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Working in partnership with patients to redesign a service

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Anne Duffy, BSc, PGD, RN, is Macmillan lead cancer nurse; Hester Noon, BA, PGD, is Macmillan cancer information service manager; Yvonne Noble, RGN, is senior chemotherapy sister; all at Queen Mary?s Sidcup NHS Trust, Kent.

ABSTRACT Duffy, A. et al (2006) Working in partnership with patients to redesign a service. www.nursingtimes.net

ABSTRACT Duffy, A. et al (2006) Working in partnership with patients to redesign a service. www.nursingtimes.net

After receiving a number of complaints from patients with breast cancer about the wig service available to them, a team of chemotherapy nurses used a patient questionnaire to review the service. The findings revealed a number of problems with the service, and it was redesigned and a new supplier appointed. When reflecting on the process we identified that partnership workingwasstill limited as we had failed to involve users in selecting the new wig supplier. We concluded that this could be due to our own anxieties about user participation, and that a change in working practices and the way we view patients was necessary to ensure they can be fully involved at all stages of service development.

A key challenge for nurses is to ensure patients/service users are involved in all aspects of healthcare, including the redesign of services. There is a long history of user involvement in cancer services. One of the key principles in the Calman-Hine report (Expert Advisory Group on Cancer, 1995) was that this should be encouraged. It is also a core theme of The NHS Plan and the plan specific to cancer services (Department of Health, 2000a; 2000b), which sets the agenda for modernising the NHS and advocates involving service users in the process of change.

The aim of user involvement is to ensure that services are patient-focused - a key policy of the DH (2001): 'We want to move away from a system of patients being on the outside to one where the voices of patients their carers and the public generally are heard and listened to through every level of the service acting as a lever for change and improvement.'

Charitable organisations have a strong role to play in promoting user involvement. For example, Macmillan Cancer Support (formerly Macmillan Cancer Relief) helps patients to express their views and provides training on becoming involved (Gott et al, 2002). Although Queen Mary's Sidcup NHS Trust widely embraces user participation and appreciates patients' contribution and support, nurses' involvement in such initiatives has been limited. This may be because nurses have not seen them as a priority. However, user involvement and the development of partnership working has been growing within the trust's cancer service since 2003, and is led by the nurses and service improvement facilitator.

Nurse involvement is important if patients are to be heard and listened to at every level, since they are often the professionals working in closest proximity to service users. It is also important for nurses to gain an understanding of what local people want and need from cancer services. Information on current provision and any problems related to it need to be shared openly and honestly to ensure user involvement is meaningful (DH, 2003).

Breast cancer services

Patients with breast cancer who were receiving chemotherapy at St Mary's obtained wigs from a local hairdresser who had a NHS contract for this service. Approximately 50-60 patients with breast cancer accessed the wig service in the financial year 2004-2005. The chemotherapy nurses received a number of complaints and comments about the service, which raised issues about what was expected of and provided by the hair salon.

Breast cancer and alopecia

Breast cancer accounts for one-third of all cancers in women. There are more than 40,000 new cases each year in the UK and approximately 13,000 people die from breast cancer each year (Cancer Research UK, 2003). One in nine women will develop breast cancer during their lifetime, and approximately a third of these will receive chemotherapy, although this proportion is increasing with the development of new treatments.

One of the most distressing potential side-effects of chemotherapy for patients dealing with cancer is alopecia. (Baxley et al, 1984; Cline, 1984). In a study by Munstedt et al (1997) 47% of the patients surveyed stated that alopecia was the most traumatic side-effect of their treatment. Coates (1983) demonstrated that the severity of alopecia ranked third in a list of distressing symptoms for cancer patients after nausea and vomiting. Hair loss can have a negative impact on body image (Baxley et al, 1984), self-esteem (Batchelor, 2001) and social relations (Freedman, 1994). Many women find it more difficult to cope with than the loss of the breast itself because it is visible to others, affects their femininity and is a constant reminder of their treatment The psychological and social impact of hair loss can be a symbol of cancer for the woman herself and others, and represents a personal confrontation with illness or mortality, vulnerability, powerlessness, shame, loss of privacy, punishment, as well as a change in self-perception or a change in sexual attractiveness (Freedman, 1994).

The current wig service

Having listened to unsolicited feedback from patients about the wig service it was clear that as nurses we needed to systematically obtain more views from as many service users as possible, to see if and how the service could be improved. Since the contract had been in place for a number of years, the cancer manager and Macmillan lead cancer nurse decided it was appropriate to meet with the provider.

