Report for the North of England Cancer Network, on the Macmillan Durham Cachexia Pack, Awareness Raising Workshops 2010.

The Macmillan Durham Cachexia Pack (MDCP) was introduced at a national conference in Durham in November 2007. Macmillan Cancer Support disseminated this resource throughout the UK via lead cancer nurses in organizations and it was made available to download from their website.[1] Locally the use of the MDCP was chosen by the NECN as their audit for 2008/2009 and the results were presented at the annual conference September 2009. The results highlighted sporadic awareness and use of the pack within the network region. In response to this, the NECN supportive and palliative care meeting facilitated the Durham Cachexia Team (Dr. Colette Hawkins and Inga Andrew) to provide a series of workshops to raise awareness of the MDCP.[2] These workshops were planned at 3 different venues to give equity of access for all healthcare professionals (HCP) within the network and advertised accordingly. (Appendix 1)

The workshops took place in September/October 2010, firstly at Education Centre, James Cook University Hospital, Middlesbrough: 22 booked, 18 attendees, next at Peacock Hall, Boardroom, RVI, Newcastle: 21 booked, 17 attendees and finally at Greenhill’s Hotel, Wigton, Cumbria: 12 booked, 11 attendees

Overall, 46 HCP attended the 3 sessions (9 DNA). The majority of participants were nursing staff however a wide range of HCP and allied staff were represented

Figure 1

There was a good representation of participants from various care settings, the most common being hospital.

Figure 2

Each session followed a similar format, beginning with a short DVD highlighting the major issues associated with ACS and the need to tackle these. Participants were then split into groups to discuss and share experiences of caring for this patient group. Four questions were tackled and in general, similar themes emerged and were fed back at each venue

1.  What is your experience of this patient group and how do you feel approaching them?

Participants reported a feeling of helplessness and hopelessness when approaching this patients group and generally suggested that they found ACS difficult and challenging. The large patient numbers added to the frustrations, as did the issue of conflicting information. HCP found patients with ACS often had conflicting information around diet, exercise, medication etc. However several HCP reported feeling positive when approaching this group. A small number felt happy to raise the issue of ACS, feeling comfortable to approach it, seeing it as part of their role and welcoming discussions with patients.

2.  What is the experience like for patients and carers?

Participants felt that ACS was a huge change for patients to adapt to, affecting all aspects of life particularly body image. A strong theme that emerged was the frustration, powerlessness and conflict that patients report. HCP talked about the fact that patients felt under pressure to engage with the subject when many would rather be left alone. HCP reported patients feeling depressed but often this depended on their pre-morbid personality. And finally several HCP reported patients who’d expressed concerns to them regarding conflicting advice they’d received about their symptoms of ACS.

The overwhelming themes that were reported around carers were those of conflict, friction and tension. HCP reported carers feeling responsible and anxious, with the issues of ACS being their biggest or main concern (in contrast to patients wanting to be left alone,) often feeling disappointed with situations eg: preparing a meal that is hardly touched by the patient. Family dynamics and collusion were also reported repeatedly

3.  What sort of symptoms do you associate with ACS?

The symptoms reported by participants are listed in the tables below

Figure 5

Physical Symptoms of ACS
Dry mouth
Nausea +/- Vomiting
Altered taste
Loss of appetite / no interest in food
Oral candida
Early satiety
Constipation
Fatigue
Lethargy / weakness
Depression
Pain
Weight loss

Figure 6

Associated symptoms of ACS
Loss of identity
Problems preparing food
Social situation
Problems with the definition of ACS

4.  How do you find managing their symptoms?

Participants reported “sharing difficulties” as a useful way of tackling patients’ symptoms, giving patients ownership and ensuring that their agenda is addressed. HCP reported the fact that patients appreciated support to cope with their symptoms and to change their expectations. An emerging theme was the fact that patients found information and education useful, on how best to manage the symptoms simply eg: smaller portions. Within hospitals it was felt that practical solutions such as “the red tray scheme” were helpful although these awareness raising sessions highlighted the vast differences in services available to patients depending on care setting and location. Participants felt comfortable suggesting medications for certain symptoms eg: dexamethasone for loss of appetite, and non-pharmacological advice for other symptoms eg: chewing gum for dry mouth. In terms of the psychological aspects of care, a couple of participants had found CBT useful in this group, whilst one participant extolled the virtues of a positive attitude with these patients.

The responses to these questions largely corresponded with what is reported in the literature and the Cachexia Team’s experience with the project in Durham.

A case presentation (see Appendix 3) was then given of a patient with ACS, who’d been involved in the baseline audit project in Durham.[3] After the patient and their symptoms were introduced, participants were split into groups again and given a practical “walk through” the MDCP with time for discussion and questions. The case presentation was then completed in light of familiarity with the MDCP.

