for check-ups. She did physical examinations as well when my mouth
was sore.”
“She is lovely to talk to, and gives perfect advice.”
“Especially with on-going difficulties with nausea by changing medication.
Also, Jayne told me about Cancer Centre in Sutton, where she referred me. I
have had two aromatherapy sessions, which have helped a lot.”
“The Macmillan Nurse prescribed treatment for my side-effects of the chemo,
which helped me an awful lot, and when I was having a bad day she made me
realise its normal.”
“Very supportive during home visits and telephone conversations. Prepared
me or reassured me. Spiritually, I have my own faith plus church to draw on.”
“Jayne completely understand and the silliest of things you think or feel she
offers support and information. She has also provided help with DLA and
insurance forms.”
8. Did the specialist advice and support given to you by your Macmillan Nurse
reduce the number of times you needed to visit your GP or Oncology Unit?
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The qualitative feedback suggests that reductions in GP and Oncology
appointments were primarily due to the Macmillan Nurse arranging
prescriptions and cleaning patients’ Hickman Line. Patients found home visits
of particular comfortable during times of illness:
“Reduced the number of calls I would make to the Unit.”
“I was quite ill with an infection after one chemo treatment and instead of
going into hospital Jayne came in to see me every day and phone.”
“I haven’t had to go to the Dr Surgery as my nurse got my prescription sorted
out for me. When I was quite ill after a chemo session my nurse worked
through it with me and I didn‟t need to go in A&E.”
“Jayne ordered tablets and flushed my hickman line, especially when I was
not well enough to get out.”
“At the start I was supported at home by a District Nurse who the reduced the
need for me to visit the hospital for line flushes and dressing changes.”
“Sorted out prescriptions via my GP. Provided literature for me to read up on
various symptoms in order to be able to help myself.”
“Jayne always knew what I needed and made sure I received just that.”
“I never needed any other visit as everything was taken care of by my
Macmillan Nurse.”
“Have only been to GP once so far and oncology only for chemotherapy.”
“Saves time if you are not well and in the comfort of your own home. Jayne
liaises with GP and arranges prescriptions.”
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9. Do you feel the advice and information given by your Macmillan Nurse
helped you manage treatment side-effects and symptoms more
effectively by yourself?
Qualitative feedback regarding self-management could be categorised
into 4 themes.
Coping with Side-Effects:
“From her information and advice I was able to differentiate symptoms and
know what action to take to reduce and overcome them.”
“Jayne has given many ideas and help with regards to managing my sideeffects and symptoms.”
“Without a doubt Jayne was very reassuring, the side-effects were a normal
part of the chemotherapy, and I was able to understand and deal with them.”
“Yes, she was very knowledgeable about what to take, she made the sideeffects of the chemo much easier.”
“My nurse gave me advice before the symptoms came or told me to call her.
Would be good if Macmillan was available 5, 6 or 7 days a week, not just 4.”
Referrals:
“Referred me to the local Cancer Support Centre which has a wealth of help
and information, treatments, talks, courses, etc. to support and help patients .
. . plus a very well stocked lending library.”
Skills Acquisition:
“The keeping of a daily diary has helped and I can refer back to it.”
29
Medication:
“By talking through medication, helped me manage better myself.”
Not surprisingly, given the positive ratings thus far, overall quality of cancer
care and service availability was rated as ‘excellent’ (94%) or very good (6%).
Qualitative feedback suggests that these high ratings were the result of the
MPCCN taking a personal and yet professional approach to working with
patients; in particular, she offered information, advice, and expertise whilst
also creating an atmosphere where patients felt able to emotionally disclose
their thoughts and feelings. This, along with the reliability of the support
provided by a MPCCN offered reassurance and reduced levels of anxiety in
some patients. As highlighted by one comment, however, there does need to
be some caution in terms of preventing dependency: “I‟m beginning to
wonder who I’ll turn to after the chemo ends.”
The data collected thus far provides evidence of a high level of patient
satisfaction with the services provided by the MPCCN, with some
improvements needed in terms of timing of referral. Multiple holistic benefits
have been reported from this service, with a particular emphasis on the close
relationship often formed between the patient and the nurse. Examples of
patient case studies are in appendix 2
The Bridges support service has been supporting people with cancer in other
parts of the West Midlands for over nine years. Bridges is managed by Murray
Hall Community Trust, a registered charity within the third sector and is part
funded by Macmillan.
Bridges person centred approach, which includes narrative based
assessments means care and support are tailored to individual needs. The
service is literally a bridge to access services from health, social and
community organisations and where there are gaps Bridges will spot
purchase services to provide appropriate support.
For the project Bridges CARE aimed to provide support to ensure that people
with breast cancer:
 Maximise their quality of life to remain at home
 Tailor support to individual needs
 Identify supportive care needs through a narrative based consultation
 Bridge the gap and help patients to access other services
 To provide transport support to enable them to attend their hospital
appointment and treatment
 To provide appropriate information
30
The Bridges Care service was developed to support a forecasted 150
patients. This figure was based on the number receiving a breast cancer
diagnosis at GHH and an estimation of those patients already in the follow up
system that may require Bridges Care.
The uptake to this service has not been as we expected but we had not fully
appreciated what was already available within the area. Breast Friends is a
charitable breast cancer support group for GHH patients and we had not
appreciated the amount of practical support that was already available and
provided from them. Breast Friends were already helping a large number of
patients by spot purchasing child care, ironing, cleaning and other household
duties.
Data
Interventions
Number of Referrals
No input required
Narrative Based Assessments
Number of clients requiring domestic care
Number referrals requiring Macmillan Citizens Advice bureau
Number referrals requiring transport
Number of Referrals requiring immigration support
Number of referrals made to MPCCN
Number of referrals to Lymphoedema service
Totals
59
20
17
9
5
27
1
2
1
Bridges Care patient experience survey
Seven patients who used Bridges Support Service have completed the patient
experience survey.
31
Evaluation Questions
The following statements were rated on a 5-point Likert scale of: all of the
time; most of the time; some of the time; none of the time; I don’t know.
1. The health professionals involved in my cancer care have worked like
a team.
2. Different health professionals involved in my cancer care have given
me consistent advice.
_
32
3. I have been included in decisions about my cancer-related health
care.
4. Professionals involved in my cancer care have treated me with
respect and dignity.
33
5. Overall, how would you rate the quality of cancer care and services
available to you? Excellent; very good; good; fair; poor.
Comments regarding quality of care:
Feedback regarding the quality of care could be categorised into six themes:
referrals; healthcare utilisation; financial support; emotional support; practical
support; and general. Assistance with transport and healthcare utilisation
appear to be an underlying core theme. One patient has also provided some
feedback on how the service could be improved to help mother’s with young
children to care for.
Referrals:
“Referred me to the local Cancer Support Centre which has a wealth of help
and information, treatments, talks, courses, etc. to support and help patients .
. . plus a very well stocked lending library.”
Healthcare Utilisation:
“I was so grateful to be put in touch with Bridges as I didn’t know where the
Queen Elizabeth Hospital was – let alone how I was supposed to get there
every day! Your help was invaluable to me and took a lot of worries off my
shoulders. Thank you.”
Financial Support:
“I am very pleased with the care and support provided to me by the whole
multidisciplinary team throughout my treatment. The house support sent to me
by Bridges helped me conserve some little energy to care for my daughter,
and the financial relief through the provision of transport to and from the
hospital was tremendous. I can only say “Thank you all.”
34
Emotional Support:
“Having spent my entire working life in the Social Work profession I can
honestly say that Bridges support have been absolutely wonderful. As I am 72
years old with a disabled husband and no family to call on Bridges has been
my lifeline during the most traumatic and stressful time in my life. Many, Many
Thanks.”
Practical Support:
“Help with cleaning very valuable but have struggled to cope gardening so
help here might have been a plus. Also help with children in school holidays
as I was very tired, also we have always gone swimming but with a Hickman
line I am unable to so. Someone to go in the water with them would have
been nice as we have always swam since children were 3-months old – just a
thought for future support for other mums.”
General:
~ “Your support workers, Alaya and Lyndsey, so pleasant and helpful.”
~ “I cannot thank Bridges enough for the help they have given me.”
~ “I wish to thank all your staff for the help and support I received during my
treatment. It was exceptional service.”
