Cancer Plan for Children and Young People in Scotland 2012-15

Foreword

I am pleased to introduce the first ever Cancer Plan aimed specifically at children and young people in Scotland. Investing in the future of Scotland's children and ensuring they have the best start in life and are able to fulfil their potential is cornerstone of our policy.

Every year a small number of children and young people are diagnosed with cancer. Our services must ensure these children and young people attain the best possible outcomes and have access to appropriate specialist services, as locally as possible, that are both safe and sustainable, supported by consistent pathways of care, regardless of where they live.

It has long been accepted that there should be a single service for children and young people with a diagnosis of cancer in Scotland. In April 2011, I established the Managed Service Network (MSN) for Children and Young People with Cancer for Scotland and charged that Network with delivering our vision for cancer services. This Cancer Plan for Children and Young People in Scotland is the first important stage in delivering that vision and sets the priorities for the next three years. I will expect NHS Boards and individual clinicians to work with the MSN to deliver the best possible patient care and establish a service in Scotland that is the best in Europe.

Nicola Sturgeon, MSP

Deputy First Minister and Cabinet Secretary for Health, Wellbeing and Cities Strategy

"All changed, changed utterly" ^[1]

The implications of a diagnosis of cancer in a child or young person are enormous. Life for that child or young person and their family will never be quite the same again. For the child or young person, the immediate future is occupied with months and years of tests and treatment, in a hospital environment initially strange, but one that will almost become a second home. Parents and young people want to know, what will happen, when it will happen, who will do it, where will it be done, will it be the best that is available them, and of course, the initially unspoken, what are the chances of survival? Families and friends all want to support to ensure that the best happens.

For the clinical carers, the many different clinicians, including surgeons, oncologists, haematologists, radiologists, pathologists, nurses, therapists, pharmacists, psychologists and physiotherapists; all want to deliver for each child and young person and provide the best available care that our system allows.

The MSN for Children and Young People with Cancer has a single purpose, to ensure delivery of the "best available" for each child and young person with cancer through structures and processes that enable the best possible outcomes; and to do that by fostering a patient centred culture of integration, collaboration and support, as well as developing the abilities of the workforce. It will draw on the unfinished business of the last 10 years of planning and investment in specialist services for children and young people through the National Delivery Plan^[2]. It aspires to go beyond the substantial developments made by the managed clinical network, CATSCAN, and build on the recurring investment of an additional £3.2 million in cancer services for children and young people in Scotland.

This plan intends to foster easier and earlier access to services, ensuring that every child or young person is diagnosed promptly, that experts formulate the right care plan, at the right time and it is easier for everyone in the system to communicate and collaborate, making sure that the care is as safe as can be expected from drugs that are powerful and surgery that is major and radical.

This plan is not about the specific treatment regimens that will be applied to each disease within the spectrum of paediatric cancer, although that will be absorbed within it, but it is about production of a system that delivers and builds on an organisational culture which utilises the most expert opinion and skill base, the most timely investigation protocol, the best informed treatment policy and the family support for every child and young person with cancer in Scotland. It is a plan for a system that spans across Scotland, and ensures equity of care irrespective of residence, that plans care for those who need to travel beyond our national boundaries for rare cancers and very specific treatments; that plans to care for those where the nature of the illness dominates over the ability of the treatment and where supportive palliative care is needed.

The MSN will make that happen and importantly will ensure that it realises how it can happen. The plan will make certain that each child and young person newly diagnosed with cancer in Scotland gets individualised care guided by the most recent knowledge of research and clinical trials and will achieve that by investing in its workforce and enhancing research and development, educational opportunities for staff, and ensuring that communication across Scotland happens easily. We need to build a system that is intelligent and informed, a workforce that is resilient and sustainable, and care pathways from start to finish that are vigilant and allow the earliest diagnoses, detection of problems as soon as they appear and find a resolution. We intend to invest in academic and research profiles that will bring Scotland to the leading-edge of cancer care for children and young people by developing standards of care informed by international models that have something to offer Scotland. The network will plan for each case, learn from all new experiences, invest in its workforce and aspire to deliver excellence in clinical care in a consistent fashion for all Scottish children and young people with cancer.

When we were appointed as the co-Chairs for the MSN in April 2011, we identified, through a series of visits to centres and discussions with stakeholders, how the MSN could achieve these objectives to establish a single service for Scotland, which transcends NHS Board boundaries but still ensures local ownership and we identified a number of key themes to be addressed. These include Leadership, Service Delivery, Health Outcomes and Measurement, Interfacing, Transitions and Resources. Our Cancer Plan for Children and Young People identifies what we need to do to make this happen.

The Cancer plan therefore is about constructing a system that enables the best people to provide the best care for the best outcomes.

We commend our plan to you.

Prof George Youngson CBE,
MSN Co-Chair

Dr Iain Wallace,
MSN Co-Chair