Following the visit a patient survey was designed to gather information that would inform the review of the current service. The visit and patients' feedback helped us to develop a questionnaire to assess the service environment, customer care and wig provision. For ease of evaluation a yes/no format was used, with space to add comments. The survey was sent to 52 patients who had been referred for a wig between April 2004 and April 2005. Thirty-two replies were received - a response rate of 61.5%.

The aim of the survey was to elicit views on how users were welcomed, the environment and whether they were offered any extra services. Some users had commented on privacy, so questions were also added to address this issue.

Findings

Quantitative results

Some 60 per cent of respondents were satisfied with the overall service, while 27% were dissatisfied. The remaining 13% did not respond to the question. While the majority of responses were positive for most questions, over half of respondents were not offered a drink (21; 66%) or written information (17; 53%). Other questions to which relatively large numbers of negative responses were received included whether the service was explained (13; 41%), whether respondents had privacy to browse (12; 37%), whether the environment was appropriate (11; 34%) and whether they felt valued as a customer (11; 34%). Figs 1-3 summarise the findings from the quantitative aspect of the survey.

Qualitative results

Respondents who were satisfied with the service added limited comments to that effect, but those who were dissatisfied made more. Some general comments concerned the limited selection of wigs available, hurried appointments and the fact that they would have liked the wig styled to look like there own hair. A few comments have been selected to highlight patient's feelings:

  • 'The wig fitting was the most traumatic and embarrassing experience.'
  • 'The most traumatic part was when she put a blonde wig on me and told me not to look at the colour but to look at the style instead. I found this very difficult as I am an Asian lady with jet black hair. Blonde does not go with my skin tone.'
  • 'Staff were preoccupied.'
  • 'Very impersonal at a very vulnerable time.'
  • 'It would be nice to have this wig service provided at Queen Mary's.'
  • 'They are not as attentive and friendly as the hospital staff.'
  • 'Salon old and dirty. Please find another hairdresser for the sake of all your patients because it is a frightening thing for most women to go through.'

The survey revealed a number of areas that the nurses felt needed attention in order to improve the current wig service. It was evident from respondents who spoke up that hair loss can have a devastating impact. However, we were handing over a very critical part of the alopecia experience (the wig fitting) to an unknown party (the wig supplier). The National Framework Agreement states that patients should be treated with dignity and empathy at all times (NHS Purchasing and Supply Agency, 2004). Competency issues relate only to the wig provider's ability to cut, re-style and fit wigs. Nowhere is there mention of the provider needing any training/education in treatment-induced alopecia and the needs of this patient group (NHS Purchasing and Supply Agency, 2004). The situation needed to be addressed to ensure patients received a high standard of care throughout their experience. However, the survey also highlighted that many areas were outside the trust's control, such as the salon environment, because the service was provided by an outside contractor.

The trust had a number of valuable resources that could be utilised to offer support to women experiencing treatment-induced alopecia, including staff and environment. On reviewing the survey results the lead cancer nurse and chemotherapy nurses felt a greater input into the wig service from the trust would significantly improve patients' experience.

A purpose-built unit at St Mary's, the Douglas Macmillan Centre, offers information and support services to anyone affected by cancer. It provides complementary therapies, counselling, headgear (scarves for women experiencing hair loss) and make-up sessions. The centre is staffed by volunteers who have experienced cancer and a cancer nurse, who provides in-depth information and support. It is located opposite the chemotherapy unit and therefore easily accessible to clients. The Douglas Macmillan Centre was felt to be an ideal environment for providing the wig service and would have trained cancer nurses on hand should anyone become distressed.

We invited three wig providers to tender for the contract to provide an in-house wig service. Having listened to patients' comments and in response to the survey we set certain criteria that we felt were the minimum service our patients deserved. The cancer manager, lead cancer nurse and manager of the information centre met the prospective providers and selected the provider we believed would deliver the service we wanted for our patients.

The lead cancer nurse applied for a small lottery grant to set up the service and was awarded £4,100. Some of this was used to create an environment that offered privacy for those trying on wigs. The rest of the money will go towards providing catalogues and information for patients and carers.

With everything in place, the new service commenced in November 2005. The first patient to use it was delighted with the man who now provides the service in the Douglas Macmillan Centre.

