Collaborative Leadership – Citizen Story

I was a patient at the Primrose Breast Care unit where I was diagnosed with breast cancer,  I was approached by Kate, a Nurse Consultant and Lead Nurse for the Breast Service at Plymouth, whom I met during my treatment about doing this collaborative leadership programme. We met up and were a bit unsure as to what the collaboration was about and what was expected.  I had never done anything like this before and was nervous about talking to Kate about my experiences and how I thought they could be improved.  I was really impressed with how Kate listened to me and I felt that I could speak honestly about the gap I felt there was in the service.  The Primrose unit prepared me for my treatment and was a great support, but in the end, I felt I was left alone with lots of unanswered questions. I think we worked well and listened to each other which was difficult at times for both of us.

After watching a video made by a friend on wild swimming we both agreed it would be amazing to do a video showing life beyond cancer and a new normal. I enjoyed designing and making the video, although it was hard at times to show my vulnerable self when I was very sick during treatment. Kate and I had many discussions about the video and programme which helped us to focus on the project. Mark (the programme leader) was a great leader; I particularly liked the ladder of influence – getting back the power and having a voice helped a lot with my confidence. We were surprised about how we really connected with the rest of the group, it was great seeing us all develop and we looked forward to our discussions each month.

I have shared the video (see below) with many people, including the Primrose Unit, on social media and Youtube; I have had great feedback from women all over the world who have gone through similar treatment and they have said it really helped them.

After doing this collaboration I would recommend and hope that more service providers and service users get together to talk – I feel that it will help improve the aftercare.  Having the funding for an End of Treatment Nurse is a fantastic achievement of the collaboration of Kate and myself I am very proud of the end result of this programme.

By Kate Landsell

I am a Nurse Consultant and Lead Nurse for the Breast Service in Plymouth. I have spent many years working in Cancer care; trying to deliver services that help patients navigate their way through what is a very difficult time in their lives.  

I was approached by the Medical Consultant, who leads the breast service, who had been approached by one of the Executive Medical Leads to see if anyone would be interested in taking part in a patient experience project.  

Carving out time in a busy NHS is difficult. We all have clinical and managerial responsibilities and pressures that we must work within. Even if we can see that there are gaps or areas in services that could be reviewed or improved, we often carry-on doing things the same way because we do not think we have time to examine or change them. 

I really liked the sound of the simplicity of this project opportunity. Essentially, work with a service user and listen to their experience of the service and see what themes emerged from these conversations.  To identify a service user, I could approach I thought about women who had been through our service and someone I knew, who had expressed an interest in helping with projects in the future, came to mind and agreed to collaborate with me. The programme was held online, and I was interested to see how such a programme would feel with collaborative pairs from across various services, not just the NHS. 

If I am honest, I was initially challenged by what appeared to be a lack of an obvious structure to the project.  I have been involved in other patient-focused projects before; using ‘tools’ such as process maps and driver diagrams to deliver change. I also know that I am very outcome-focused, as a person, and in my Nurse Consultant role. Driven by the desire to show something tangible in the service for the time I have spent doing it. Often, in the NHS, we are conscious that staff and managers, especially in such stretched times, could perceive this as a luxury.  

Kairen and I started the programme unsure of what to expect but open to what lay ahead. I was looking forward to listening to someone’s experience of the services we run and felt really intrigued to see where, starting with just a single user’s story, it would take us.  

I found listening, really listening, uncomfortable at times. It was hard not to rush to assumptions or feel defensive about what had not worked well. I found it very interesting how Kairen’s story and reflections on her experience started to resonate with comments I had heard from patients about gaps in care or aspects of care that had not gone well. During the sessions, when we came back to the wider group to discuss our projects, it was interesting to see how the collaborative pairs developed an understanding and, despite not being physically together during these sessions, were able to communicate to the wider group how it felt working together.  

Mark, (the very inspiring, programme leader) did drop in useful models/ideas to think about. One that stuck with me was –  

Discover (What is), Dream (what might be), Design (what should be) Deliver (what will be). 

He also talked about the ‘Double Diamond’ (user/professional) effect of these collaborations. I liked this analogy and could see the benefit of both our inputs as we progressed through the programme. We also talked a lot about power and the old (professional) power and how to harness the new (user) power. It was fantastic to feel a tangible shift in the presence of the users’ voices as the sessions progressed.  

Kairen talked very openly about the gap in care that she had felt at the end of treatment. She described having so much input from staff while going through chemotherapy but that she felt vulnerable and lost as the treatment came to an end and she was quite quickly discharged back to primary care. I was aware that our small number of breast cancer nurse specialist staffing covers a very large service and much of the focus is on diagnosis and the treatment pathways. I understood from listening to Kairen (which resonated with other women’s comments) that we really needed to consider and invest some time in preparing women as they came to the end of treatment, and this then became the focus of our project. 

We decided that a video for women to view about the end of treatment would work well. The structure and themes of the video emerged from our discussions, and it was so inspiring to see Kairen take on the production of this with such passion. I think she really felt that she was helping to make a difference to those coming through the service behind her. We set ourselves a deadline for the video for the presentation day at the end of the programme.  

Having completed the programme and the video, I can see the value of a collaborative approach to improving care and simply being open to listening to people’s experiences and together, coming up with an aspect of care to focus on and improve. I think we both found it very thought-provoking and rewarding.  

I have enjoyed sharing this experience more widely with other cancer nurse specialist service leads. Often service improvement projects can feel overwhelming and unachievable, and this approach made it feel much more personal and manageable which is then very rewarding as you see the project outcome. I think even if we hadn’t completed the video, I would still feel like I have gained a greater understanding of just how powerful a user’s experience is when shaping services and will certainly use this to explore our service priorities in the future.  

Kairen and I were both really surprised at how much connection there was with the wider group. For me, it was so refreshing to have a mix of services and project ideas within the group, not just NHS work. Watching the collaborative pairs develop together was fascinating and being online did not seem to detract from us feeling part of the wider collaboration that Mark generated.  

Kairen has come into the Breast Unit to share her video and the experience of taking part in this project with the wider breast cancer team. I have been successful in securing funding from a local breast cancer charity (The Primrose Foundation) which has agreed to fund an End Of Treatment Nurse Specialist post to take on this work and the gap that Kairen identified, forward.  Kairen’s video has already been shared on the National Breast Care Now charity website, YouTube, and has been liked by people from all across the globe. 

I cannot really believe that this all started with a conversation between Kairen and I. Look at what can be achieved when we start to listen!  #smallproject/bigdifference 

Kate Lansdell 

Nurse Consultant/ Lead Nurse  

Breast Services 

Plymouth