The Supported Self-Management Workstream of the National Cancer
Survivorship Initiative undertook to evaluate a self-management programme.
This was to form an integral part of a new service pathway for breast cancer
patients who had completed their treatment and were entering a new followup service. The work stream was led by Macmillan Cancer Support and was
composed of two arms, one for patients and one for clinicians.
Based on the evidence for effectiveness of an intervention to support selfmanagement (evaluation of the national DH implementation of the Expert
Patient Programme in England in 2002, and subsequent further research) the
model for this pilot aimed to include:
 the integration of the programme within the care pathway so that all
breast cancer patients were offered this after treatment end;
 the leadership and total involvement of the breast care specialist
nurses of this programme; and finally,
 the delivery of the programme by two trained facilitators, one a breast
CNS alongside an experienced breast cancer survivor.
Recruitment of participants was carried out via the post treatment (PT)
groups, offering the course to those patients within the BENPCT catchment
35
area. One person commented:’ after treatment you feel like there is a black
hole – all your support goes. In a way, you feel abandoned.’
What are HOPE courses?
The HOPE programme is a novel self-management programme designed by
researchers within the Applied Research Centre in Health and Lifestyle
Interventions, within the Faculty of Health and Life Sciences at Coventry
University.1 This programme is based on a range of theoretical concepts from
the areas of positive psychology and cognitive social theory. It has a flexible
‘shell’ which can then be tailored with patients and professional staff, to the
needs of specific groups – in this case for women following curative treatment
for breast cancer, in their transition from treatment to survivor.
The HOPE programme comprises six 2.5-hour sessions delivered over 6weeks. Course content is presented in the Table below:
HOPE Course Content
Session
Content
1
Introductions; instilling hope; self-management recovery;
better breathing; gratitude; preparing for change and goal
setting.
2
Feedback from goal setting; managing stress; guided
imagery; challenging unhelpful thinking; relaxed breathing;
goal setting.
3
Relaxed breathing; feedback from goal setting; body image;
physical activity; recording and scheduling pleasant events;
goal setting.
4
Relaxation/breathing; feedback; coping imagery; fear of
recurrence; managing fatigue; personal strengths; goal
setting.
5
Feedback on goal setting; communication; progressive
muscle relaxation; what makes us happy; building
confidence; goal setting.
6
Feedback; working with health professionals; finding
motivation; review of HOPE; sharing our successes.
The process
At the time of diagnosis, women were introduced to HOPE via the Breast
Care Nurses and later by the Chemotherapy Nurse. They were also provided
with more specific information in the form of participant information packs at
1
Dr Andy Turner, and Dave McHattie
36
the time of entering post-treatment follow-up (i.e. 6-weeks after their final
treatment).
Recruitment of patients to this programme was initially through an existing
post-treatment session delivered by breast care nurses. It proved challenging
to get the numbers that were initial thought possible. This is not a new finding
in the provision and support of self-management. It is also not unique to
cancer patients as it is can be found in patients with other long-term
conditions.
The outcomes
The selection of patient outcomes, amenable to improvement by a selfmanagement programme, was based on the theoretical and conceptual
underpinnings of the programme (Bandura, 1986; Snyder et al., 1996;
McCullough et al., 2004). It was expected that participants would:








Gain confidence in self-management
Gain confidence in seeking information
Gain confidence in communicating with health care providers
Improve or maintain healthy lifestyle behaviours
Feel more hopeful
Experience more gratitude
Experience an improvement in QoL
Report more productive, collaborative healthcare utilisation.
The learning so far
Participants:
The following statistically significant outcomes were achieved by 14
participants (see figure below):
o Improvements in Total Generic QoL – in particular,
improvements in Fatigue and Physical Pain
o Improvements in Distress over Recurrence (a component of
Cancer-Specific QoL)
o Increased Hope-Agency (confidence/self-efficacy to meet
goals)
37
Confidence to self-manage, as measured via the Health Education and
Impact Questionnaire (heiQ), improved in the main but did not meet statistical
significance. However, baseline self-management skills were high, exceeding
those of normative data, suggesting a possible ceiling effect.
Improvements in some components of lifestyle were also demonstrated,
including reduced smoking and alcohol consumption, as well as increased
levels of physical activity.
Qualitative data suggests that outcomes were largely influenced by the
theoretical underpinnings of the self-management programme. In particular,
increased self-efficacy and agency resulting from goal setting, social
support, and vicarious experience appeared to contribute to a positive
thinking style and the utilisation of self-management skills.
Nurses:
The HOPE course was a highly informative and formative experience for the
two CNS facilitators, leading to their increased knowledge and awareness of:



the powerful beneficial effects of such an intervention on patients,
a range of service issues and problems which were raised during the
course sessions of which they were not aware, and which they could
act on to make changes and improvements in service delivery.
And finally, a widening and enhancement of their own knowledge,
38
skills and attitudes.
In the future delivery of this programme, all breast CNS in pan Birmingham
will be involved in delivery and providing leadership. They will also have
influence in making it accessible for patients who are assessed and for whom
it forms part of their self-management support.
The supported self-management model that is going to be sustainable is the
provision of the HOPE course as part of the clinical pathway for all breast
cancer patients in Birmingham. It will be offered to all patients completing their
treatment. The CNSs will take the role of leader of the programme, assessing
and planning with patients what their needs may be for this programme, and
referring patients to the course as appropriate. They will co-deliver with the lay
tutor the first and fourth of the six workshops, increasing feasibility whilst also
providing the ‘influential’ professional as central to the promotion and delivery
of the programme.
Commissioners locally have found this model attractive, flexible and a good fit
with their existing provision of self-management support for their population of
people living with long-term conditions. Early costing has indicated that the
costs and benefits are competitive with other types of provision, and plans are
underway for this programme to be commissioned and delivered from October
2010.
The long-term outcomes of the HOPE programme are to be evaluated at 6and 12-months.
Recruitment:
For cohort one, the recruitment of participants was based on those attending
a recent post treatment group at Good Hope Hospital. What we did not know
at the time of planning this intervention was that although all patients are
invited to the post treatment group, approximately 50% decline attendance.
This immediately reduced the potential participant pool by half.
As the numbers were low following this route, for cohort 2 a different approach
was taken, it was felt that it was needed to recruit patients from alternative
sources (which was not part of the original plan) in order to recruit sufficient
numbers to make a viable pilot testing. As this was a new course, all of the
past PT attendees were written to and invited on to the course and posters
were put up in waiting areas. A taster session was also put on 10 days before
the course so that people could ask questions and find out more about its
content.
From the taster session, six people expressed an interest, and also an
additional four people responded from the mail out. Eight people started on
first week of course two, one person dropped out at week one due to work
39
commitments and one person dropped out at week two. The remaining five
participants continued on to complete the course. Anecdotal feedback from
the participants was that straight after treatment they were not ready for the
course but after a few months once things had ‘settled down’ they had more
time to reflect on what they had been through.
What we have learnt by this is that high proportions of patients who have
completed treatment for primary cancer at Good Hope hospital consider that
they need no further input following their treatment completion consultation.
This is either in the form of the post treatment group, or a course to aid
recovery and rehabilitation. There is a need, therefore, to develop effective
approaches which help patients to make a choice based on their needs for
support in managing after cancer treatment, whether this is in the form of a
short workshop (like the ‘post treatment group’) or, for a smaller proportion, a
longer more intensive intervention like the HOPE course. By so doing, we
could aim to provide interventions which attract appropriate numbers of
participants to make them both effective, attractive events for patients, as well
as being cost effective in provision.
Patient Experience Evaluation
Thirteen patients, who have attended, declined, or withdrawn from the HOPE
supported self-management programme have completed the patient
experience survey. Four were participants of the first HOPE programme, two
were patients who withdrew from the first HOPE programme, and two were
patients who declined the programme. Another four were participants of the
second HOPE programme. There was no significant difference in responses
between groups.
Evaluation Questions
The following statements were rated on a 5-point Likert scale of: all of the
time; most of the time; some of the time; none of the time; I don’t know.
1. The health professionals involved in my cancer care have worked
like a team.
40
2. Different health professionals involved in my cancer care have given
me consistent advice.
3. I have been included in decisions about my cancer-related health
care.
41
4. Professionals involved in my cancer care have treated me with
respect and dignity.