Lessons learned

The lead cancer nurse expressed one reservation when we had selected the service provider. She pointed out that while we had listened to users' comments and responded by sending out a survey to those who had previously accessed the service, users had been excluded from the most important part - choosing the provider. Being part of the tendering process was a new experience for us, and it had not occurred to us to include users. Acknowledging our limited experience we would probably have felt uncomfortable with a user being involved in case their previous life experience meant they knew more than us. There is also the possibility that as professionals we think we know best.

Such reflections raised questions about how ready we were to involve users in decision-making. If we had really wanted to redesign the service around their needs, they rather than us should have been the people to choose who would provide the new service. The DH (2003) states: 'All stakeholders need to feel that they have had the opportunity to influence the debate at important stages and that they have been properly informed throughout.'

This was the first time we as a group of nurses had redesigned a service for patients with cancer after listening to patients/users. Poulton's (1999) model on user involvement suggests a hierarchical structure demonstrated in the form of a pyramid that defines the various levels of user involvement (Fig 4).

Our use of a survey involved users in evaluating the service, which puts our user involvement into level 4 of Poulton's model, 'consumer satisfaction'. This appears currently to be the most common level attained for user involvement (Poulton, 1999). Overall, nurses should aspire to achieve 'participation and empowerment', where patients are involved with all parts of the process. Partnership working should occur between anyone providing NHS services with anyone receiving those services.

It may require a culture change to achieve true partnership working. Only when health professionals stop assuming they know best and acknowledge that users have an insider's view of the service - and also have skills and knowledge to contribute - will services become more responsive to patients' needs.

Clough (2003) believes there are genuine anxieties for both staff and patients about working together, and this has been true for us as a nursing team. We had to learn to make use of users' skills to ensure they felt they were contributing to service improvement. This has not been easy and we have been learning as we go along. However, our confidence in this area has grown.

Conclusion

Users need to be involved through the whole process of service development if we are going to meet government requirements that future services be designed around the patient. We have been able to reflect on our own service redesign and acknowledge that we still did not empower patients to make the decision on the service provider. This may have been due to our own inexperience or lack of knowledge about partnership working. In the future we would involve users in the whole process and value their contribution. This will require a change in working practice and the way professionals view users and their potential contribution.

References

Batchelor, D. (2001) Hair and cancer chemotherapy; consequences and nursing care - a literature study. European Journal of Cancer Care; 10: 3, 147-163.

Baxley, O.K. et al (1984) Alopecia: effect on cancer patients' body image. Cancer Nursing; 7: 6, 499-503.

Cancer Research UK (2003) Breast Cancer Incidence Factsheet. Available at: www.cancerresearchuk.org.

Cline, B.W. (1984) Prevention of chemotherapy-induced alopecia: A review of the literature. Cancer Nursing; 7: 3, 221-228.

Clough, C. (2003) Involving patients and the public in the NHS. Clinical Medicine; 3: 6, 551-554.

Coates, A. et al (1983) On the receiving end: Patient perception of the side-effects of cancer chemotherapy. European Journal of Cancer; 19: 2, 203-208.

Department of Health (2003) Strengthening Accountability: Involving Patients and the Public. Policy guidance: Section 11, Health and Social Care Act 2001. London: DH.

Department of Health (2001) Involving Patients and the Public in Healthcare: Response to the Listening Exercise.London: DH.

Department of Health (2000a) The NHS Plan: A Plan for Investment, a Plan for Reform. London: DH.

Department of Health (2000b) The NHS Cancer Plan: A Plan for Investment, a Plan for Reform. London: DH.

Expert Advisory Group on Cancer (1995) A Policy Framework for Commissioning Cancer Services (Calman-Hine Report). London: DH.

Freedman, T.G. (1994) Social and cultural dimensions of hair loss in women treated for breast cancer. Cancer Nursing; 17: 4, 334-341.

Gott, M. et al (2002) Involving users, improving services: the example of cancer. British Journal of Clinical Governance; 7: 2, 81-85.

Munstedt, M. et al (1997) Changes in self-concept and body image during alopecia induced cancer chemotherapy. Supportive Care in Cancer; 5: 2, 139-143.

NHS Purchasing and Supply Agency (2004) National Framework Agreement for the Supply and Repair of Wigs.London: NHSPSA.

Poulton, B.C. (1999) User involvement in identifying health needs and shaping and evaluating services: is it being realised? Journal of Advanced Nursing; 30: 6, 1289-1296.

Poulton, B.C. (1997) Consumer feedback and determining satisfaction with services. In: Mason, C. (ed.) Achieving Quality in Community Health Care Nursing Services.Basingstoke: Macmillan Press.

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