Quality care for people with mesothelioma during the COVID-19 pandemic and beyond

Mesothelioma UK's head of nursing describes the challenges facing the charity supporting people with this asbestos-related cancer

Picture shows an older woman in bed, wearing an oxygen mask, talking to a medic. Lorraine Creech describes the challenges facing the charity supporting people with mesothelioma
Picture: Alamy

I was recently appointed the first head of nursing for Mesothelioma UK, the national asbestos-related cancer charity. Previously, I was one of three team leaders for the charity’s 26 clinical nurse specialists (CNSs) .

Mesothelioma CNSs demonstrate advanced nursing practice, are clinical experts and a professional resource for patients, carers and the multidisciplinary team. They ensure the delivery of high-quality, clinically effective care and advocacy, and prioritise the needs of the patient.

A CNS is alongside the patient as they navigate the pathway from diagnosis and treatment, throughout clinical trials or to end of life care. The CNS also carries out a brokering service of ‘opening doors’ for communication, support and signposting. All of these are vital to the physical and psychological well-being of the patient.

‘Clinical trials and patient-related research are the way forward in improving the treatment and care of people with mesothelioma’

Treatment for mesothelioma is changing all the time. Not only do we have the standard chemotherapy, we also have many clinical trials that have been undertaken, are in process or are awaiting outcome reports. These have included different drug combinations, immunotherapy and other targeted therapies. 

Some of the trials are also looking at the different modalities of treatment. For example, the MARS2 trial is examining the benefit of the surgical operation extrapleural decortication combined with chemotherapy versus chemotherapy alone.

There can be no doubt that clinical trials and patient-related research are the way forward in improving the treatment and care of people with mesothelioma.

Hope to establish more mesothelioma clinical nurse specialist posts

The treatment and care of patients with peritoneal mesothelioma is also improving, and the National Peritoneal Multidisciplinary Meeting has had an effect on this.

As Mesothelioma UK develops, it is important to continually evaluate our structure. The role of head of nursing has been created to enable a reporting mechanism and is accountable to the chief operating officer/head of services. The holder of this post is responsible for the professional nurse leadership of Mesothelioma UK, and will develop service strategies, ensure delivery of targets and foster a positive partnership across our CNSs, the operational team, and external agencies and NHS organisations.

To be at the helm of the expert CNS service is such a privilege as we continue to support mesothelioma patients, their families and the NHS. Going forward, we would like to establish a mesothelioma CNS post in each of the Cancer Alliances in England and increase our footprint in Wales, Scotland and Northern Ireland. Among other projects, I will be working on a plan to achieve this goal.

Other priorities are to lead nursing staff in developing appropriate changes to practice in keeping with the service-level agreement between their host trusts and Mesothelioma UK, and to promote a common vision and ownership of Mesothelioma UK’s values.

Drive up nursing standards and access to treatment

Alongside the CNS team leaders, my role is to support Mesothelioma UK nurses to drive up standards and equitable access to world-class treatment, trials and care. We have very strong links and communication channels allowing us to do this. Mesothelioma UK and I will continue to look where best to place new posts and where the infrastructure, support and expertise they require can be provided.

The nursing team is continually reviewed via a service level agreement between Mesothelioma UK and the nurse’s employing trust.

I will also continue to be integral in the planning and delivery of the Mesothelioma UK CNS professional forum, held three times a year. I will endeavour to be a conduit for delivering information to the nurses and believe this to be key to our success as a team.

‘Many treatments and follow-up regimes have been changed and it is important that patients and carers are informed of the reasons’

The COVID-19 pandemic is obviously a very challenging time for everyone, and I’m immensely proud to be a nurse and witness how the NHS and other care authorities have responded. Some Mesothelioma UK nurses have been redeployed to use their skills in different areas such as intensive care, palliative care and in wards.

They have all changed their practices as we try to reduce footfall in hospitals to promote safety, especially when patients are vulnerable and on the shielding list.

A large amount of support has had to be delivered via phone consultations and video links. We know this cannot replace the face-to-face contact that offers so much reassurance, but we are endeavouring to make sure that patients and relatives feel informed and supported, and that any queries and concerns are addressed.

Many treatments and follow-up regimes have been changed, and it is important that patients and carers are informed of the reasons for these changes. It is also important that patients continue to report new or changed symptoms to enable the mesothelioma nurses to assist with these.

Nurses will need support, particularly psychologically

Beyond the COVID-19 pandemic there will be tremendous challenges as services have a period of stabilisation and treatments that have been altered recommence. Obviously our first concern will be for our patients, but in addition I think our nurses will need support, particularly psychologically. But I feel sure that as a team we will be able to address this.

As a charity we may have funding problems going forward, which could affect the development of new roles. Our income has been affected as crucial events and fundraising activities have been cancelled in the interests of safety and public health.

Despite this, Mesothelioma UK staff, trustees and nurses are committed to continuing our work with patients, carers, families, support groups, fundraisers and other healthcare professionals to develop the work of the charity and improve treatment and care for patients.

Picture of Lorraine Creech, head of nursing for Mesothelioma UK, who describes the challenges facing the charity supporting people with mesotheliomaLorraine Creech, @CreechLorraine, is head of nursing at Mesothelioma UK

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