5. Overall, how would you rate the quality of cancer care and services
available to you? Excellent; very good; good; fair; poor.
Comments regarding quality of care:
42
“All healthcare professionals have worked as a team. My Macmillan Nurse
seems to be the integral part of this. She has referred me on to other services
in healthcare that I’ve needed, i.e. Lymphoedema, Psychology, etc.”
“Health professionals (most) have taken interest and care.”
“Been excellent – no complaints.”
Patient Satisfaction
Patient satisfaction with the supported self-management programme was
measured using the Health Education and Impact Questionnaire (heiQ). All
participants either agreed or strongly agreed with the following favourable
statements pertaining to the HOPE programme, indicating high rates of
acceptability:
 I intend to tell other people that the program is very worthwhile
 The program has helped me set goals that are reasonable and within
reach
 I trust the information and advice I was given in the program
 Course leaders were very well organised
 I feel it was worth my time and effort to take part in the program
 Difficult topics and discussions were handled well by my program leaders
 I thought the program content was very relevant to my situation
 I feel that everyone in the program had the chance to speak if they wanted
 The people in the group worked very well together
The HOPE course was highly acceptable to participants, some of whom are
now being trained as lay tutors.
The ‘Patient Partnership in Care’ Clinician Training
Programme
The second element of the supported self management input to the
project was a communications skills training programme. This was
aimed at improving and enhancing clinician skills for supporting
patients to self manage, and to develop a partnership relationship with
their clinician as part of their consultation.
Background
Senior cancer clinicians currently are supported to undertake a national
evidence based core communications skills course delivered through the
cancer networks by trained facilitators (the Connected Programme).
43
The idea that patient and clinician communication can enhance self
management is relatively new to cancer settings. According to the American
National Cancer Institute report of 2007 on ‘patient centred communication in
cancer care’,(Epstein et al 2007) patient clinician communications plays a
critical role in for example, determining who will engage with health enhancing
lifestyle behaviours which reduce cancer risk, or how effectively patients can
adhere to long term medication schedules. Enabling patients with a long term
condition to self manage is now recognized as a key function of clinician and
patient communication. In cancer care there is some catching up to do but
there is growing recognition that the need for a skills set which can effectively
support patients to solve health related problems and take actions to improve
health and wellbeing, to seek appropriate care when needed, to navigate the
health system and secure additional resources if needed, are crucial to the
success of new approaches to cancer aftercare and survivorship.
‘Patient Partnership in Care’ Course
Following an extensive review and mapping of skills training to enhance self
management, a novel training programme was selected to be delivered to two
groups of key cancer clinicians. The first group were involved in the care of
breast cancer patients at Good Hope Hospital, and the second group in the
care of adolescents and young people at Birmingham Childrens Hospital.
The course
The communication skills course (‘advanced development programme’)
selected was being delivered to large numbers of clinicians who provided
services for people with long term conditions in primary and secondary care
This was part of a national programme being funded by the Health
Foundation, called ‘Co-Creating Health’. The programme was developed as a
collaborative between the Health Foundation and CFEP UK Surveys. CoCreating Health is testing a ‘whole systems approach’ to implementing
supported self management across seven national pilot sites, the ‘advanced
development programme’ is a central part of this national project. For the
purpose of the CARE project we have named it ‘Patient Partnership in
Care’.(PPiC)
The skills which are covered as part of this training are considered to be
additional to those addressed as part of the Connected programme, although
in part of the first of the three PPiC workshops, some revision of core
communications skills is undertaken. We did not know at this time how many
of the future participants who would be undertaking the PPiC would have
previously completed the Connected course.
The PPiC is designed using conceptual underpinnings from motivational
interviewing, core communication skills, and positive psychology. It aims to
address what are core elements of successful supported self management
interventions:
 Assessment of patient specific needs and barriers (to self
management)
44




Goal setting
Skill building, particularly problem solving skills
Follow up – to enhance ongoing motivation
Increased access to resources and support
The objectives of the programme for the CARE project included:
 Transforming the patient-clinician interaction through improving
clinician’s skills in shared decision making and partnership working
 Enabling clinicians to receive feedback from their patients (through the
consultation) prior to the start of the programme, and following
completion of the programme, using a validated patient reported
outcome measure (the Patient Partnership in Care Questionnaire,
Powell et al 2009)
 Enabling the clinician to explore their journey to a collaborative
approach
 Testing out the relevance and feasibility of this programme for cancer
clinicians
 Illuminating what self management scenarios may be relevant to breast
cancer patients, and young people with a cancer diagnosis in follow up.
 Exploring skills with colleagues and actors in each session
Programme content and delivery
The programme is designed around three four hour workshops which were
delivered once a month for three months – January, February and March
2010. This allows for participants to go back to the workplace and to practice
the skills prior to the next workshop.
All participants were contacted personally by the Project Coordinator either
face to face or through telephone call, invited to attend, and content and
approach to the course discussed. Participants were aware that this
programme was a part of the overall CARE project.
Participants included:
 Breast surgeons
 Oncologists
 Clinical nurse specialists
 Psychologists (one was a Connected Facilitator)
 General practitioner
Recruitment to the programme
Eight weeks prior to workshop one, participants were asked to commence the
pre-course collection of the patient reported outcome questionnaire the PPiC.
Eight participants had administered some questionnaires to their patients, with
4 out of the 8 achieving collection of 18 or above.
Measuring the impact of the skills programme on patient reported
outcomes related to self management skills.
It is still rare for communications skills training in cancer services to evaluate
the impact of the training on patient outcomes. Most courses evaluate the self
reported impact on the participating clinician and satisfaction with the course.
45
Research to date has not adequately examined how the relationship between
communication and patient health outcomes may be mediated through the
effects of communication on behaviour change, adherence to medication, self
efficacy, for example.(Street et al 2009) Clarifying and explaining why
communication contributes to health outcomes requires more specification of
how specific well defined aspects of communication are linked to specific
outcomes, as well as the wide range of contextual factors which might
moderate or mediate the effects.
Figure 1 Direct and indirect pathways from communication to health outcomes
Street et al (2009)
The Patient Partnership in Care Questionnaire was designed to measure the
ability of health professionals to work in partnership with patients with long
term conditions to support and motivate self management (Powell et al 2009).
It is a 16 item questionnaire which also includes space for limited free text
responses. The tool has undergone testing for its psychometric properties.
Through a baseline survey, 97 clinicians gathered responses from 1,660
patients. It was found to have face and construct validity, good internal
consistency, and sensitivity to change. It has two uni-dimensional
subscales covering (i) patient-clinician partnership, and (ii) the patient’s
confidence to manage their long term condition. Health professionals who
participated in three four hour workshops focusing on skills training that
support self management showed a significantly improved score in both
subscales. The questionnaire was administered to patients before and after
training
Proximal outcomes:
- understanding
- satisfaction
- clinician patient agreement
- trust
- feeling ‘known’
- patient feels involved
- rapport
- motivation
Intermediate Outcomes:
- access to care
- quality clinical decisions
- commitment to treatment
- trust in system
- social support
- self care skills
- emotional management
Indirect Path
Communication functions:
- information exchange
- responding to emotions
- managing uncertainty
- fostering relationships
- enabling self management
- making decisions
Direct Path
Health Outcomes
- survival
- cure/remission
- less suffering
- emotional well being
- pain control
- functional ability
- vitality
46
Administering the PPiC Questionnaire to their patients.
In the CARE project, before the first workshop in January 2010, the clinicians
were asked to administer up to 18 questionnaires to patients they were seeing
in clinics, and were given 12 weeks to do this. If clinicians fulfilled this criteria,
they would receive a personal and confidential report on their scores and
benchmarks against others before the commencing the course. The aim of
this is to allow clinicians the opportunity to improve on skills, which need
attention, and build on skills which are already good in the future workshops.
They would therefore receive direct feedback. This process was to be
repeated around 6 weeks following the end of workshop 3 in March 2010.
Delivery of the Programme.
A contract was agreed with CFEP to deliver the three workshops which
included:
 Provision of 2 facilitators and 2 actors for each workshop
 Course materials
 Delivery of the workshops and their evaluation
 Supply and analysis of the PPiC questionnaires
The approach to delivery consisted of a range of presentation of material,
small group exercises and discussion, and action planning for one half of the
time, and coached skills practice with trained actors for the second half of the
time. It commenced at 0900 and finished at 1300. After each workshop the
facilitators followed up the participants by email to ascertain how the action
plans were being achieved. The venue was reasonably local to all, and lunch
was provided.
