MAY IS MELANOMA AWARENESS MONTH

Join us in raising awareness by nominating your Melanoma Super Hero

HOW?

In recognition of Melanoma Awareness Month in May, we would like to honour our Melanoma Super Heroes. Throughout the month of May, we’re asking you to nominate someone who is your super hero.

We want this to include patients and survivors of this brutal disease, the loved ones we have lost to melanoma, friends and loved ones who have helped and supported our melanoma warriors through their journey.  We want to recognise our dermatologists, skin cancer nurse specialists who do such an amazing job, the oncologists & surgeons who have saved so many lives.  Everyone has a story to tell and Melanoma UK want you to share these stories throughout May.

 

Let’s make the month of May something special.  Get involved, recognise your Melanoma Super Hero on our website and show how amazing our melanoma family is.

MELANOMA UK NEW WEBSITE

Have you checked the brand-new melanoma UK website? It’s full of new and updated content about all the support available from Melanoma UK.

From treatment options to the sunbed ban petition and of course our digital study app, it is a great resource of information and support available to help you manage your condition.

You can also now set up your own fundraising directly on the website. Head to www.melanomauk.org.uk and find the information and support most important to you.

MELANOMA UK STUDY APP NEW FEATURES 

The Vitaccess team has been hard at work since our patients’ workshop in London last January.

Please make sure that your phone settings are on automatic updates so you can benefit from the last updates we have implemented.

Some bugs have been fixed such as our Terms and Conditions link and the scrolling up in surveys, as well as removing unnecessary symbols amongst other things. We remind you that we have also added new treatment options which we hope cover the extent of options available to you. 

DID YOU KNOW?

Participants in our Melanoma UK study self-report a mean health-related quality of life of 0.81 per the EQ-5D-5L instrument

Click this link to "how are you feeling today"

REMEMBERING BOB MARLEY

This weekend will be the anniversary for the King of reggae, Bob Marley who died of acral lentiginous melanoma. 

He was diagnosed of this rare form of skin cancer in 1977, spreading from under a nail on his big toe. 
He passed away on 11.5.1981 at the age of 36. He would have been 74 now. 

Melanoma does not discriminate so please make sure you check your skin - if in doubt, check it out.

For more information on skin checks follow this link

MELANOMA: LET'S GET UNDER THE SKIN OF IT is a campaign to encourage patients, loved ones, partners and carers to learn more about melanoma – whether recently diagnosed or simply hoping to learn more.

The goals of the Melanoma: Let’s get under the skin of it campaign are to help patients and their families:

  • Understand more about melanoma, from staging to treatments
  • Learn more about melanoma gene mutations, such as the BRAF mutation, and how these mutations affect treatment options
  • Communicate clearly with melanoma experts, with clear questions to ask and points to remember during appointments – to ensure you have all the information you need about your personal diagnosis

Visit the page on our website to access the guides. 

This month, Euromelanoma & Melanoma Research Foundation will be campaigning about denial about skin cancers including melanoma.

Research shows how denial contributes to skin cancer incidence and mortality rates.

However, the recent developments in melanoma treatments now ensure that skin cancer remains treatable, not terminal.

Watch Professor James Larkin talk about the progress of treatments in melanoma.  

How we are representing our patient community this month

1st May – London - ACC – Advanced Cancer Coalition meeting  

The ACC was created with the aim of exploring how improvements could be made to the quality of care & treatments for patients with advanced forms of cancer. 

6th May TBC – Bristol Myers Squibb will publish the results of the Patient Matters survey

Last year, you took the time to answer this survey and we thank you for your participation. We are now looking forward to hearing what the findings will be. 

9th May – Manchester – NICE conference

NICE is the National Institute for Health and Care Excellence (NICE) providing independent, authoritative, evidence based guidance and advice to improve health and social care.

“NICE 2019: Transforming care” celebrates 20 years of NICE’s commitment to innovation, excellence and evidence-based health and care.  

Bringing frontline staff and leaders from health and care together with the life sciences, healthtech and digital sectors, the event outlines NICE’s essential role supporting the delivery of high quality, fully-integrated, person-centred care. 

Diane Cannon will be representing the voice of the Melanoma UK patients.  http://www.niceconference.org.uk/

14th May – London – Chris Bryant Fundraiser

Chris Bryant MP was diagnosed with melanoma in the early part of 2019 and has chosen Melanoma UK as a recognised charity for his fundraising.

https://www.melanomauk.org.uk/news/chris-bryant-mp-fundraiser

14TH May – Scotland – SMC PACE meeting for encorafenib Braftovi

A busy day for the team that day. To not miss out on any opportunity to represent the members of our community, Diane Cannon will attend this meeting via webex so she can attend in person the Chris Bryant MP fundraising.

https://www.scottishmedicines.org.uk/how-we-decide/pace/

18th May – Liverpool – Lord Mayors Ball

Diane Cannon who is a Liverpudlian through and through will be attending Lord Mayor’s Annual Ball at Liverpool Town Hall.

https://www.liverpooltownhall.co.uk/events/lord-mayor-of-liverpool-annual-ball-2019/

21st May – London - AllCan Working Group Meeting

All.Can is an international multi-stakeholder initiative working to improve the efficiency of cancer care by focusing on what matters to patients.

http://www.all-can.org/national-initiative/uk/

21st May – London – Meeting with Matt Hancock, Secretary of State for Health and Social Care

Gillian Nuttall will be representing Melanoma UK alongside Chris Bryant & Pauline Lathom when meeting with the Secretary of State for Health and Social Care.

24th May – London – Roche Patient Involvement Meeting

As part of Roche’s work to put the patient voice at the forefront of health technology assessments (HTAs), Melanoma UK has been invited to attend the launch of the report: A review of patient involvement in HTAs

https://www.melanomauk.org.uk/Event/putting-the-voice-of-the-patient-at-the-forefront-of-hta