What is the Transforming Cancer and End of Life Care Programme?

The Transforming Cancer and End of Life Care Programme is a new and innovative programme to improve the way people with cancer or those at the end of their life are cared for and supported in Staffordshire and Stoke-on-Trent. The aim of the programme is to change the way the current services are run so that patients, their families and carers have a better experience of care.

North Staffordshire, Stoke-on-Trent, Stafford and Surrounds and Cannock Chase Clinical Commissioning Groups are working with NHS England, Macmillan Cancer Support, Staffordshire County Council, Stoke-on-Trent City Council and Public Health England to improve cancer and end of life care through the Transforming Cancer and End of Life Care Programme which launched in April 2013.

We are working with patients, carers, doctors and other health professionals to make sure that in the future the treatment and care provided in Staffordshire and Stoke-on-Trent is the best in the UK and among the best in Europe.

Why are you doing this?

There are over 60 different organisations responsible for delivering cancer and end of life care in Staffordshire and Stoke-on-Trent, and at the moment no one is taking responsibility for making sure they work together in the best interest of the patient.

Patients in Staffordshire and Stoke-on-Trent tell us they often have to deal with changed appointments, missing notes, turning up and having to repeat their story, not getting the right help or advice, not always being able to get care at home after they are discharged from hospital – all because there is no co-ordination between all the different organisations and departments providing their care. Too many of them are rushed back into hospital in an emergency because they don’t have the support they need to stay at home and, ultimately too many of them are dying in hospital rather than their place of choice.

Health and social care professionals have told us that services are unco-ordinated and this can create unnecessary delays and blocks for patients. As a result of this and poor communication between services, professionals feel that they face barriers and problems when caring for patients. If the system is joined up and coordinated, professionals would be able to work more effectively and provide better care for patients.

We want to make sure that care and services are coordinated so that they patient has a better experience and less complicated journey.

What are you doing?

We want to appoint two lead organisations, one for cancer care and the other for end life care. The organisations will be  ‘service integrators’ to co-ordinate cancer and end of life care. Currently there are 60 organisations delivering these services and they will continue to deliver these services. The programme aims to ensure that these organisations work together so that patient care is co-ordinated, and that patients do not have to navigate a complex and confusing system.

The role of the service integrators will not be delivery of services but to co-ordinate all the providers to improve patient experience. By co-ordinating care we can improve cancer survival rates and make sure people can die where they choose. The organisations that currently deliver services will continue to do so. This is about changing systems and processes to improve patient experience.

We will work with the lead organisations, which will be accountable to clinical commissioning groups (CCGs), to make sure we provide seamless care and address the concerns patients are sharing with us.

We want to ensure patients’ views are heard and we want to ensure services are joined up.

Our aim is to radically change both the commissioning and delivery of cancer and end of life care, so that care is integrated, co-ordinated and personalised around the patients’ needs.

What does this mean to me as a patient, carer or family member?

The aim of the programme is to make sure patients and carers have a positive experience of cancer and end of life care. Currently there is a lack of consistency which means that not all patients and carers get the same experience of care and support.

The programme will ensure no patient or carer gets lost in a complex system, people get the support they need and will ultimately improve their chances of surviving cancer. They will have one point of contact, they will only have to tell their story once, they will completely understand their treatment and care plan, and will have the opportunity to help shape it, and to be supported at all times through the patient journey.

Is this privatising the NHS?

No. Our aim is simple. We want to appoint two lead organisations, one for cancer care and the other for end of life care in Staffordshire and Stoke-on-Trent so that it is amongst the best in Europe.

We want to address patients’ concerns and ensure they do not feel ‘lost’ in the system or confused, or have to repeat their circumstances time and again.

It is important to note the organisations we appoint will continue to work with local providers, as well as being fully accountable to the NHS via the four CCGs.

Currently there are 60 organisations that are providing cancer and end of life care in Staffordshire and Stoke-on-Trent, they are a mix of NHS, voluntary and private sector organisations. When the service integrator is appointed the mix of organisations will continue to provide care and this will remain free to patients.

Government rules mean that NHS and other public bodies, third sector organisations and private companies can all bid for public sector contracts, whether alone or in consortia.

At the end of the first stage both private and public sector organisations were successful. Patients are at the heart of the programme and they continue to bring their personal experience to help commissioners shape these services. Our patient champions are a key part of the programme and are involved in the decision-making process.

Is there a risk that £1.2 billion of public money will be used to make profits out of cancer?

The sum of £1.2 billion is often used in headlines in a misleading way.

This figure is simply the current amount all four CCGs will spend on cancer and end of life care in 2014/15 (circa £120 million) multiplied by the 10-year duration of the programme.

This money will continue to be spent locally by commissioners.

NHS budgets are under severe pressure – with a target of making a four per cent efficiency saving every year – so everyone in Staffordshire and Stoke-on-Trent should be hoping that we will spend at least £1.2 billion on cancer and end of life care services over the next decade.

Given the projected increases in both cancer cases and the number of deaths, especially people wishing to die at home, the pressures on all resources is going to be severe.

That’s precisely why we have to look at ways to do things differently, if we want better clinical outcomes and a better patient experience in the future.

Who are the 60 organisations responsible for delivering cancer and end of life care in Staffordshire and Stoke-on-Trent, and why can’t the NHS fix this?

