On Wednesday 8th February, 2017, the Sarcoma Patients EuroNet (SPAEN) launched a ‘Sarcoma Policy Checklist’ during a European Parliament debate taking place in Brussels to highlight rare cancers.

Estelle Lecointe, the chair of SPAEN and president of Info Sarcomes, presented at the debate to share and discuss key challenges for sarcoma patients. The debate was hosted by MEP Marlene Mizzi.

What is SPAEN?

SPAEN is an international network of patient advocacy groups for many forms of sarcoma; including bone cancer and soft-tissue sarcomas. The organisation work to support sarcoma research and improve patient information, support and care by working closely with researchers and clinical experts in the field across Europe.

Launch of the Sarcoma Policy

SPAEN developed ‘The Sarcoma Policy Checklist’ as a tool to help policymakers improve access to high quality information, care and treatment for sarcoma patients across Europe, while helping European countries learn from one another in how such priorities are implemented.

The Policy Checklist was developed by a group of experts and leading patient groups; such as SPAEN, Das Lebenshaus and Info Sarcomes. The checklist describes five key areas where policy makers may focus their efforts to make the most impact on care for patients:

  • Designated and accredited centres of reference for sarcoma in each country
  • Greater professional training for all health care professionals involved in sarcoma care
  • A multidisciplinary approach to care for every patient with sarcoma
  • Greater incentives for research and innovation
  • More rapid access to effective treatments

Read more about the Sarcoma Policy Checklist and its five key areas in more detail here.

This policy checklist highlights the key issues faced by sarcoma patients, who report some of the poorest experiences of all cancer types. The Bone Cancer Research Trust is dedicated to helping patients overcome these issues and we have many projects set-up in order to do so, such as:

  • Developing an e-learning module for GPs to increase their knowledge of symptoms and diagnostic pathways. As sarcoma can occur anywhere in the body, patients can present with a wide-range of symptoms and so it is crucial healthcare professionals are aware of these variances.
  • Sarcoma is not including on the general medical curriculum. The Bone Cancer Research Trust funds placements for junior doctors in specialised sarcoma centres to allow doctors to experience this setting and encourage top-scoring medical students to specialise in this field.
  • In order to encourage sarcoma patients to make informed decisions about their care and be aware of their treatment options, the Bone Cancer Research Trust provides in-depth information on all forms of bone sarcoma as well as clinical trials and those trials that are available for patients to participate in.
  • The Bone Cancer Research Trust encourages links between specialised sarcoma centres and the whole research community to increase collaboration, data sharing and knowledge.
  • Funding pioneering research into bone sarcoma is a key pillar of the work the Bone Cancer Research Trust carries out, working towards developing new, effective, treatments for patients.

We see the publication of the ‘Sarcoma Checklist Policy’ as a great step forward in advancing knowledge and promoting collaboration between the whole sarcoma community across Europe.