Cancer Services in Colchester:A Study of Patient & Carer Experience

Dr Oonagh Corrigan

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.

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).

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.

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)

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)

 

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)

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.

Interviews

Some examples of poor care:

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)

Communication

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)

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.

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).

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.

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.

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