At the moment there are a range of organisations providing different elements of cancer and end of life care. For example, a hospital surgeon works for a different organisation to the local GPs. Of the 60 organisations currently responsible for providing cancer and end of life care, for end of life care services, three are already run by private companies, 16 are run by the NHS and 15 are run by voluntary sector organisations. For cancer services, three are run by private companies, 16 are run by the NHS and seven are run by voluntary sector organisations. In addition, there are 126 GP surgeries in the local area, all of which are private providers.

At present, they are each contracted to deliver their elements of the cancer or end of life care pathway but there is nothing in place to help them co-ordinate with each other. We are looking for an organisation with the specialist expertise needed to co-ordinate cancer and end of life care services because no one is currently able to this effectively. The organisations could be from the NHS, private sector or voluntary sector, or be a combination of all three. We genuinely will not know who will be appointed until we have been through what will be an extensive procurement process. The most important thing is that the organisations will be held accountable for their performance and patients will have been involved throughout the whole process.

Local hospitals, specialists, consultants, GPs, and nurses are well regarded so why risk change?

We are not criticising our local NHS cancer care and end of life services in any way. They provide high standards of care within the constraints of the systems in which they operate and the budgets they have.

However, although there is high quality local care, the patient experience can be improved. All too often patients say they had excellent care from ‘the specialist, my helpful GP or the wonderful nurse’ but then go on to complain about changed appointments, missing notes, turning up and having to repeat their story, not getting the right help or advice, not always being able to get care at home or in the right setting, and this story is repeated by patients, their families and carers alike.

This is about changing the processes, the systems and the pathways that patients with cancer or near the end of life follow in future, so we get a better clinical outcome: full recovery or longer life expectancy, better life quality or a dignified pain free death in the place of their choice.

Why do you need a lead organisation or service integrator? Isn’t this part of existing CCG duties?

It took nearly two years of careful planning and development to get to the stage where we could start the official procurement process. This will take us into 2016. Then there is a two-year phase of co-design and planning/costing new patient pathways for cancer and end of life, followed by the eight-year implementation and improvement phase.

We want care to be so much better in a decade’s time but we know there is no quick fix, simple, easy solutions. If there were, we would have done them already.

Commissioners have many other health care services to deliver apart from cancer and end of life e.g. paediatric services, A&E, maternity services, heart and other major organs, orthopaedic and many more services.

The lead organisations will be focused and they will have to prove they can bring a range of new skills and solutions that are needed to improve the patient experience. They will also be contractually bound and accountable to the NHS CCGs, to implement the changes and deliver the results in reality, on the wards, in the clinics and in homes.

Given the recent issues in the Staffordshire health sector, should this programme be delayed?

The four CCGs are very aware and mindful of the challenges and issues they have faced and continue to face a number of local health care providers, especially acute units, and the financial realities of the local health economy.

However, we can only improve clinical outcomes and improve the patient experience within the budget capacity if we make changes in the ways we deliver health care in the future.

The programme is confined to cancer and end of life services – two important areas, but two clearly defined areas that only account for circa £120 million of expenditure each year across all four CCGs. The commissioners do not believe that past and recent local problems should be allowed to be a barrier to much needed transformation in clinical outcomes and patient experiences.

Have the public, patients and carers or the many other groups who care about local health, been engaged?

From the very start of planning the programme, the voice of the patient (and their families and carers) has been at the heart of our approach. This programme has adopted a co-design approach which means that patients, carers and health and social care professionals have been consulted and involved from the beginning. Co-design captures the experiences of patients, carers and staff through discussion to help shape service improvements.

We have talked regularly with a wide range of clinical groups involved in all stages of cancer and end of life care. We have had an active communications programme and a robust engagement programme and this continues throughout every stage of the plan.

Patients are at the heart of the decision-making process and are working alongside commissioners to appoint the service integrators for cancer and end of life care services.

The potential lead organisations also have to show how they will engage fully with clinicians, patients and the public throughout the two-year co-design stage, and then show the way clinician and patient experience will inform the measurement and improvements process over the main eight year contract phase.

Why is Macmillan Cancer Support included in this partnership?

Macmillan has more than 100 years’ experience centred on cancer care and is a respected and independent authority on all aspects of cancer in the UK. In the past they have been recognised for the iconic Macmillan nurse, and have also been associated with end of life and palliative care, but over the last few decades Macmillan has been steadily expanding their field of influence to include all aspects of service development, design and delivery, across the whole cancer and end of life pathways. Macmillan’s fear is that if the NHS is not able to learn how to make the changes that are urgently needed in order to make significant improvements to the experience of patients, carers and family members, others will be brought in to do so, and that may include the provision of services, not just their management.

So Macmillan has chosen to support this programme to provide the expertise and support to enable this level of change to happen. Their primary goal is to improve the lives of people affected by cancer and if they believe if they do not support this transformational change, it will not happen as it is not feasible to expect the NHS to take resources away from frontline services to support such an intensive programme of work. Without it, demand will rise and the disjointed and inequitable nature of the current system will only get worse. Macmillan’s innovative approach and history of successful partnerships with the public and private sector allows them to understand what is needed to create world-class cancer care, and their independence allows them to bring the patient perspective to the fore and frees us from working within some of the constraints we are all aware of in the NHS and elsewhere.

Macmillan provides expertise in all things that affect people affected by cancer, for example, the latest clinical developments, support and information, volunteering, healthcare environments, well-being, workforce strategy and carer support; they believe that no one should face cancer alone. Macmillan will not be contracting the prime providers, that will be the CCGs and NHS England, they are there as facilitators and advisers. Nor does Macmillan want to bid to be the service integrator.

Our mission is to improve patients’ experience of cancer and end of life care services by coordinating each step of the patient journey.