Melanoma UK is pleased to share the Melanoma Patients Matter Report and the Patient-Doctor Discussion Guide which have been published by the pharmaceutical company Bristol-Myers Squibb. 

The NHS is committed to patients being at the heart of everything it does, and specifically ensuring patients are at the centre of any and all decisions made about their health.

A diagnosis of melanoma often significantly changes a person’s life, so it is important that patients are informed, supported and empowered to make decisions that are right for them and give them the best opportunity to lead the life they want.

Actively involving patients in their own care, treatment and support can lead to improved outcomes and experiences (1)

To understand how melanoma patients are being involved in these decisions about their care and treatment Melanoma UK was invited by Bristol-Myers Squibb to share our experience and expertise in shaping the project and resulting report, alongside the British Association of Skin Cancer Specialist Nurses (BASCSN), Melanoma Action and Support Scotland (MASScot) and Melanoma Focus.

The views of patients with stage three or stage four melanoma across the UK were sought, and found:

• Only half of patients feel they completely understood their diagnosis and the nature of their illness, as explained by their doctor or Clinical Nurse Specialist (CNS) at diagnosis

• Only half of patients have found the information provided on treatment options to be ‘completely’ sufficient to make an informed choice

• Two thirds of patients have not been given a personalised care plan and, of those who have been, 20 per cent of these patients report not having been involved in its creation

• Nine in ten patients have been given the name of a Clinical Nurse Specialist (CNS) to support them during treatment, and nine in ten patients have found it relatively easy to contact their CNS. However, the extent to which patients have found their CNS is able to support them varies significantly.

To ensure that all patients have the opportunity to be involved in their treatment and care, the report sets out a series of recommendations focused on improving the experiences of melanoma patients, including:

Clear, accessible information and support about a patient’s diagnosis and all treatment options, must be provided as early as possible in a language and format appropriate for each patient to enable them to make informed decisions about their treatment and care

Patient decision aids must be made available to advanced melanoma patients, so they can explore the available treatment options with their healthcare professional and reach a decision on the treatment and care that is right for them

There must be a focused effort to expand the melanoma CNS workforce across the UK to ensure that all patients have access to a named CNS, irrespective of where they live and where they receive treatment

NHS England should ensure melanoma is an early adopter for the standardised roll out of care plans in cancer care

NHS Scotland should consider introducing the concept of a personalised care plan to support melanoma patients’ input, understanding and expectations of their individual treatment and care

The Melanoma Patients Matter Report, and the Patient-Doctor Discussion Guide published by Bristol-Myers Squibb, are based on the results of the patient survey carried out in September 2018.  Melanoma UK would like to thank all of our supporters who responded to this survey for kindly sharing your insights and experience of living with melanoma, and helping to identify key areas for improvement in care and support for melanoma patients.

Melanoma Patients Matter Report

Patient Doctor Discussion Guide

(1) NHS England, Involving people in their own care. Available at: https://www.england.nhs.uk/ourwork/patient- participation/. Last accessed: January 2019