Leading change

Macmillan Cancer Support and Lincolnshire West Clinical Commissioning Group (CCG) led the development of the programme ‘Living With and Beyond Cancer’ (LWABC). They worked collaboratively with all Lincolnshire CCGs, United Lincolnshire Hospitals NHS Trust, the voluntary sector, Healthwatch Lincolnshire, University of Lincoln, Lincolnshire County Council and other local stakeholders. Nursing and care staff have been key players in this collaborative, leading and shaping the programme from the outset, to improve cancer patients’ care, support and experience. They will be pivotal in leading the planned programmes of work going forward.

Where to look

Macmillan Cancer Support and Lincolnshire West CCG launched LWABC to improve person-centred care for people affected by cancer. Focus groups and a patient survey identified unmet needs and unwarranted variation in people’s experience and care, with support services varying from location to location within the county.

What to change

In recent years, the development of cancer services in Lincolnshire has focused on acute treatment. Individual initiatives evaluated well, but the lack of a whole system approach and a failure to promote integration meant that the desired shift towards empowering patients and carers to be able to self-manage hadn’t been realised.

This impacted on people affected by cancer (both patients and carers), who have described feeling isolated, anxious or depressed, with a lack of self-confidence to start living again. A particular issue was the fact that transition from treatment to aftercare meant a loss of the emotional support provided by regular contact with the secondary care team.

How to change

In early 2017, a survey by Healthwatch Lincolnshire highlighted the most common issues which prevented people getting the most out of life following a cancer diagnosis. This included a lack of support, dealing with the side effects of treatment, fear of the cancer returning, financial concerns and inconsistent healthcare.

Insight from the public engagement has informed a work programme based around eight broad themes:

System redesign

• Information governance – patient frustration with having to tell their story repeatedly, and a desire from practitioners to have access to centralised electronic records.
• Pathways – a disjointed journey from diagnosis and treatment, back into primary care. This leads to unnecessary waits and missed appointments. A more holistic person-centred assessment was needed as well as more regular follow up and after-care.
• Integration – services not being joined up, with organisations sometimes not communicating well with each other.
• Workforce – staff were viewed as professional, skilled and dedicated but they themselves were feeling under pressure and wanting more support.

Service delivery

• Communications and conversations – some unclear communication between professionals and patients, carers and loved ones.
• Information, advice and support – a lack of awareness of what information and support is available, and how to find it.
• Support services – patchy coverage, with gaps and funding pressure concerns. There is a lack of psychological and emotional support.
• Equity – variable support, dependent on where people live.

Nurses and care staff across organisations play a leading role in LWABC, which involves a full review of how systems, services, communities and facilities are used to make them more effective. Secondary care and community recovery packages are being rolled out as is a project to improve access to information, advice and support. All of which are being led by nurses.

Adding value

Projects are just starting and evaluation methodologies are in the process of being developed, however key objectives are in place, to be achieved by May 2019:

Better outcomes

• Improved outcomes and better support for people with cancer.
• A tested and flexible service delivery model operational in Lincolnshire.

Better experience

• Person-centred care and support, for patients, carers and loved ones.
• Seamless and co-ordinated support.
• Services co-designed with patients, the public and stakeholders.
• People living with and beyond cancer to be active participants in supported self-management.

Better use of resources

• Better integration between health and social care, statutory and voluntary sectors.
• The right people with the right skills in place.

Challenges and lessons learnt for implementation

• To have true collaboration and bring about system-wide change, we sometimes have to leave our organisational agendas at the door.
• Involve patients and stakeholders from the very start to win hearts and minds.
• Be determined and believe that you can do it!

Find out more

For more information contact:

• Kathie Longbone, Macmillan Cancer Development Manager, kathie.longbone@lincolnshirewestccg.nhs.uk