Making the change

We'll look at:

1. The evidence you'll need to gather locally to demonstrate the need for change
2. How you can find out what’s worked elsewhere
3. Developing an action plan

Patient numbers

Identifying the number of patients with secondary breast cancer within your place of work, including those who are living with the disease and the number newly diagnosed each year, can be tricky. The following may help capture this information.

1. Review oncology clinic lists.
2. Use past audit or local statistics, if available, or consider speaking to your local cancer registry about what is recorded in your area. Since 2013 it has been mandatory to record data on recurrence and metastases in England but it is still not being done accurately or universally. Information about COSD and local contact details for Public Health England are available on the Public Health England website. While data collection is not mandatory elsewhere in the UK, it may be helpful to contact the Scottish Cancer Registry, the Welsh Cancer Intelligence & Surveillance Unit, or the Northern Ireland Cancer Registry. 
3. Check with your MDT meeting coordinator if any records are kept of patients with secondary breast cancer discussed at the breast MDT meeting.
4. If possible, carry out a short audit of the number of patients with secondary breast cancer seen by a specialist nurse and also the number of patients ‘missed’.
5. You can find an editable CNS data collection spreadsheet in the Nursing Resources section of this toolkit.

Patient views

Evidence from patients will strengthen your case for making changes to your service. You can gather this in a number of ways.

1. Consider carrying out a patient experience survey. This can provide vital pointers for improving the service and will also be an essential benchmark for auditing against any changes you make. We have developed a template survey you can adapt and use.
2. Carry out a patient focus group. This is a good way to explore your patients’ problems and needs to help you develop your service. This approach allows you to gather information from different patients with different experiences. As the group explores through discussion, patients share, discuss and challenge different viewpoints. We’ve provided a quick guide to running a focus group.
3. Contact local patient groups for their views.
4. Look for patient reports of how contact with a specialist nurse significantly contributed to care or, conversely, how the absence of a clinical nurse specialist resulted in gaps in care.
5. Talk to your Patient Advice and Liaison Service (PALS) for any evidence they might have. For example, specific cases where care for patients with secondary breast cancer has been shown to be lacking.

Talk to other nurses

1. Join Breast Cancer Now's Nursing Network to support your professional development. The Network keeps you up to date with the latest developments in breast cancer and there is a sub-group of nurses who support patients with secondary breast cancer. To join the Secondary Breast Cancer Nursing Group contact nursingnetwork@breastcancernow.org
2. Make contact with and visit teams in other hospitals who have changed their service to meet the needs of patients with secondary breast cancer.
3. Contact Breast Cancer Now's Secondary Breast Cancer CNS - catherine.priestley@breastcancernow.org - who will be able to share her knowledge of good practice around the UK.
4. Read the case studies in this toolkit for ideas and examples.

Draw on external expertise

1. Get in touch with your Cancer Alliance for advice.
2. Consider contacting Macmillan Cancer Support – it offers funding for 3 years towards specialist nursing posts. There should be a Macmillan local Partnership Manager for your area who can offer advice.
3. Use the NICE Advanced breast cancer: Diagnosis and treatment, tools and resources section. It contains a series of case studies of nurses who are in post as specialist breast care nurses for secondary breast cancer; how their roles work, and their remit.
4. Read Alison Leary’s 2011 article ‘Proving your Worth’ and visit the Apollo Nursing Resource for further ideas. 

Identifying solutions that will work in your hospital

Using the evidence you have gathered you can consider what might work to address local needs within the unique context of your hospital. Plan the ideal model for a specialist nursing service in your unit. Think about:

1. Your existing breast care nursing team
2. Using administrative support to free nursing time
3. Other ways your role could be streamlined
4. Whether proposed role changes/additions will be a dedicated post holder or shared within the team, look at the case studies for examples
5. Talking to other cancer nurse specialists and other nurse specialists about the development to their teams – they may have made changes you can learn from
6. Exploring different ways of communicating with patients, for example, use of email, nurse-led clinics and support groups
7. Your resources – you may have to consider, if you are taking on some new aspects of care, what impact this will have elsewhere

Gathering support from your colleagues

1. If you are going to submit a bid for increased specialist nursing time or a dedicated post for secondary breast cancer, consider doing it with oncologists and other relevant colleagues.
2. Read our hints and tips on submitting a strong business case.
3. Look at arranging meetings with the senior management team/Cancer Alliance managers/lead cancer nurses to present the key issues and gaps in care that can be met by specialist nurses.
4. Try to identify champions/allies for your cause and nurture them.
5. Consider taking a patient representative to meetings. Try to identify benefits to the other MDT members – saving their time, streamlining care, reducing admissions and enhancing adherence to treatment.
6. If possible, show cost-savings as commissioners notice these.

Investigate external support/funding

Identify local cancer charities who may consider funding/part-funding.

The National Cancer Research Institute (NCRI) could be an option if there is a commitment to increase the number of patients with secondary breast cancer into clinical trials locally. Your local cancer clinical trials coordinator should have more information.