Cancer patients' journeys need joining up

For more than a century, Macmillan Cancer Support has supported patients and their carers to navigate the healthcare system. Nevertheless, it has become increasingly apparent that if we are to achieve the outcomes patients and carers say they want, we need to do something different.

‘We know there is sometimes appalling and inconsistent communication between clinicians and providers of care − in short, a lack of joined up services’

Recent structural changes to the NHS have not made the journey patients and their carers take any easier. Commissioners are struggling with what appear to be real reductions in investment resources and far fewer staff to work with communities, plan services and manage contracts.

The commissioning environment has become far more complex, especially with changes in specialised commissioning and new relationships that need to be built as accountabilities shift.

On top of that, demand is also set to increase just as resources decline. Macmillan estimates the number of people living with cancer will increase from 2 million to 4 million by 2030. At the same time, it is estimated the number of deaths from all diseases will increase by 17 per cent.

Joining the dots

In conversations with patients across the country, Macmillan found their underlying concerns are about the quality of their journey.

We know there is sometimes appalling and inconsistent communication between clinicians and providers of care − in short, a lack of joined up services that reflect people’s needs. Added to this, there is a public crisis of confidence with the way healthcare is led and delivered.

‘A fundamental shift is now required away from the current focus on interventions and provider based commissioning’

If that were not enough, current approaches to commissioning and service change tend to be highly focused on specific interventions, providers, the control of costs, quality and outcomes in different parts of the journey. This is leading to disconnected changes in one part of the patient journey regularly having unintended, not thought through consequences in another. One organisation’s cost improvement is another’s cost shift.

All of the above concerns have led Macmillan to believe that a fundamental shift is now required away from the current focus on interventions and provider based commissioning, to one that builds services around the patient and their carers.

Prime provider

In Staffordshire we have been very fortunate to have a partnership with commissioners who share and embrace this vision. Staffordshire commissioners consist of five clinical commissioning groups, Staffordshire Public Health, two local authorities and specialised commissioners.

The model we have chosen together is that of the prime provider, where one organisation is contracted to manage the whole pathway. In the county, we are supporting work to procure two prime providers, the first for all cancer services and the second for end of life care for all conditions.

These are very separate pathways and it is important we understand that cancer can be a long term condition. For many people (myself included), cancer is a condition you live with, as are the consequences of treatment.

The procurement process for these two prime providers will begin in early 2014 and follows 18 months of intense activity. We have been working with service users, carers and representative organisations, clinicians and others to understand how current services work.

Noting concerns

We’ve listened to what people’s concerns and aspirations are and have linked this to national best practice and guidance.

‘Evaluations of this project will allow us to share the lessons of what we hope will be a better way of supporting people affected by cancer’

From the project’s inception, the focus for commissioners and Macmillan has been on co-designing solutions with the very people who are affected. This will continue during procurement as we use the competitive dialogue process to identify the successful prime providers.

The two contracts will run for between seven and 10 years to ensure a measured approach to change. Our concern has always been that engagement and co-design should be the guiding principle for the whole project.

Therefore the successful prime providers will be expected to demonstrate throughout the contract their involvement of service users, carers, clinicians and the community in any changes and improvements.

The contract will be outcomes based, reflecting improvements in morbidity, mortality and the experiences of patients and carers.

Monitoring role

Macmillan is not interested in becoming a prime provider but we will continue to support and monitor this project after the prime providers have been appointed.

Throughout the charity’s history, Macmillan has funded and supported change. We believe we have a responsibility to support change on a systems-wide basis, which is why we are financially supporting commissioners in this project.

Independent evaluations of this project will allow us to share the lessons of what we hope will be a better way of supporting people affected by cancer.

Glenn Warren is a commissioning adviser at Macmillan Cancer Support