The following skills were addressed in the programme
Communication Skills Descriptors
Reflection/Empathy
Explore agenda/priority
Explore agenda: clarify
boundaries
Explore beliefs about self
management
Explore importance 0-10
Explore confidence 0-10
Support autonomy and choice
Double sided reflection
Explore ambivalence
Invite goals
Ask-before-advise
Paraphrasing – let the patient know you are
empathising
‘What were you hoping to accomplish at this
visit’? Something else?
Clarify what items can be accomplished
Invite patient to discuss how they view their
role in managing their condition and health
Importance of self management tasks on 010scale
Beliefs in their confidence to undertake self
management skills on 0-10 scale
Acknowledge decision making
Emphasising the patients dilemma of self
care can also help to explore choices
The reasons for change and the reasons not
to change
Before giving information or advice, ask the
47
Problem solving
Action planning
Ask the patient about the plan
made at the last interaction
patient what she knows, has already tried,
and wants to know
Invite solutions, help to derive many
possible solutions
Collaboratively develop a plan for self
management
Devise a way to follow up
The outcomes and experience of the programme
Fourteen clinicians commenced Workshop 1 in January 2010 and five
participants completed all three workshops.
The following table highlights the attrition from the programme over the
course of the three workshops.
Role
Location
1
Breast care
nurse
UHB
2
Breast Surgeon
Good
Hope
1
3
Oncologist
Good
Hope
1
4
Psychologist/
Advanced
Cancer comms
course trainer
Psychologist/
Advanced
cancer comms
course trainer
Breast Surgeon
UHB
1,2,3
UHB
1
Good
Hope
Good
Hope
1,2,3
BCH
1,2
BCH
1,2,3
BCH
1,2,3
UHB
1,2
5
6
7
8
9
10
11
Senior
Chemotherapy
Nurse
Paediatric
Oncologist
Assoc Spec in
late effects
Late effects
CNS
Consultant
Endocrinologist
Workshops
attended
1
1
Reasons
Unable to
attend due to
workload
Unable to
attend due to
workload
CNS
Facilitator
didn’t seem
appropriate
Unable to
attend due to
workload
Didn’t feel it
was
appropriate
Unable to
attend last
session due
to workload
No reason
given for non
48
12
Endocrinology
CNS
UHB
1
13
Macmillan
Primary Care
Cancer Nurse
GP
BENPCT
1,2
14
attendance at
3rd workshop
No reason
given for non
attendance at
2nd and 3rd
workshop
Unable to
attend due to
sick child
1,2,3
Six participants did not return for Workshop 2. This followed a challenging
situation in the first workshop where:
 The group was larger than anticipated, and did not allow for adequate
facilitation of small groups, and skills practice with the actor. The action
taken to address this included adding an additional facilitator and actor
so that for workshops 2 and 3 the group could be split in two for skills
training.
 Some individuals perceived that there was insufficient preparation for
the skills practice with actors – leading to a perception by some of a
lack of safety and care. This was addressed in Workshop 2.
 Some individuals felt that there was nothing new in this course that
they did not already understand and were skilled at, or that for some
was not relevant to their practice. The first part of Workshop 1 was
indeed ‘revision’ for some participants specifically those who had
attended a Connected programme in the past. On that basis they
perceived that there would be nothing in subsequent workshops which
would build any new skills, and therefore they prioritised their clinical
responsibilities over future attendance.
Three participants attended 2 out of 3 of the workshops – mainly for workload
reasons.
The challenging aspects of this programme for most participants were:
 not only the introduction to what for most was a new set of
communication skills;
 but also the context of addressing patient clinician scenarios framed
around ‘supporting self management’;
 and the style of practicing the skills in ‘thin slices’ with an actor, where
the facilitator was ‘coaching in real time’
Asking cancer clinicians to consider within the experience of their clinical
practice where and how their consultation could address the issues of
enhancing patient confidence to self manage, and develop partnership with
their patient gave rise to a range of responses. These were from it not being
appropriate to focus on self management when a patient was in shock and
anxiety during for example diagnosis and treatment to just difficulty in
envisaging what scenarios arose in their ongoing follow up care where
supporting self management would enhance the patient experience and
49
promote empowerment. Over the time of the workshops issues did emerge
where the skills became more obviously useful:



supporting a patient’s need to stop smoking, or reduce body weight in
preparation for breast reconstruction – where continued consultations
had failed to make any in- roads in to supporting lifestyle change
exploring motivations for harmful lifestyle behaviours with young people
exploring motivations and goals for enhancing adherence to important
ongoing medication programmes.
Participant evaluation of the workshops.
All participants were asked after each workshop to evaluate all aspects of the
workshop content, and their experience of this. Uniformly all aspects of the
workshops were rated good or very good, with the skills training with actors
being rated as mainly excellent by the majority of participants.
The experience in workshop 1 did however produce negative comments by
some:
“smaller groups when doing role play”
“understanding existing knowledge base of group and clinical
experience and starting from there. Would not recommend this
workshop based on Session 1”
It was during the skills practice that there was opportunity for the participants
to learn from each other and to have time to think around their practice and
where their patients could be empowered (through the communication
process) to understand their problems, and to be able to explore solutions
which could be tried out by them and supported by their professional.
Question – which part of the workshop did you find most effective? (from all
three workshops)
“working in threes and role play”
“skills training – practicing in small groups with reflection and comment
by others”
“role play – despite it being uncomfortable”
Completion of the PPiC questionnaires.
A total of 8 participants managed to get a number of their patients to complete
a questionnaire following the consultation, and would have received their
personal report prior to commencing the course. Total number of patients who
completed the questionnaire was 119.
The collated anonymous report from CFEP Surveys shows that mean group
percentage scores on both subscales – patient partnership, and confidence to
self manage were in the high range.
50
However, to date, no participants have submitted any post course
questionnaires there is therefore no evidence that the training has had any
effect on patient reported outcomes for this group of clinicians.
Post course one to one interviews were carried out with a small number of
participants 6-8 weeks after workshop 3 to find out how the course had
affected their practice. Some of their comments are as follows:
“ I enjoyed the workshop and feel it has really changed my practice already. I
think I am using far more open questions and I feel the patients are leaving
the consultation I hope feeling involved in their care and happy and I certainly
feel much more satisfied by the consultations” (GP)
“ after the course – different – am trying not to tell the patient what is right –
(particular issue is smoking behaviour –medication compliance) but to work
through and give them time to think that through themselves; doing a lot more
exploration of their own perceptions – how important they are for them”
(Oncologist and completed the Connected programme in 2009)
“after the course – made me take a step back and see my deficiencies see
the consultation as the patients consultation – seeing that the paternalistic
helping role of the HCP doesn’t dominate” (Clinical nurse specialist and
completed the Connected programme in 2005)
“I have got right back to my clinical work and in fact used the training on one
more patient – patients husband was quite impressed and thank me profusely
for spending time with her and persuading her to give up smoking” (Surgeon)
What have we learnt:






We are at an early stage of developing our practice around clinician
communication and enhancing self management with patients – and
that is despite what many clinicians may imagine they are currently
doing.
The need for a real culture change so that enhancing self
management with patients is the usual aspect of how we approach
and manage patient care.
With the increasing emphasis on secondary prevention and lifestyle
change following cancer treatment, there is a real need for the skills in
the PPiC course to be part of the usual repertoire of skills of all
clinicians.
The skill set which has been piloted in this training is not addressed in
the current Connected programme.
The use of the PROM – the Patient Partnership in Care questionnaire
needs to be reviewed, and the pre course scores compared to any
normative data from other clinician groups.
For clinicians who have completed a Connected programme –
especially within the last 5 years, there could be a ‘condensed’ form of
this course tested for feasibility, planned add on skills, and further
testing of the PPiC questionnaire.
51
Future Plans
A second stage pilot is in planning which will condense the course in to one
full day – incorporating the skills from workshops 2 and 3, for piloting with a
group of clinicians who will have recently completed the Connected
programme.
