Table 1

Recommendations for a patient-centred mesothelioma follow-up care pathway

Recommendation 1: all patients have access to a mesothelioma specialist nurse within a respiratory led mesothelioma care pathway.
  • Each trust should have a named mesothelioma specialist nurse. Given the limited number of mesothelioma specialist nurses, this will not be feasible immediately at every trust. In this case, expertise should be concentrated in tertiary centres, with early referrals being made so that all patients can be seen at these centres at the first opportunity if they wish to do so.

  • Mesothelioma specialist nurses should be embedded within the wider lung cancer clinical nurse specialist community to promote joined up working practices, shared specialist knowledge and improved communication. If it is not feasible to have a mesothelioma specialist nurse at each trust, then a mechanism by which mesothelioma specialist nurses are linked with, and provide support to, lung cancer clinical nurse specialists should be established. This may include attendance at conferences and meetings, development of training resources and delivery of teaching sessions.

  • Each trust should have a named respiratory consultant who has sufficient knowledge and training in mesothelioma. If it is not feasible to have a respiratory lead who has specialist mesothelioma experience at each trust, then expertise should be sought from tertiary centres. This can be facilitated by linking with the regional mesothelioma MDT. The mesothelioma care pathway should be led by the respiratory team at each trust to ensure consistent oversight of symptom management, treatment and follow-up.

  • All patients should have regular and consistent follow-up with their respiratory team and access to a named mesothelioma specialist nurse or linked lung cancer specialist nurse regardless of the stage of their follow-up pathway.

  • All patients should have access through their respiratory teams to pleural services for the management of pleural effusions and in dwelling pleural catheters.

  • A shared care pathway between respiratory and oncology teams should be established at each trust.

  • All patients should have access to a named mesothelioma specialist nurse at the point of diagnosis to ensure that they are provided with up-to-date, evidence-based information about symptom management, treatment options, care pathways and available local and other support services. To ensure this, an early referral needs to be made by the consultant to the mesothelioma specialist nurse prior to the diagnosis of mesothelioma being communicated to the patient.

  • All patients should be provided with a named contact(s) to call inside and outside of working hours, regardless of the stage of their follow-up pathway.

  • A regional mesothelioma MDT should be introduced as a central component of patients’ care pathways to ensure collaborative decision-making across the shared care team (namely, consultant and specialist nurse, respiratory team, oncology team and palliative care). Regular feedback on the outcomes of discussions at the MDTs should be provided to patients.

Recommendation 2: timely information regarding diagnosis, prognosis and follow-up care is provided in a supportive environment.
  • An assessment should be carried out to determine the level and type of information regarding diagnosis and prognosis that the patient requires and is comfortable with.

  • Patients’ understandings regarding diagnosis, prognosis and follow-up care should be checked at initial and follow-up clinic appointments.

Recommendation 3: Patients are equipped with necessary information to guide treatment and care decision making
  • All patients should be provided with comprehensive information about the range of treatment options available to them across the NHS, privately, and via clinical trials.

  • All eligible patients should be offered information and opportunities to participate in clinical trials at a regional and national level.

  • All patients should be provided with sufficient information about different ways of accessing treatment, including funding for travel and treatment costs.

  • The respiratory team and mesothelioma specialist nurse/linked lung CNS should maintain continued involvement in patient care even if the patient accesses treatment outside the NHS privately or transfers onto a clinical trial

  • Patients should be provided with a clear information about who will be involved in their care and what their care pathway will look like at individual trusts. This should take into account how care will be conducted in multi-site trusts (eg, location(s) of clinics, travel arrangements, etc), and reasons why care may involve being seen by different members of the healthcare team and at different locations. This should be tailored according to individual patient circumstances.

Recommendation 4: Streamlined integration between secondary, palliative and community care services
  • Patients should be provided with an early referral to palliative care services, including access to a specialist pain management team.

  • Following a referral to palliative care services the mesothelioma specialist team should maintain continued involvement in patient care regardless of the ratio of secondary to palliative care involvement in follow-up support.

  • A simplified referral process should be put in place to allow direct referral between the mesothelioma specialist team and the palliative consultant and/or nurse.

  • The rationale for early engagement with palliative care services should be clearly explained to the patient.

  • There should be regular communication between mesothelioma specialist nurses, respiratory, other secondary, and palliative care teams to provide updates on shared caseload.

  • There should be regular communication between the mesothelioma specialist nurses, respiratory teams and community care teams (eg, district nurses and General Practitioners) to provide updates on shared caseload.

  • Information, education, and training should be provided to community teams about current evidence around treatment and care of patients with mesothelioma.

Recommendation 5: Patients are provided with appropriate information resources from diagnosis throughout their care pathway
  • Patients should be provided with a mesothelioma information pack containing relevant information about the disease, treatment, support services, the trust, and the mesothelioma care pathway. This should include the main contacts for the respiratory team and the named mesothelioma specialist nurse.

  • The mode of delivery of information should be tailored to individual patient preferences/requirements, particularly regarding the provision of information electronically.

Recommendation 6: Facilitate personalised care links between secondary care and community support services
  • Relevant support groups available to patients and their families/carers locally and elsewhere (eg, online) should be identified and signposted. The benefits to patients and their families/carers of engaging with support groups should be clearly explained.

  • Relevant organisations and support available to provide support with benefits and entitlements for patients with MPM should be identified, signposted and linked with on behalf of patients.

  • Any other additional support services or practical information that may be beneficial to the patient should be considered and, where necessary, links with relevant service providers should be made.

  • MDT, multidisciplinary team.