Frequently asked questions (FAQs)

Read our FAQs to find out more about our partnership with the Transforming Cancer and End of Life Care Programme in Staffordshire and Stoke-on-Trent.

What’s the problem?

There are over 60 organisations responsible for delivering cancer and end of life care in Staffordshire and Stoke-on-Trent at the moment and no one is taking responsibility for making sure they work together to ensure patients get the right support at the right time.

People affected by cancer, doctors and nurses in the local area tell us the system isn’t working and patients do not get the support they need when they need it most. Even our own Macmillan nurses can’t provide the high-quality care that patients need because of the barriers and problems they face because of a lack of coordination and integration.

And the statistics reflect this. One-year survival rates in all four Clinical Commissioning Groups (CCGs) involved in the programme are below the England average and well below the European best. Two out of the four CCGs are failing to meet the 62-day referral to treatment cancer waiting time target. Yet the number of people diagnosed with cancer in the area is set to double by 2030.

The current system is simply not fit for purpose in the 21st century and needs a radical overhaul now. By coordinating care we can directly deliver improvements in cancer survival rates, patient experience and ensure people die where they choose.

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How will this solution fix this?

The current set up of services in Staffordshire and Stoke-on-Trent reflect the way cancer used to affect people many years ago. Historically many people who experienced cancer would have died within a few years of diagnosis. So the system was organised to deal with one-off episodes like this.

But the cancer and end of life care story is changing. Now more people affected by cancer live longer after diagnosis so live long enough to experience cancer a number of times in their lives, or have cancer alongside other illnesses. People with incurable cancer are also surviving for longer. We need a system that understands and responds effectively to these new complexities and genuinely works around the patient, not the different services providers.

By appointing an organisation or group of organisations to coordinate cancer care and an organisation or group of organisations to coordinate end of life care, patients will get one point of contact, will only have to tell their story once and will be referred to the support they need when they need it. This may seem simple but we have seen with other programmes that coordination of care can ultimately improve cancer survival rates, patient experience and ensure people die in the place of their choosing. This means two contracts will be awarded; one for cancer and one for end of life.

We are leading the way in helping the NHS tackle these difficult and fundamental problems so we can help improve the lives of people affected by cancer and those at the end of their life. This will ensure no patient or carer gets lost in a complex system. 

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What’s Macmillan’s involvement in the programme?

Macmillan has more than 100 years’ experience in caring for people affected by cancer. We are doing this because we want to improve the lives of cancer patients and for people who are at the end of their lives in Staffordshire and Stoke-on-Trent.

We will work with the organisations in charge of coordination and those delivering the services, holding them to account for specific improvements in cancer survival rates, patient experience and ensuring people die where they choose.

We will also ensure the views of patients and carers on how these contracts are managed are consistently taken into account at all times.

Macmillan will not be awarding the new contracts for coordinating care – that will be the responsibility of the CCGs and NHS England. We are there as facilitators and advisers and to ensure there is a consistent strong patient voice. Nor does Macmillan want to coordinate the care ourselves.

So far the money has been spent on working with patients, carers and clinicians to make sure that we understand the issues and are able to provide the organisations coordinating the care with the most accurate information. This has been done through a programme of focus groups, public meetings, one-to-one interviews, qualitative and quantitative research. We have also used the money to fund the programme team who are responsible for getting the programme in place.

The money invested in this programme will help our nurses to work more effectively to support cancer patients, as well as improving cancer survival rates, patient experience and ensuring people in Staffordshire and Stoke-on-Trent can die where they choose.

We are happy to discuss our plans with everyone and anyone; it is an open, transparent process with the Staffordshire and Stoke-on-Trent communities at the heart of the initiative. We would welcome people to get in touch and make sure their voice is heard as the development of this programme continues. Details of how to get in touch are available on the programme website.

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How much has Macmillan invested in improving care in Staffordshire?

Over the last five years, Macmillan has spent more than £4 million on improving cancer care services in Staffordshire, including our investment in the Transforming Cancer and End of Life Care Programme. We have provided funding to a number of partners across the county, funding more than 30 Macmillan professionals.

This includes new Macmillan Acute Oncology nurses at both University Hospital North Midlands (UHNM) and Stafford Hospital, a county-wide Macmillan Benefits Advice service with Disability Solutions, the building of a new Macmillan Information and Support Service at Stafford Hospital and a number of other nurses supporting people with bowel cancer, bone cancer, urological and lung cancer. We have also funded a large cancer advocacy service at the Beth Johnson Foundation and refurbishments of the Macmillan Cancer Information and Support Centres at UHNM and Queen's Hospital, Burton.

More information about how we raise and spend our money can be found in our 2014 Annual Report.

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How will this work in practice?

Macmillan’s priority is and always will be supporting people affected by cancer. This programme is about improving cancer survival rates, patient experience and ensuring people in Staffordshire and Stoke-on-Trent can die where they choose. All services will remain free at the point of delivery as they are now and we believe the organisations currently providing these services will continue to do so.

We do not control the way the NHS commissions and delivers services and we are not involved in the process of picking the organisations that will coordinate the care.

Some of the organisations already providing health and social care services in the area are private companies, alongside other organisations from the NHS and public sector. The law allows NHS and other public bodies, charities and private companies to bid for public sector contracts like this one, whether alone or in a group. The contracts could be awarded to an organisation or group of organisations from any of these sectors.

Both the cancer and end of life care contracts will be awarded to the organisation or group of organisations that are able to deliver the most significant improvements for people with cancer and those at end of life in three key areas: survival rates, patient experience and helping people to die where they choose. Throughout the course of the contracts they will continue to be held to account on their performance in each of these areas.

Most importantly people affected by cancer will have a say in who is awarded the contracts and they will continue to be included in the monitoring of the new contracts going forward.

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Ways to get support

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