References:
Epstein R.M. Street R.L(2007) Patient Centred Communication in Cancer
Care. National Cancer Institute, U.S. Dept of Health and Human Sciences,
National Institutes of Health.
Powell R. Powell H. Baker L. Greco M.(2009) Patient Partnership in Care: A
new instrument for measuring patient-professional partnership in the
treatment of long term conditions. Journal of Management and Marketing in
Healthcare, Vol 2, No 4. 323-342
Street R.L. Makoul G. Arora N. K. Epstein R.M.(2009) How does
communication heal? Pathways linking clinician – patient communication to
health outcomes. Patient Education and Counseling, 74, 295-301
This workstream looked at the hospital system for patients in and post
treatment.
In the focus groups prior to the CARE project patients had mentioned the
requirement of a booklet of top tips that they felt would have been beneficial.
We worked with the focus group and also with Breast Friends to develop this
booklet. It gives patients and carers top tips on how to cope with treatment,
where to buy good prosthetic bras etc from and websites that the patients had
found beneficial. This booklet was professionally created and it is given to all
patients undergoing treatment for breast cancer at GHH.
Prior to the CARE project patients who had received chemotherapy and
radiotherapy treatment at GHH were invited to attend a post treatment group
led by the breast care nurses who discussed late effects of treatment,
lymphoedema, relationships etc. Breast Friends were also present at this post
treatment group to introduce the support group and give information. As part
of the CARE project this was opened up to all breast cancer patients to
52
ensure equity of service post treatment not just for those that had undergone
chemotherapy and radiotherapy.
As highlighted earlier in this report follow up was reduced from 5 years to 3
years. It is of interest to note that once oncological treatment is complete the
oncologists hand back all patients to the breast surgeons for follow up and do
not routinely see the patients unless required. Automatic systems were not in
place for mammograms to be requested and prior to reducing follow up the
mammogram request forms were completed in clinic at follow up
appointments. Now that follow up was not being done in years four and five
this is an issue as mammograms are still required. One of the Consultants
came up with a solution to this problem and the mammographic requests are
now completed 2 years in advance and the appointment system was altered
to allow for this.
Overlap of Service Use
A small number of patients used more than one service within the
programme. The totals of patients using more than one service and the
services that were used are below. The greatest overlap was between
Bridges and the MPCCN which is what you would expect as these are the
patients in active treatment with complex needs who also had issues around
transport to the hospital.
Bridges &
Own Health
Bridges &
HOPE
Bridges &
Specialist
Nurse
3
0
21
Own
Health
&
HOPE
Own Health &
Specialist
Nurse
HOPE &
Specialist
Nurse
2
7
0
Bridges & Own
Health & Specialist
Nurse
1
Challenges, barriers and enablers
The relationships between the various organisations have significantly
improved as a result of the testing due to individuals coming together and
working as one for the project and having a common goal.
The one organisation that we failed to involve from inception was that of
Breast Friends. They provide a significant amount of support. Spot purchasing
ironing, cleaning and child care for this group of patients which in some
aspects mirrors some of the services that Bridges Care could provide.
The learning from the testing we have been doing as part of the NCSI has
been far reaching. The CARE project has been presented locally within the
Trust and Nationally at NCSI events. As part of the project we had official
branding created by a design company to give a strong graphic presence on
all CARE documentation, presentations and posters.
The number of patients forecast and the number accessing the services on
offer were lower than expected and it would appear that there was a greater
amount of ineligible patients with metastatic disease.
53
There have been many barriers along the way and a great number of lessons
have been learnt but by far the strongest to have been broken is that of
enabling primary care, secondary care, the private sector and charities to
come together and work in partnership. The obvious difficulty with this is that
each organisation works in different ways and with different priorities and
agendas and enabling the seamless link between the various sectors has
been an achievement.
The most obvious challenge that has been overcome is that of change and
peoples resistance to this for varying reasons. A large amount of work went
into supporting individuals in being able to change practice in a safe and
controlled environment with a safety net to ensure that patients are not being
lost into a void. A significant amount of work had already been undetaken with
clinicians and relationships of trust had been built with the work the Cancer
Network had completed with HEFT to reduce the length of the inpatient stay
for breast cancer patients. This was of great benefit as the time to build
relationships of trust and the impact that has on testing is not to be
underestimated and the value of taking the time to build those relationships is
priceless.
An enabler for this project was being a national test site and the high level of
support and drive that came with this as well as the opportunity for each
organisation to be highlighted nationally and be a driver for change.
The funding for the project came from various sources. Most of the finances
were provided from NHS BEN with a significant amount being given from
Macmillan towards the Nurse Specialist role, the Bridges staff and the Own
Health staff. There were some national monies given that went towards the
appointment of a project administrator and towards the branding of the
project. Monies were also given from the Service Improvement budget at
PBCN as well as a SIF from PBCN to help lead on the project.
The workshops that were delivered by the NHS Improvement staff were very
valuable as this gave opportunity for all the test sites to come together,
network and share the successes, failures and difficulties with the projects
and to gain opinion and advice from people in similar situations. These also
enabled each project to inform future cancer policy.
As the project moved forward it grew in complexity and scale as a result of
necessary additions to the overall remit. These were not expected when the
project was initially scoped and if this project is repeated it would be better
managed as a programme of works.
Due to the changes in the economic climate, the changes at PCT level and
low numbers of referrals to both OwnHealth® Care and Bridges Care these
services are not progressing beyond the testing phase.
The MPCCN role sat within the provider arm of the PCT but due to the forth
coming reorganisation of the NHS this service is being vertically integrated
into HEFT and will be commissioned and sit within the Oncology service. The
HOPE course is being commissioned as part of the expert patient programme
at BEN and at present Macmillan are still helping with the initial set up and
running of this.
54
Appendix 1
OwnHealth® Care Patient Case Studies
The own health breast care nurses have been able to provide personalised
support to women with breast cancer. Regular planned telephone calls have
enabled the nurses to develop rapport with their patients and deliver
individualised telephone support. Effective, professional and empathic
interpersonal skills have been utilised throughout the consultations.
Relationship building clear direction and focused goals have been facilitated
during telephone contact. Anecdotally, case reviews of the care given, have
demonstrated that many women have reported feeling able to increase their
self efficacy; self manage co-morbidities and achieve personal goals
Women have been supported with further explanation of their Cancer
diagnosis, and the treatments given. It has become evident from evaluation of
the service that many of the patients have had problems with fatigue,
depression, body image together with co- morbidities. Enabling patients to
become more confident in seeking advice and utilising their own resources to
self manage co-morbidities has been a valuable part of the care and
survivorship service. The service has also identified the need to continually reevaluate when symptoms such as fatigue persist, to ensure a look at
differential diagnosis is considered. In this way the patient can be re-assured
when all the information is to hand, but essentially will be referred back to
primary care clinicians, consultants for review as appropriate.
Patients have completed 6monthly questionnaires for service evaluation.
Feedback gained from these has consistently demonstrated high satisfaction
with the care and support received from the breast care nurses. It has been a
recurring theme and remark that the service is valued and the patients feel
they can discuss their concerns with their care managers. Individual reviews
have demonstrated that patients have felt increasingly empowered to manage
their health in a holistic manner after contact with the own health care nurses.
Patient consent has been obtained for each of the stories; names of patients
have been changed to ensure confidentiality and anonymity.
Patient 1 (Agnes)
Clinical Details
Grade 2 invasive node negative carcinoma of the L breast diagnosed 2007.
Referred to Own Health Care ® on 06/05/10.
55
Treatment Details
Left wide local excision and auxiliary node clearance followed by radiotherapy
and Arimidex.
Personal Details
81 year old lady who lives with her husband in her own home, both are self
caring with no social services input. No family, but part of a wider extended
family.
PMH
Non insulin dependant diabetic
Arthritis
Survivorship Interventions
The first time I telephoned Agnes to carry out her initial assessment she told
me she had had a serious fall the previous week, which resulted in her being
stuck in her bathroom for 3 hours.
She sustained no injuries, but she attributed the fall to her having a diabetic
hypoglycemic episode. This event had caused a great deal of worry to herself
and her husband, resulting in Agnes not using the bathroom anymore.
I referred Agnes to the ‘Cross Roads Care, Moving, and Handling and Falls
Prevention service’ and commenced enquiring about a ‘Careline’ to be fitted in
her home. I also asked Agnes to attend her GP for a diabetic assessment as
soon as possible.
