Developing and communicating effective pathways for patients with sarcoma in London and South East England

The rarity of sarcomas means that patients are often referred and diagnosed late, resulting in poorer patient outcomes. Patients can visit their GP several times before being referred to secondary care, and there can then be further delay before they are referred to a specialist sarcoma centre. Patients with sarcoma repeatedly report poor patient experience in the National Cancer Patient Experience Survey compared to the more common tumour sites.

To improve patient experience and outcomes people with suspected sarcoma need to be referred quickly to a sarcoma diagnostic centre and if a sarcoma diagnosis is confirmed they need to be referred to a specialist sarcoma centre for treatment. The two designated sarcoma centres in London shared a common objective to formalise and increase the awareness of pathways for patients with Sarcoma in London and the South East of England. The centres developed pathways as part of the Sarcoma Advisory Group work programme and distributed the pathways to primary and secondary care providers within the SAG catchment area. Key principals of the SAG pathways are that:

• Patients with diagnosed sarcomas have their care plan confirmed by a sarcoma MDT

• Patients with diagnosed sarcomas are treated at a specialist sarcoma centre or by designated practitioners/extended MDT members agreed by the SAG

Particular focus was given to the site-specific sarcoma pathways where little guidance had been communicated previously.

The London and South East Sarcoma Network (LSESN) was formed in 2007 following the publication of NICE Improving Outcomes Guidance for people with Sarcoma. The Sarcoma IOG recommended the establishment of managed sarcoma networks to be responsible for establishing efficient and effective pathways of care for all patients with sarcoma within their catchment area, from referral to treatment and follow-up.

The LSESN brought together two designated sarcoma centres: The London Sarcoma Service (Royal National Orthopaedic Hospital and University College London Hospital) and The Royal Marsden Hospital. The London Sarcoma Service hosts a bone and soft tissue MDT and serves over 150 new bone cases and 350 new soft tissue cases per year. The Royal Marsden Hospital hosts a soft tissue MDT and serves over 700 cases per year The London and South East Coast Specialised Commissioning Group worked with the LSESN to define the catchment population for the network which includes approximately 17 million residents within London and the South East of England.

At the time of the formation of the LSESN the catchment area covered 14 Cancer Networks. In the current structure the catchment population covers 6 Strategic Clinical Networks (SCNs): London, South East Coast, South West, Wessex, East of England and Thames Valley.

The LSESN Sarcoma Advisory Group (SAG) was formed with representation from the two sarcoma centres, as well as commissioners, patients and referring clinicians. The SAG has been meeting quarterly, alternating between UCLH and RMH. A simple gap analysis was carried out against the key recommendations in the Sarcoma Improving Outcomes Guidance (IOG) and an implementation plan was developed. Key actions identified were the development of patient pathways for bone, soft tissue and site-specific sarcomas and the designation of shared care practitioners for chemotherapy and radiotherapy.

The Sarcoma Advisory Group (SAG) developed pathways and guidelines for bone, soft tissue and site-specific sarcomas in line with national guidance, in particular the NICE Sarcoma IOG. The site-specific sarcoma pathways needed to be signed off by the chairs of the Network Site Specific Groups in each of the cancer networks in order to meet Peer Review recommendations. This posed a challenge due to the large number of stakeholders involved and the vast geographical location. There were 7 site-specific pathways and 14 cancer networks and so therefore a total of 98 agreements were required.

The development and consultation of the pathways reinforced the need to develop a communications policy and further build relationships within LSESN. An LSESN communication tree was developed to include sarcoma leads at the 62 Trusts within the LSESN. This communication list has recently been updated to reflect changes in commissioning structures and individual trusts. The sarcoma leads and other key contacts receive all communication from the SAG. Agreements of pathways were sought principally by email and in some cases agreements proved difficult to reach. The Chairs of the SAG and Sarcoma Project Manager visited some Trusts where it was felt further discussion was warranted. The SAG was required to designate practitioners for chemotherapy and radiotherapy – oncologists who would deliver care locally in consultation with the Sarcoma MDT at one of the sarcoma centres.

The SAG produced and agreed a list of practitioners along with supporting guidance and circulated this widely within the LSESN for consultation. An LSESN website was created in 2010, hosted by the Royal Marsden Hospital. The Sarcoma Project Manager and the web manager at RMH reviewed the content of the website and discussed its usage. Pathways, guidelines and policies were uploaded onto the website as well as papers from the SAG meetings. Regular emails were sent to SAG members, Trust Sarcoma Leads, Designated Practitioners and other interested stakeholders with ‘communication updates’ and links to recent updates on the LSESN website. All of the above stakeholders are invited to attend SAG meetings. Pathways and referral forms were circulated to primary care leads at the cancer networks for distribution amongst primary care. Communication on the pathways, referral forms and the LSESN website was included in local GP newsletters.

The introduction of the LSESN website and improved communication with our referrers appears to have increased engagement in our Sarcoma Advisory Group work plan. Pathways are being closely followed in some areas of our SAG population, however inconsistencies still exist. Due to the complexity of and number of pathways involved as well as the rarity of sarcoma, accurate ‘before and after’ figures are impossible to derive. The London Sarcoma Service has started to monitor compliance against the pathways in MDT meetings. There were 85 recordings of non-compliance in a 3 year period. Approximately 2300 patients were discussed at the MDT meeting during this time period and so this equates to a rate of 4%. The reasons for non-compliance were audited for a sample of 10 patients. Qualitatively, within the MDTs, non-compliance is felt to be less frequent.

Further work needs to be done to communicate these non-compliance issues with the referring Trusts and to ensure consistency of recording within the LSESN. The London Sarcoma Service plans to develop a standard letter which will be sent back to referrers for cases of non-compliance. This process will be piloted and then fed back to the SAG to explore whether RMH would like to adopt the same methodology.

Both centres in the LSESN audited their shared care practices and presented this at the SAG in 2012. The audits showed that very few patients are referred outside of the two centres for chemotherapy or radiotherapy and where they are this is because they live a long distance from the sarcoma centres. The radiotherapy audit showed that the pathway was longer for patients who had treatment outside of the sarcoma centres. The shortest and most appropriate pathway for patients receiving radiotherapy outside of the centre was when patients were seen by a sarcoma oncologist at the centre pre-operatively and then referred to shared care centre for post-operative treatment. The SAG plan to repeat this audit and also to ask designated practitioners to provide feedback on the service of the centres.

When developing any new guidance or pathways, early communication and engagement from all stakeholders within the sarcoma network is imperative. As most sarcoma centres will have a large number of referring Trusts covering a wide geographical area, the establishment of a shared website to store all documentation can aid communication.

Sustaining a work programme between Trusts and across a large geographical area requires resources to improve chances of success within a reasonable time frame. These resources are both administrative, technical (e.g. for web site hosting, development and maintenance) and the release of specialist clinical time Communication with primary care has proved more difficult recently following the new commissioning structure and the removal of cancer networks.

Opportunities to ‘narrow the gap’ between primary care and very specialised services must be continuously sought.