Next a presentation of an overview of the evidence base[4] behind the pack and it’s impact[5] was given and conclusions drawn.

The final section of the session was completed in groups again, consolidating what had been discussed/seen already. Participants were asked to raise issues that they thought might be barriers/obstacles to use of the MDCP and also how they’d envisage the MDCP being used.

Barriers to use of the MDCP

Participants were honest and open about this topic. Many turned “barriers to use of the MDCP” into positives of how the MDCP could be used best.

The first theme that emerged was the fact that many patients expect to have ACS symptoms so the barrier is around changing the attitudes of patients and educating them that something can be done.

The next barrier raised by several participants from different acute hospitals was the lack of flexibility with catering. They felt the recommendations in the MDCP such as “eat little and often”, “eat what you want, when you want”, “eat favourite foods” were neither practical nor achievable in their organisations.

A strong theme that emerged was that of time constraints. It was felt that to complete the full assessment and apply each section of the pack to every patient with ACS would impact significantly on workload and not be practical. There was much discussion about applying the principles of the MDCP rather that having to follow the actual folder each time.

A repeatedly reported issue was that of whose responsibility it was to assess these patients for the symptoms of ACS. It was felt that this could be a barrier to implementation of the MDCP itself.

In each venue the issue of the number of assessment tools and resources that staff has to be familiar with, was raised. It was felt that being “just another tool” and not linked into any targets; CQUINs, QOF, QUIP etc. would not give it priority within organisations and therefore be a barrier to its use.

One participant felt that the medication recommendations in the MDCP reflected specialist practice and would be a barrier to its use. There was some discussion and a general consensus that the majority of the drugs, especially first-line drugs, would be comfortably and appropriately prescribed by non-palliative care doctors.

Several participants felt that the management strategies recommended in the MDCP were too late for many of the patients with ACS whom they saw. They felt that this lack of appropriateness to patients’ current condition would be a barrier to staff using the MDCP. Evidence from the research behind the pack was presented again, reinforcing the message that patients can feel better very quickly, even in the last few weeks of life.

There was discussion at each venue about the obstacle to implementation generated by conflicting opinions of the MDCP amongst HCP. Dietitians present at the sessions at JCUH and RVI expressed disappointment/concern regarding the dietetic section of the MDCP. When asked to be specific, the key issue related to the point at which a dietitian referral would be made, and the suggestion within the MDCP that non-dietitians offer first-line nutritional supplementation. The presenters welcomed feedback on this issue, as they were aware that differing views amongst HCPs were affecting the uptake of the pack. Two key messages came from this debate: firstly, that services are configured very differently across the NECN region. The infrastructure of dietetics within JCUH, for example, supports a totally different model of care from that within many community services (illustrated strongly by community nurses in Northumberland). Thus referral to dietetic services must be locally agreed and differences in use of dietetic services (and consequently empowering of non-dietitians to provide some advice and support where dietitians are much less accessible) are inevitable and necessary. The second message, linked closely with the first, was that the MDCP is specifically designed to be tailored and adapted to local need. The dietetic algorithm, for example, can be changed if dietitians locally wish to have all patients with ACS referred at diagnosis. However, this left the issue of ownership of the MDCP and responsibility for local adaptation. The presenters recommended that it would be valuable for HCPs to understand how their local services would wish to work and that the process of clarifying that would be useful information in itself.

Finally some participants felt that the cost implications of the MDCP, particularly the use of nutritional supplements would be a barrier to its use particularly within the community in the current financial climate. The principle of adapting the pack to local policy/preference/service configuration was emphasised.

Use of the MDCP

The overarching theme that emerged at each venue was that this was a useful tool to ensure a consistent approach, particularly for generalist staff. This was the original aim of the MDCP. Most staff in attendance were specialists or worked in a specialist care setting. They saw the main benefit of the MDCP being its use with; GPs, district nursing staff, nursing and residential home staff. Several suggested that awareness raising sessions amongst this cohort would be beneficial with a launch/advertising locally.

This led onto the next theme which was that of education and the fact that most participants felt the MDCP would be a resource they would use in education sessions for example at MDTs. One catering manager discussed its merits for education of catering staff and volunteers.

A theme linked to this was that of widening its use, particularly with carers. Several HCP reported how useful they thought the MDCP would be in educating carers and giving them tools/principles to use as well as tackling the difficult issue of conflict mentioned earlier, with them. One participant shared experience of a carers course that was run in their care setting and how they felt that aspects of the MDCP would add value to that. Another example suggested was its use in the Hospice Day-care setting. In terms of specialist staff using the MDCP, the sections participants repeatedly thought they would use were the assessment tool and patient information leaflets. Some HCP said they wouldn’t physically take the MDCP out with them to their consultation whereas others said they would, particularly to patients who were interested and keen for more knowledge.

