Melanoma: Working in partnership to improve patient experience

By Diane Cannon, Melanoma UK:

As we celebrate Patient Experience Week this April, it’s worth reflecting on the experience of patients with melanoma after diagnosis. Malignant melanoma is the fifth most diagnosed cancer in the UK, but people often don’t know much about it. As such, their diagnosis can come as a shock, and it can be hard to know where to turn for support and advice.

I got involved with Melanoma UK due to my personal experience with my niece. She was diagnosed with melanoma when she was 21. Then, in early 2013, she was re-diagnosed with advanced-stage melanoma. By that December, she’d died. She was only 38 years old.

During those 12 months, I took her to hospital appointments, and was shocked by how little support there was for melanoma patients.

When I went onto Dr Google to find out what advice was available, most of the information was negative and just added to a stressful time.

Later I was introduced to Gill Nuttall, CEO of Melanoma UK, who’d founded the charity following the death of a very good friend of hers. While my niece was sick, I helped with the support group and – for my sins – I’m still here, which is amazing.

Diane with her niece of her wedding day

As the No.1 patient support group for melanoma in the UK, we’re passionate about what we do. Melanoma is less well known about than many other cancers. Yet seven people in the UK die every day and they often don’t realise a melanoma may not be simple to surgically remove.

During COVID-19, especially, we’ve had patients coming forward to their GP at an advanced stage of the disease – because they didn’t go to have a mole checked out.

If caught early, melanoma is one of the most treatable cancers. So, education is important, and we need to work to empower patients. Part of that involves having the right tools so patients can be equipped with web-based and other educational materials to help them learn more about their stage in the disease’s progression and how to manage it.

Melanoma UK has recently started working with Cognitant. The Healthinote platform helps patients to find the information they need in one place from credible sources, (like Melanoma UK). As a result, GPs are able to give patients access to credible information.

An example of an information prescription for a person with melanoma

People don’t realise the importance the role of the GP in a melanoma diagnosis. When you go and see your GP, if  there is any doubt a patient will be referred to a see a skin cancer specialist.  This may result in a biopsy of the lesion, and then following a period of time you may need to go back to the hospital for a melanoma diagnosis. So, there’s a long period of waiting. Then, you might be given a leaflet, which is great for raising awareness, but – if you’re the patient – you want to know more than that.

It’s very tempting to Google to understand what melanoma might mean to you. Unfortunately in most instances, early-stage patients imagine themselves at the worst place possible – often because they’ve found a statistic on the web – and their anxiety level goes through the roof.

GPs are bombarded with information, so it’s important to find the right channel to help them out. That’s where Healthinote comes in. Through our partnership, GPs can now signpost a newly-diagnosed patient through the Healthinote platform to Melanoma UK where they can find a community of patients who know what they’re going through.

As a patient support organisation, we see digital education as the way forward. We used virtual platforms much more during the COVID-19 pandemic and saw how much interaction we had with patients and professionals. Web-based formats can be tailored to the most up-to-date information, and they’re easy to access from mobile phones or the internet.  They’re a great way to support both healthcare professionals and patients, and – by combatting misinformation – they bring massive benefits to both.

Diane Cannon is Corporate Partnerships Director at Melanoma UK.

To find out more about Melanoma UK, visit: www.melanomauk.org.uk

To find information about melanoma, or any other condition, on Healthinote, go to www.healthinote.com