She was reviewed by a falls advisor who fitted grab rails in the bathroom, a
raised toilet seat and a standing stool for her to use in the bathroom and the
kitchen. The falls advisor also provided Agnes with a commode so she did not
have to walk to the bathroom during the night.
I sent Agnes the application form for a ‘Careline’ to be fitted, which she
applied for and was fitted, both Agnes and her husband are now confident to
use the bathroom again.
Agnes underwent a full diabetic review with her GP and her diabetic
medication was altered. She is now under regular review with her Practice
nurse.
On further assessment I found that Agnes had a knowledge gap around her
diagnosis and was unsure as to what cancer was, during our next couple of
telephone calls we built on her existing knowledge base and worked through
the basic pathology of breast cancer.
56
She was also unsure as to why she had been prescribed endocrine therapy
so we have looked at this in detail.
Agnes does not smoke or drink alcohol, her BMI is slightly raised, but due to
her arthritis exercise is not applicable in her. Currently we are working
towards her eating five portions of fruit and vegetables a day.
She scored low on the distress thermometer.
Since joining the survivorship programme Agnes has not had any admissions
to hospital. She has had one GP appointment. Agnes is aware of her next
mammogram appointment and follow up.
Agnes stated that she looks forward to my calls as she has someone to ask
questions about her breast cancer, she has been able to discuss issues with
me that she feels unable to talk about with her husband. She also stated that
she feels more in control of her healthcare needs.
Patient 2 (Lucy)
Clinical Details
Left breast DCIS (Ductal Carcinoma in situ). Diagnosed December 2008.
Referred to OwnHealth Care® on 26th March 2010.
Treatment Details
Left mastectomy with LD flap reconstruction. No chemotherapy or
radiotherapy and no endocrine therapy.
Personal Details
A 56 year old lady who lives with her husband in their own home. She helps to
run the family business and has caring responsibilities for her mother, father
and mother in law. She also has a disabled grandson.
Past Medical History
None
Survivorship Interventions
57
During Lucy’s initial assessment we identified her lack of understanding as to
the national treatment guidelines for DCIS. We re-visited the reasons why she
needed a mastectomy. Lucy suffered delayed healing and infections following
her reconstruction which have left her very tired and generally low in mood
and she was struggling to cope with her altered her body image.
Lucy scored highly on depression screening, and after further questioning had
not been taking her anti depressants as prescribed.
I wrote to her Consultant and GP to inform them of this and asked Lucy to visit
her GP.
Lucy visited her GP and is now conforming to taking her anti-depressants
daily and has had a marked increase on depression screening. I repeat her
depression screening once a month and Lucy is contemplating attending a
counselor which her GP has arranged.
Lucy is a smoker and has a higher than normal BMI, she drinks alcohol
infrequently, and has taken no exercise since her surgery; previously she had
been a regular swimmer. Lucy is a keen cook and always eats five portions of
fruit and vegetables a day.
Lucy has now stopped smoking and I continue to provide positive
reassurance and support in this area. We are working together to find suitable
swimwear for her to feel more confident to return to swimming. However her
caring responsibilities have made finding time to swim difficult.
I have encouraged Lucy to investigate respite care for her mother in law, and
Lucy has now booked a holiday.
Since joining the survivorship programme Lucy has had no hospital
admissions and one GP appointment. She is aware of her next mammogram
appointment and follow-up.
Lucy has thanked me for giving her time to discuss issues she feels unable to
discuss with her immediate family.
Patient 3 (Esme)
Clinical Details
Grade 2, invasive, lymph node negative carcinoma of the left breast,
diagnosed in August 2009.
Referred to OwnHealth® CARE on the 9th April 2010.
58
Treatment Details
Left mastectomy and axillary node clearance followed by hormone treatment
with Arimidex.
Esme had many complications following surgery and was admitted to hospital
on recurrent occasions with wound infections, one of these resulting in an
admission to the intensive care unit. Esme had an additional admission to
hospital with a foot infection related to her diabetes.
Personal Details
80 year old lady, lives alone in a warden controlled housing complex (she
owns the flat). She is self caring with all personal activities of daily living but
requires assistance with housework, shopping and mobility. She has a
daughter and grandchildren who live locally. She has two other children whom
live away and contact is very limited.
Past medical history
Insulin dependent diabetes
Lymphoedema
On warfarin for previous DVT
Underactive thyroid
Survivorship interventions
Throughout the time I have been providing support to Esme I have been able
to help her in a variety of ways.
Esme’s mobility is limited; she requires the use of a walking frame for
mobilising around her flat. She is only able to leave the house once a week
when her daughter takes her shopping, for this she requires a wheelchair.
On carrying out Esme’s initial assessment I noted that she takes warfarin for a
previous DVT but was not having her INR checked. This was due to the fact
Esme could not attend the hospital anticoagulation clinic appointments. I
offered to organise hospital transport for Esme however she stressed how
distressing she would find this due to her lack of mobility and independence.
Therefore in order to ensure the INR was controlled and that Esme received
optimum care I contacted the anticoagulation clinic and the GP surgery and
arranged for Esme to receive a phlebotomy service at home where they would
take her blood, send the yellow anticoagulation book to the hospital with the
blood sample and then post the dosed anticoagulation book back to Esme.
Esme really appreciated this intervention. Five months on her INR levels are
very well controlled. Consequently Esme has not had to attend the hospital or
GP surgery regarding this since.
Another intervention I have activated for Esme was a referral to ‘Bridges’ for
help with domestic tasks. Bridges provide a volunteer for an hour three
mornings a week. Esme stated what a difference this has made to her life, the
59
volunteer is able to complete the heavier domestic tasks such as mopping
floors and vacuuming that Esme is now unable to do.
Recently it became apparent to me that Esme’s diabetes appeared to lack
control. She was experiencing symptoms of unsteadiness, extreme thirst and
frequency of micturation. I asked Esme to document her blood sugars for a
week morning and evening in order for me to review the pattern. They proved
to be very high, ranging from 15.0-19.0 in the morning and around 25.0 in the
evening. I asked Esme who was monitoring her diabetes and she stated that
she does not have regular checks, she had not instigated anything as she
thought they would ask her to go to the surgery which she cannot do at
present.
Therefore I contacted the practice nurse at the GP surgery for advice. The
practice nurse is also a diabetic specialist nurse and therefore is able to alter
the doses of insulin and then report her actions back to Esme’s GP. Following
an initial discussion with the practice nurse we decided to commence
collaborative working whereby I continue to speak to Esme, record her blood
sugars then report into the practice nurse who then advises me what to tell
Esme to do regarding the doses of insulin.
Following the first week of intervention there was a notable improvement in
Esme’s blood sugars and general health. She reported she felt much less
unsteady and the frequency of micturation had rectified. However she
continues to have extreme thirst and her blood sugars are not yet within an
acceptable range. As a team we have therefore decided to add in support
from the community diabetic team if the blood sugars do not rectify
themselves over the next week.
Another area of concern for Esme is her financial situation. She received a
large bill for windows that were fitted whist she was in hospital. Esme has
been really distressed over this as she is unable to pay the bill, if she paid it in
instalments she would not be left with any money at the end of each month.
Therefore I introduced the idea of applying for a grant from ‘Macmillan’ and
‘The Cancer Recovery Foundation’. I have recently received conformation that
Esme will receive £300 from ‘The Cancer Recovery Foundation’ (this is the
maximum amount they can provide) and am awaiting conformation from
Macmillan. Esme was thrilled with the £300, she was very emotional when I
called her to inform her of the good news.
In addition to these interventions I regularly provide Esme with support
regarding anxiety, fatigue and lymphoedema. Esme has lymphoedema in her
left arm and both her legs. She is regularly reviewed by a community
lymphoedema nurse.
I have arranged for GP home visits when required as Esme is hard of hearing.
These visits have been arranged for medication reviews, review of feet
(following admission for foot infection) and a diabetic review. I have arranged
three visits since I have been supporting Esme.
60
Esme has required one hospital admission since I commenced supporting her
following a fall she had in the bathroom. Unfortunately Esme did not have her
emergency cord around her neck at the time.