The next theme came from the huge variety in access to related HCP eg: dietitians, and level of service from related departments eg: catering. Participants felt the MDCP was useful in that it could be amended to include organisational guidance to make it locally relevant eg: one acute hospital dietetic service wanted to see all its cancer patients as routine in contrast to one rural community which wanted generalist staff to employ basic strategies first before referral to a dietitian due to lack of access. HCP also felt amending the MDCP was useful to comply with local formularies eg: nutritional supplements.

The final theme was that of introducing the MDCP earlier in patients’ disease trajectory. Several participants felt it would be a useful tool to use shortly after diagnosis. For this to be employed in acute hospitals as routine, one participant felt that strategic personnel within organisations would need to be aware of it.

Conclusions

The Durham Cachexia Team concludes that the sessions were useful and certainly achieved their aim of raising awareness of the MDCP. From our experience of these sessions, within the NECN, it appears that the future of the MDCP lies as an educational tool for specialists to employ and a practical tool for generalists from all related professions, to dip in and out of.

List of attendees

Attendance list for NECN MDCP sessions 2010
Session / Name / Job Title / Place of Work
James Cook
University Hospital, Middlesborough.
23/9/10,
18 participants. / Jane Walker / Macmillan Specialist Nurse. JCUH
Andrea Harris / Macmillan Specialist Nurse. JCUH
Noleen Hunter / Macmillan Specialist Nurse. JCUH
Yvonne Taylor / Support Sister Palliative Care. JCUH
Savitha Shyam Sundar / Senior Specialist Dietitian. JCUH and Teesside Hospice
Sallyanne McKinney / Specialist UGI Cancer Dietitian. JCUH
Doreen Yeoh / Palliative Care OT. Middlesbrough, Redcar and Cleveland Community Services
Joanne Willis / Macmillan Lung Cancer CNS. UHND
Alison Henigan / Macmillan Nurse. Guisborough Primary Care Hosp.
Diane Farrell / Education Manager. St Teresa’s Hospice
Aileen Little / Volunteer Co-ordinator and Catering Manager. St Teresa’s Hopsice
Colette Collins / Assistant Practitioner. Ward 2 Oncology JCUH
Judy Peacock / RGN. Hartlepool and District Hospice
Denise Shepherd / Sister IPU. Hartlepool Hospice
S Richmond / Macmillan Dietitian. CDDCHS
+3 / Didn’t sign in
Royal Victoria Infirmary, Newcastle.
30/9/10,
17 participants / Deborah Scar / OT in Palliative Care. ?where
Dorothy Matthews / Macmillan Nurse in Learning Disabilities. Northumberland Tyne and Wear NHS Trust
Karen McNicholas / Team Leader. ?Pach/RRT
Elizabeth Baker / Marie Curie Nurse
Amanda Zerkee / Marie Curie Nurse
Karen Robinson / Macmillan CNS. ?where
Doreen Hall / Macmillan CNS. ?where
Lisa Baker / Consultant in Palliative Medicine. Community. St Benedict’s Hospice
Karen Hertwick / Palliative Care CNS. ?where
Fiona Stoddart / Marie Curie Nurse
Beverly Wright / Community Specialist Nurse ?where
Lyn Darling / Community Matron. ?where
Janette Goforth / Practice Educator. ?where
Isobel Bowe / Dietitian. ?where
Rose Low / Marie Curie Nurse
Emma Matthews / Macmillan Dietitian. ?where
Scott Covington / Head and Neck Dietitian. City Hospitals Sunderland.
+1 / Didn’t sign in
Greenhills Hotel, Wigton.
7/10/11,
11 participants / Dorothy Haskins / Staff Nurse, Day Hospice. Eden Valley Hospice
Doug McGarr / Catering Manager. Eden Valley Hospice
Lesley Booth / Health Care Assistant. Eden Valley Hospice
Linda Jardine / Staff Nurse. Eden Valley Hospice
Patricia Kirkbride / Colorectal Nurse Specialist and Lower GI Nurse Endoscopist. West Cumberland Hospital
Jane Steele / Staff Nurse Palliative Care Unit. West Cumberland Hospital
Teresa Taylor / Macmillan Clinical Nurse Specialist. Eden Valley Hospice
Christine Rowley / Macmillan Clinical Nurse Specialist. Workington Hospital
Lesley Smith / Macmillan Clinical Nurse Specialist. Workington Hospital
Doreen Bulmar / Macmillan Clinical Nurse Specialist. Workington Hospital
Helen Rowe / Associate Specialist. Palliative Care Unit, West Cumberland Hospital

Appendices