Children's cancer charity welcomes recommendations to improve NHS

CLIC Sargent welcomed Tuesday’s NHS Future Forum report and its focus on integrating services as the key to improving the care young cancer patients receive. The charity described the recommendation that every patient with long-term and complex needs has easy access to a named person to co-ordinate all of their care as ‘vital’.

CLIC Sargent, which is piloting a key worker led model of care with the Royal Marsden Hospital1, said that building care around what cancer patients need both in and out of hospital is at the heart of what it aims to provide for children and young people in partnership with the NHS and other organisations. The charity’s Chief Executive, Lorraine Clifton, says: “The NHS Future Forum report is an important contribution to improving the way the NHS supports people with complex or long-term needs like cancer. Children and young people with cancer shouldn’t have to battle with the system.

“By offering a fully coordinated care package children and young people with cancer can spend more time at home safely, keep up with their everyday lives, continue in education or work, and go on to live their life to the full. We look forward to working with the NHS and other organisations to make the Forum’s recommendations a reality, particularly looking at how our Nurse Key Worker pilot can contribute to improving care for young cancer patients throughout the UK.”

CLIC Sargent has been able to establish key worker roles across the UK thanks to funds raised by its Tesco Charity of the Year Partnership in 20102. Jane Cope, CLIC Sargent specialist nurse key worker, says: “A cancer diagnosis affects the whole family, and can turn their world upside down. My aim is to help reduce the disruption that cancer brings, by being the link for the child and family between hospital and home, as well as supporting the GP and school.  As a specialist nurse key worker, I can help families to make sense of the maze of things they need to consider through diagnosis and treatment, and help them to maintain as normal a life as possible.”

The report highlights CLIC Sargent’s work in its foreword, in which Professor Steve Field refers to a meeting hosted by CLIC Sargent at Birmingham Children’s Hospital NHS Foundation Trust to highlight the way the two bodies coordinate clinical support at hospital with support in the community and work with schools, GPs and other organisations. This process reduces disruption and ensures that children and young people with cancer, and their families, have all the support they need to keep up with all areas of their day to day lives during and after cancer treatment.

The foreword says: “At Birmingham Children’s Hospital we found a hospital working in partnership with a charity [CLIC Sargent], local schools and colleagues in primary and social care. We saw the key role that the charity played in commissioning services and in providing care. The hospital’s integrated and holistic approach puts children and their families at the centre of the system”.

CLIC Sargent provides financial as well as emotional, practical and clinical support, to reduce the impact that cancer has on children, young people and their families. The charity supported more than 6,500 young cancer patients last year, and additional support was provided through the charity’s Information Service, Homes from Home and holidays.

he NHS Future Forum report covers four key areas: integration, information, the NHS’ role in promoting public health, and education and training for healthcare staff. The report can be found at http://healthandcare.dh.gov.uk/forum-report/

1. CLIC Sargent secured funding from the Department of Health and the National Cancer Action Team to pilot and evaluate the key worker led model with the Royal Marsden Hospital.

More Than My Illness: Delivering quality care for young people with cancer is the second of two reports by CLIC Sargent which examines the non-clinical needs of children and young people with cancer. This report focused on young people aged 16 to 24, and the first in the series focused on the needs of children aged 0 to 18, and their families. The

The full report is available for download at http://www.clicsargent.org.uk/Whatwedo/MoreThanMyIllness

2. Using funds raised through the Tesco Charity of the Year partnership, CLIC Sargent has developed paediatric oncology outreach nurse specialist and clinical nurse specialist roles, at each of the 18 principal treatment centres, so that they encompass more fully the key working responsibilities described in More Than My Illness.