As regards education, I have been able to explain Esme’s diagnosis to her as
well as the reasons for her being prescribed Arimidex and the potential side
effects that may result. Esme’s knowledge of lymphoedema is generally good
due to the continued support from her lymphoedema nurse; I have added to
Esme’s knowledge concerning this.
As regards lifestyle factors, Esme’s main issue is around her diabetic diet.
Due to the recent concern regarding Esme’s diabetes it came to light that
Esme’s knowledge of what a diabetic diet should consist of is relatively poor. I
have therefore been able to educate her in how to change her diet in order to
help with lowering and maintaining her blood sugars. To support this I have
posted Esme information regarding diabetic diet from the ‘Diabetes UK’
website.
Since enrolling to the OwnHealth® CARE programme Esme has commented
how my support has helped her through providing her with knowledge, access
to appropriate services, ensuring where possible to keep her at home as
independent as possible and most importantly as someone to confide and
obtain emotional support from.
Patient 4 (Rachel)
Clinical details
Grade 3, invasive, lymph node positive carcinoma of the right breast
diagnosed June 2009.
Referred to OwnHealth® CARE service 9th March 2010.
Treatment details
Right mastectomy and axillary node clearance, chemotherapy with Epirubicin
and CMF and radiotherapy. Hormone treatment with Arimidex initiated.
Personal details
Rachel is a widow; she lives in a flat with her teenage son. She cares for her
disabled mother in law. Rachel is fully independent with all activities of daily
living, although this is slightly restricted due to arthritis. Rachel is unable to
work at present due to recovering from treatment in addition to suffering with
depression and uncontrolled rheumatoid arthritis.
Past medical history
61
Rheumatoid arthritis
Psoriatic arthritis
Depression
Survivorship interventions
The initial intervention with Rachel involved discussing symptoms relating to
the Arimidex. Rachel and I concluded that the Arimidex was contributing to
the reduced control and increased pain related to her arthritis. This was in turn
deepening her depression. Therefore I arranged for her to see the consultant
in the breast unit at the hospital. The consultant took the action to change her
hormone treatment to Tamoxifen. Rachel had previous reservations relating to
this as her mother took Tamoxifen and it did not work for her. Myself and the
consultant were able to reassure Rachel regarding this to enable her to make
an informed decision.
Following this change of hormone treatment Rachel’s arthritis is better
controlled.
Rachel’s depression is a concern; she is on medication for this but does not
wish to be referred for formal counselling at present. She states she finds it
helpful talking through issues with myself, I have informed Rachel that if she
changes her mind regarding counselling I would arrange a referral.
Rachel regularly talks to me about her past and the worries and concerns that
she has. From this I have been able to offer reassurance and a listening ear.
She has multiple psychological morbidities and needs to work through these
in her own time.
Rachel aims to get back into employment once she is in a better place
psychologically and physically. I talked to her about various options as she
wants to try something new. I introduced the idea of the local centre for
voluntary action. We discussed the options in relation to voluntary work and
that this could lead to getting back into pain employment.
Rachel had concerns relating to the fear of recurrence, I have been able to
explain her diagnosis to her in detail, putting the risk of recurrence into
perspective and relating this to what to monitor for and education relating to
breast awareness.
Rachel was experiencing long term side effects from the chemotherapy
including alterations in taste. I was able to provide advice regarding how to
cope with this symptom along with reassurance that it will get better. This
symptom has now improved and Rachel has been able to introduce the
advice given into her daily life.
In relation to Rachel’s arthritis, she had not been reviewed by the
rheumatologist since her breast cancer diagnosis and was not on any active
treatment. I therefore encouraged Rachel to arrange an appointment. This
62
tool a while as she was unable to contact the rheumatology nurse, therefore I
did have to intervene. She was reviewed but no active treatment commenced
as they did not want to start anything whilst she is taking Tamoxifen.
Rachel often discusses how lonely she is and we have begun discussions
around taking a holiday by herself and methods of her meeting new people.
Rachel is due for her surgical follow-up appointment imminently; recently she
has described discomfort around her mastectomy scar. I explained this could
be nerve pain due to the healing process but to ensure it is assessed by the
consultant. I have also informed the breast care nurses at the hospital of my
concern.
As regards lifestyle, Rachel has recently decided to take action and begin the
process of stopping smoking. She has enrolled on a programme at her GP
surgery and taken control of the process in her own mind.
Rachel has not had any hospital admissions since enrolling to the
programme. She has visited the GP on a couple of occasions for a medication
review and as a result of a tooth infection. She has reinstated her
rheumatology appointments.
Since enrolling to the OwnHealth CARE programme, Rachel has stated that it
has enabled her to be able to talk openly to someone about her concerns and
that it has enabled her to feel empowered to make the decision to stop
smoking.
Patient 5 Laura
Clinical details
Grade 2, invasive, lymph node positive, diagnosed May 2009
Treatment details
Mastectomy and Axillary node clearance, Chemotherapy, Epirubicin,
Taxotere, CMF, Radiotherapy and Arimidex
Personal details
Age: 57,
Immediately post treatment.
Past Medical history
Fibromyalgia
Labrynthitis
Survivorship Interventions
Initially we discussed Laura’s diagnosis, treatment and possible long term
side effects. Thus ensuring that she was fully informed of her condition and
knew when, how and who to call for help.
63
Laura scored quite highly on the depression scale at her initial assessment.
We agreed that she would see the GP to discuss this and it was decided that
at that time she would not go for counselling. We were able to talk through
this, and she discovered that she needed more time to herself, and to have a
more open dialogue with her family about how she was feeling and what she
needed. On the strength of this Laura felt able to discuss her feelings more
openly with her family. She also negotiated time to herself.
Laura has some family issues and through our discussions she has felt able
to manage these. I was able to inform her about the Cancer support centre.
She has found this very helpful to take time for her and relax. Also, it has
been useful that the staff there are knowledgeable about her condition and
therefore she feels comfortable. Laura stated that this intervention had been
really helpful and she has continued to use the service.
In relation to the issues of stress and depression Laura has stated that she
has found the anonymity of the service very useful. Her recent repeat
depression screening was negative.
Laura has suffered from dizziness, possibly labrynthitis for many years.
During our talks it came to light that she was not taking her medication
regularly. This was encouraged and Laura decided to take control and
manage this condition. Following an admission to hospital in May the
condition has improved due to increased self management.
Fatigue was a big problem and we have been able to discuss this. Fatigue
can be an all encompassing feeling of tiredness as a side effect from
chemotherapy and radiotherapy. It can be quite disabling, affecting all
activities of daily living. There are therefore far reaching emotional,
psychological social implications of this in addition to the physical effects.
Laura also suffers from fibromyalgia which causes fatigue and to begin with
Laura was depressed. Depression can cause fatigue and a debilitating
weariness. It was important to differentiate these causes and ensure that all
aspects were dealt with and signposted appropriately to other services. As a
result of our talks Laura has now organised planned rest intervals
interspersed with activity, is ensuring good sleep patterns by avoiding caffeine
and other stimulants before going to bed, and is asking for help from her
family.
Fibromyalgia has also been a problem for many years and we were able to
talk through the consequences of this with regard to fatigue as above and
again ensure a more regular analgesia regime to control the condition.
Regular analgesia to control the pain from fibromyalgia has improved the
quality of her life considerably.
Laura and her sister also assist her father in caring for her Mother. I have
been able to support her in this and inform her of the services to which she is
entitled. Social services are now involved.
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I have also been able to inform Laura about the risk to her family of Breast
Cancer. She was very concerned about this and I was able to send on the
appropriate forms to her to ensure that her daughters were considered for
family history testing. She was very grateful for this.
Episodes of swelling of her arm occurred during the course of our
discussions. I was able to reassure her about this, instigate returning to her
post surgery arm exercises and get it assessed. Therefore further
deterioration into lymphoedema was avoided and the swelling resolved.
Lymphoedema is a common side effect from breast surgery, especially
surgery involving axillary lymph node removal. The removal of these nodes
reduces the functioning of the lymphatic system in that area. The lymphatic
system provides the drainage system for the blood vessels. Therefore, if this
is compromised, the arm can begin to swell. This can become a chronic
condition if left untreated, even resulting in toughened skin and permanent
deformity.
When we were first discussing returning to work Laura was not sure that she
wanted to resume employment. However through our discussions Laura felt
empowered to talk to her manager regarding an appropriate return to work
package. She has negotiated a graduated return to work including a new role
and working from home. Her employers have been very supportive and I also
feel that I have been able to support Laura in this.
