HeadSmart: be brain tumour aware
by The Brain Tumour Charity
One quarter of all childhood cancers occur in the brain – 10 children and young people are diagnosed with a brain tumour each week in the UK – and they are the biggest cancer killer of children and young people.
Early diagnosis can save lives and reduce long-term disability but the average (median) time between symptom onset and diagnosis (symptom interval or SI) is longer in the UK than in many other countries.
‘HeadSmart: be brain tumour aware’ is a publicity and awareness campaign developed to bring about earlier diagnosis and improved outcomes. Against the primary goal of a reduction of symptom interval, the evaluation results showed a reduction in the median length of time to diagnose childhood brain tumours from 14.4 weeks to 7.5 weeks within a year of launch of the initiative. The latest figures to May 2013 have shown a further fall to 6.9 weeks.
"A very impressive and innovative project. Taking children to the doctor can be difficult, but the team overcame those barriers with a project that has shown consistent results over a prolonged period of time"
CLIC Sargent’s Young Person Community Worker Pilot
by CLIC Sargent
Young people (16-24 year-olds) with cancer face huge challenges during and after treatment, including interruption to their education or employment, financial hardship, anxiety, social isolation and the breakdown of relationships.
CLIC Sargent identified that there is little tailored support available, particularly if treatment is in local hospitals rather than specialist centres.
The charity piloted a new community worker role in five geographical locations to provide responsive, consistent and flexible support to young people, where they live or are being treated. It is tailored to their needs and respects their independence.
The pilot which was independently evaluated after 17 months, demonstrated that young people with cancer highly valued the support of the community worker, and provided new understanding of the needs of this age group.
Friends of the Beatson – improving the lives of patients with cancer
by Friends of the Beatson Centre, The Beatson West of Scotland Cancer Centre
Friends of the Beatson was established in 1995 to provide, in parallel to the Beatson Hospital, practical comfort and support for patients with cancer. It has raised over £3.2m for a variety of projects and in 2007 the state-of-the art Beatson West of Scotland Cancer Centre (BWSCC) opened. It is the busiest such centre in the UK.
The Centre is imaginatively designed and sees an average of 1,000 patient visits each month – all services are provided free of charge. The centre offers a relaxing and therapeutic environment with complementary non-medical services designed to enhance the well-being of patients during their hospital stay and treatment. In addition, our ward-based complementary services are available to those unable to attend the Centre and are of particular importance for palliative/end of life therapies.
The key measure of success is patient demand and feedback from patients and staff. In 2012 the centre delivered over 7,262 therapies compared to 1,460 during 2008.
Get back on track: A service to improve fatigue in prostate cancer
by Prostate Cancer UK
Get back on track is a joint project between Prostate Cancer UK and King’s College London that aims to develop, deliver and evaluate a telephone-based intervention for men experiencing prostate cancer-related fatigue during and after treatment.
It involves psychological support, self-care education and goal setting for behaviour change and is delivered by Prostate Cancer UK’s specialist nurses. They support men over 10 weeks, making four phone calls in that time, bringing around positive behaviour change to improve the patient’s ability to manage fatigue.
A randomised control trial demonstrates that this approach represents a sustainable model of intervention, which is acceptable to the patients and effective in producing positive outcomes.
Putting lung cancer on the map – information access for all
by Roy Castle Lung Cancer Foundation
The National Lung Cancer Audit (NLCA) is the UK’s most comprehensive review of lung cancer services. It has helped drive improvements in care by providing hospital trusts with vital information about how their performance compares to national standards and other centres. The data, however, has been in a format only accessible to healthcare professionals.
The Roy Castle Lung Cancer Foundation (RCLCF) worked in partnership with the NLCA team, the NHS Information Centre (NHS IC), Royal College of Physicians (RCP) and Healthcare Quality Improvement Partnership (HQIP) to make the information accessible to patients and their families.
RCLCF worked with these organisations to develop an interactive digital smart map that enables patients to review and compare information about lung cancer care across the UK. The digital map is now being used by the NLCA team as an example of best practice of how audit data can and should be used and made accessible to all.
Establishing a National Mesothelioma Resource Centre – Mesothelioma UK
by The University Hospitals of Leicester NHS Trust
Mesothelioma is a cancer caused by exposure to asbestos and the UK’s rising annual incidence of 2,500 cases is the highest in the world. Until recently there has been very little research, evidence-based treatments have been lacking and there is a frustrating variation in clinical opinion and limited access to emerging treatments.
Macmillan Cancer Support awarded a grant to the University Hospitals of Leicester to establish a National Mesothelioma Resource Centre. This now provides a free phone helpline (1500+ calls per year), a dedicated website, a quarterly newsletter, training and education opportunities and, in collaboration with the Royal Marsden, the only accredited mesothelioma course in the world.
More recently the charity has provided funding support for six nurse specialists and a Community of Practice has been established for other specialists to develop insight and knowledge. The resource centre is now considered an essential service within the national, and increasingly the global, mesothelioma landscape.