The document summarizes a study on patient and carer experiences with cancer services at a Trust in Colchester. Key findings from surveys and interviews included both positive experiences with excellent care from some staff, as well as negative experiences where communication failures led to patients and carers feeling their concerns were not listened to. The study recommended improving communication between healthcare professionals and patients, ensuring patient views are listened to and responded to, and continued support for cancer support groups.

1. Cancer Services in Colchester:
A Study of Patient & Carer Experience
Dr Oonagh Corrigan

2. Background
• Problems with some cancer services at the Trust were first raised
following a tip-off from a hospital staff whistle-blower which prompted a
CQC investigation.
• The CQC’s subsequent identified a number of problems with cancer
services at the Trust, including not having ‘adequate systems to maintain
the safety and welfare of people receiving treatment on the cancer
pathway’ and not having ‘sufficient arrangements to promote effective
performance of the cancer service’.
• It was agreed by the Trust and other members of the especially convened
Incident Management Team, that Healthwatch Essex would undertake a
piece of qualitative research to explore patients’ lived experiences of
cancer services at Colchester.

3. Study Design
•Methodology
Our overall approach was to access the ‘lived experience’
of care and treatment by obtaining in-depth narrative
accounts from patients and carers about their experience
of cancer services in Colchester.
Methods
•Survey directed at patients and carers
• 173 people responded, 91 provided free text responses
• Focus group interviews with 3 local cancer patient support
groups.
• In-depth one to one interviews with a sub-sample -16
respondents (8 carers & 8 patients).

4. Findings: Survey
• 68% Satisfied with care
• 74 % Satisfied with Treatment
However However, these figures should be treated
with some caution. Those who gave good satisfaction
ratings often reported some aspects of care that
were poor, but where clinical outcomes for those
patients were good, poor care were more easily
overlooked.

5. Findings: Survey
• Qualitative answers provided rich contextual illustrations of ‘lived experiences’
of care.
• The care at the Cancer Ward at the old Essex [County] Hospital was superb and my
late wife always felt safe there. However the care at Colchester [General]
Hospital was abysmal. Apart from a couple of really caring nurses, the staff were,
or seemed to be, totally disinterested, they lacked any sort of empathy or
understanding of the pain their patients might be suffering and, worse, they did
not seem to want to put themselves out to administer the painkilling drugs.
(Husband of deceased lung cancer patient)
• He and his team of nurses and radio-therapy staff treated me with dignity and
compassion at all times, and made myself and my wife feel that we were members
of a team working to a common goal. (Patient with multiple types of cancer,
survey)

6. Focus Group Findings: Cancer Support
Groups
• There were numerous benefits reported for those
who regularly attended cancer support groups.
• Support received from the group was of a different
nature to the support and information received more
directly from the hospital.
• Good to meet with others face-to-face to share
experiences and information:
All the leaflets you can read, you can read forever, on
the internet, anywhere, but it’s not the same as
seeing somebody sitting there. (Patient, Lymphoma
FG)

7. Findings Cancer Support Groups
Cancer Nurse Specialist
we could phone her up at any time. (Patient, Lymphoma FG)
… instead of worrying about it, you can ring and find out. That’s
the thing; there is always someone at the end of the phone.
(Patient, Urology FG)
Monica had gone that extra mile. When I sent the email, it
could have sat in her inbox, I didn’t know how busy she was,
but she looked, she knew this patient was anxious. She also
knew the results, she knew they were good and contacted the
patient on the phone to make sure she knew they were good as
well. That is brilliant service. It’s not necessary but, my word,
it makes a difference. (Patient, GI FG)

8. The Role of Carers
Carers play a key role in providing care, advocacy and
support to patients and are often highly valued by
patients, but many reported feeling too easily dismissed by
staff when they raised concerns and were not always part
of the communication process regarding treatment
decisions.

9. Interviews
Some examples of poor care:

10. Excellent Care too…
He’d come and sit on the bed, and perhaps
squeeze my hand, and say, “you’re doing
really well, keep fighting”, just words like
that. I can’t explain the difference that
made; it made you feel like you were a
person rather than just someone in a bed. It
made a world of difference; he would come
and see me occasionally as well, and basically
reassure me to keep fighting… it was just a
caring attitude. (Gary, lower GI cancer
patient)

11. Communication

12. Being Listened to
Respondents detailed how, when they did
express views, staff could appear disinterested
and only had very limited time to actually
listen:
The clerical support staff let the service down
by not listening to me as the cancer grew and
grew until it was touch and go if it would be
possible to cut it out. (102, Skin cancer
patient, survey)
Some of the junior doctors were very helpful
but, with exception of one or two nurses, I
couldn’t find anyone that was even vaguely
interested in my and, more importantly, my
wife’s views. (120, carer of lung cancer
patient, survey, interviewed)

13. Key Findings:
Many of our respondents reported feeling that
protocol, process and paperwork appeared to
take precedence over basic patient care.
Failures in communication included instances of
physician insensitivity with regards to breaking
bad news, shared decision-making, and listening
to patients.
Some patients and carers felt that their concerns
were often not listened to and that there was a
defensive culture when a complaint was raised.

14. Key Findings: Communication
• The need to improve communication is a key
finding.
• Studies show that effective communication
between healthcare professionals and their
patients not only improves the patient
experience, in terms of improved patient
understanding and trust, but it is also linked
to better clinical outcomes for patients
(Arora 2003; Epstein & Street 2007; Street et
al 2009).

15. Reccommendations
1. More effective ways of ensuring that patients’ and carers’ views
and experiences are listened and responded to.
2. Communication must be made more effective at all levels and by
all healthcare professionals.
3. Qualitative methods in research, and ongoing evaluation, should
be adopted so as to better understand patients’ and carers’
experiences and to support continuing quality improvement
programmes.
4. Support for and engagement with existing cancer support groups
should be maintained, and the formation of new groups for
cancer types not already represented should be encouraged and
facilitated.
5. Continued professional development training opportunities in
ethics, for staff at the Trust and elsewhere in the Colchester
area, should be provided.

16. Follow Up
Since the Report was published in October 2014 we have received
formal responses from the Trust who have acted upon a number
of our recommendations including:
• the provision of training and Formal Education and Training
opportunities in ethics to improve Communication
• Support for new Cancer Support Group and the development of
User Engagement with existing cancer support groups.
• The development of further Qualitative research programmes
to better understand patients and carers lived experiences with
the aim of supporting clinical teams to further develop quality
improvement programmes.

17. To access a copy of the Report please visit our webpage
http://www.healthwatchessex.org.uk/what-we-do/topics/cancer-services-in-colc