Laura has also felt empowered to ask for annual MRI investigations to reduce
her anxiety and is considering risk reduction surgery. I have been able to
discuss this decision with her and assist her to make the most of her hospital
appointment by taking notes and ensuring she has the support of a friend.
Laura has also been able to talk this through with her husband.
In conclusion, Laura joined the service feeling depressed, stressed and tired.
We were able to work through these issues for Laura to make an informed
decision about counselling. We also worked through some family issues
enabling her to be more open about her feelings and needs. This more open
situation and the realisation that she needed time to herself have allowed her
to resolve the issues. Her family life is now easier and she gets regular “me
time” to relax. The depression has been resolved in this way. We were able to
tease out the causes of her fatigue and deal with them appropriately and
Laura has taken control of her dizziness and fibromyalgia. She is organising
help with her caring responsibilities, and has been able to take action
regarding her fears for her daughter. We have avoided lymphoedema and
Laura has had a well planned graduated return to employment from
sympathetic employers. We have ensured that she is fully informed regarding
her diagnosis, treatment and long term side effects and she has negotiated
investigations to allay her fears. She is now making informed decisions about
her future care. Laura is now in control of her life and has put in place
appropriate support networks.
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Patient 6 Sarah
Clinical Details
Grade 3, invasive, lymph node positive, left breast, diagnosed May 2009
Treatment details
Mastectomy and Axillary node clearance, Chemotherapy, Epirubicin,
Taxotere, CMF, Radiotherapy and Arimidex
Personal details
Age: 53.
Immediately post treatment.
Past Medical history
Hypertension
Survivorship Interventions
When we first began our telephone appointment Sarah’s annual surgical
appointment had not been arranged and I was able to enquire about this and
arrange her appointment with the surgeon and a mammogram. Sarah was
very pleased to have this assistance. We discussed her diagnosis and
increased the awareness of her condition, what to look out for and where to
go with any problems.
Sarah’s fatigue as a consequence of chemotherapy was an issue at the start
of our calls. We talked about planned rest, and alternating activity and rest.
We also talked about gradually increasing her activity level which is known to
help with fatigue. Using achievable, measurable targets Sarah has
significantly increased the level of activity she can perform. She has now
reached a personal target of walking up a long steep hill with no ill effects.
This was not possible at the start of our programme. Sarah’s fatigue has also
improved along with this. Within the duration of our appointments Sarah has
returned to work gradually, taking into account her energy levels, and I feel
this has raised her confidence. I have been able to support her with this
process.
Sarah had been experiencing increasing pins and needles in the hand on the
opposite side to her operation. It was disrupting her sleep, therefore
increasing her fatigue, and affecting her ability to perform everyday tasks, e.g.
peeling potatoes. I was able to advice regarding the long term side effects of
chemotherapy and Arimidex. Pins and needles are a known side effect of
chemotherapy but these had not been present during or immediately after her
chemotherapy. We discussed the possibility of carpel tunnel syndrome which
can be a condition in itself, or may be a side effect of Arimidex (a drug she is
taking). We also considered the possibility of a nerve problem in her neck as
the cause of the pins and needles. She therefore sought advice from her GP
and when the treatment suggested (ibuprofen) did not work she felt able, with
support, to seek advice from her Surgeon. The surgeon was able to reassure
Sarah that this was not due to her medication and that it should be monitored
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by the GP. Sarah is now under the care of the GP regarding this problem and
will get the appropriate care to improve her quality of life.
Lymphoedema, as described in the previous case study, has been a problem
and we have discussed preventative and management strategies including
attending appointments with the lymphoedema service. This is now stable and
Sarah accepts this as part of her life.
At her initial assessment Sarah was overweight, her BMI was 37.7. She has
now lost a stone in weight by joining a slimming club, following our
discussions, and is losing weight steadily. This has increased her feeling of
well being and her confidence. She has also now felt confident enough to
have her newly grown hair, following chemotherapy, cut dyed and styled
which has made her feel “younger” and more able to socialise and move on
with life.
In conclusion, Sarah has moved on considerably with her life. We have
ensured that she is fully informed regarding her diagnosis, treatment and long
term side effects. She is now empowered to manage her symptoms of fatigue,
lymphoedema and pins and needles. She is conscious of the follow up
needed. She has returned to employment and has taken steps to reduce
future health risks by losing weight. Her self esteem has also returned and
she now has a more positive view of her body image. She has now developed
her “new normal” following her illness and is fully engaged in her life after
cancer.
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Appendix 2
MPCN Case study 1
Melanie is a patient known to the MPCCN service. Following a Cycle of
Taxotere chemotherapy Melanie had not been feeling well and contacted me
for advice. I arranged to visit Melanie at home that morning. On assessment
Melanie reported the following symptoms; Hoarse voice, difficulty swallowing,
productive cough, yellow sputum, chest tenderness. Vital signs were Temp
36.7 (although Melanie had been taking regular paracetamol for the joint
pains caused by the chemotherapy); BP 156/97; P 84; Sa02 97%. Melanie
was very tearful throughout the visit, it was her Grandsons 1st birthday
coming up and Melanie couldn’t face the thought of not being well enough to
celebrate it with the family. Melanie felt both physically and emotionally
exhausted by the chemotherapy and not sure she could continue if it was
going to make her feel so ill.
Melanie understood the significance of infection whilst on taxotere but felt
that being admitted to hospital would be the final straw and that she wouldn’t
be able to cope.
Together we devised a plan of care which included documenting the action
Melanie would need to take if her condition deteriorated and why these
actions were necessary. I took peripheral bloods directly to Good Hope which
demonstrated neutropaenia. After discussion with Dr Stevens, (Melanie’s
oncologist) it was agreed that Melanie could be treated at home with oral
antibiotics if I was able to review her daily and her temperature did not exceed
38. I visited Melanie daily for 3 days this provided not only a daily clinical
assessment whilst neutropaenic but also emotional support when it was most
needed.
Melanie’s symptoms improved and she did not have to be admitted.
Although Melanie was not well enough to attend her Grandson Birthday party
due to the neutropaenia, she was able to have a small family party with him at
home.
Melanie went on to complete her chemotherapy. There were a total of 12
home visits; and 6 telephone support calls. I referred Melanie to the following
organisations; Macmillan CAB; Bridges (transport) Macmillan Lymphoedema
service.
MPCCN Case Study 2
Jane is currently being treated at GHH for breast cancer; she has been under
my care for 4 months since commencing adjuvant Epirubicin/CMF
chemotherapy. Jane contacted me as she had been feeling unwell since
returning from a holiday. The main symptoms were a heavy cold, new onset
of a productive chesty cough, fatigue, Temperature of 37.5. Jane was on day
17 of her 2nd cycle of CMF so within the nadir period and potentially immuno68
suppressed. I visited Jane at home to assess if urgent admission was
required.
On assessment Jane looked pale and tired but had been into work that
morning. Her vital signs were BP 135/89 Temp 37.5, Pulse 95 Oxygen
saturations 96%. Jane had a productive cough, expectorating Green sputum. I
listened to Jane’s chest she had a pronounced wheeze in both left and right
upper lobes, and crackles on the left base. I took peripheral blood tests to
assess for neutropaenia. I explained the reasons for the blood test. Jane had
a good understanding of the seriousness of neutropaenia but had not sought
advice before as she had been on holiday and her temperature had not gone
over 38.
I contacted Jane’s GP for urgent review who was happy to prescribe
oral anti-biotics as long as Jane’s blood count was normal.
I took Jane’s bloods to Good hope for urgent analysis and on this
occasion she was not neutropaenic therefore in patient admission was not
necessary. All of the above was documented on a care plan including advice
on any future action Jane would need to take if her symptoms did not
improve.
Jane was assessed and treated in her own home within 2 hours. I
discussed Jane’s case with the Oncology Nurse Specialist who advised that
as there were no Doctors available on the unit on that day they would have
had no choice but to admit Jane via AMU or A&E because of the potential risk
of neutropaenia.
The outcome of this intervention was that Jane’s symptoms were
expertly managed at home which prevented her attending secondary care.
Jane was enormously relieved not to have to go into hospital and very grateful
for this support.
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