Trusts and Grants

Ocular Melanoma UK was founded by our CEO Jo Gumbs after her father died from this cancer in 2009.  She met another lady, Kathryn, who also lost her dad to this cancer, and together, they set out to ensure there was more information and support in place for other patients and families. 

They soon arranged the UK’s first-ever ocular melanoma conference in 2011, which brought people together and allowed them to hear from specialist speakers on crucial aspects of this disease.  Ocular Melanoma UK has grown year on year and has always focused on providing up-to-date information and alleviating the isolation patients and their families feel.

We are the only UK organisation dedicated solely to this cause, and people value the support we offer through our Helpline, our online forums, annual conferences, and importantly, the funded specialist psychological support we offer patients and their families.  We maintain strong relations with other cancer charities such as Cancer 52, useMYdata and Melanoma Focus, and we received referrals from larger organisations such as MacMillan and the clinical teams supporting people with this cancer. 

We are registered with the Fundraising Regulator and members of the Helpline Partnership.  Last year, we became certified with PifTick as a trusted health information provider, so we could produce high-quality patient information booklets as there was so little information available to people. 

Our organisation is driven by a small yet passionate team of four individuals, each contributing unique skills and dedication to our mission. 

Jo, our Chief Executive Officer, has personal experience of the difficulties faced by people and has grown our charity so more people can benefit from the support we provide, and is working to improve the data collected on this rare cancer so that decision-makers understand the impact the cancer and treatments have on people.  She is passionate about people having access to treatments that could extend people’s lives and works to ensure the patient voice is included in our work, internally and externally, especially when NICE or SMC reviews ocular melanoma treatments.   

Our Helpline Advisor, Matt, brings vast experience as an operational manager within various areas of the NHS urgent and emergency care services, triaging calls and working as an emergency call handler.  

Nicolette, our Office & Accounts Administrator, keeps our organisation running smoothly, onboarding new members, thanking our donors, maintaining records of all financial transactions.

Alex, our Head of Fundraising & Marketing, oversees all aspects of our fundraising efforts and is continuously working to expand our income through innovative and strategic fundraising initiatives. Alex also manages our marketing efforts, ensuring that our campaigns are impactful, engaging, and aligned with our overall mission.

In addition to our core team, we are also supported by our local ambassadors and our board of trustees.  After a pilot last year, we recruited three local ambassadors who arrange community meetups in their local area.  This allows people in those areas to meet others with this rare cancer and has helped to form additional peer-to-peer support, so we have plans this year to work with more local ambassadors and increase this service to more parts of the UK. 

These meetings are arranged by volunteers but supported by our team, so safeguards are in place.

Our board of trustees play active roles as they all have a connection to this cancer, either as a patient or by knowing someone who has/had this condition.  Our previous chairperson was the exception, as he was a highly specialist liver surgeon working in this field and one of the first people we met who showed us how an organisation could make a huge difference to people with ocular melanoma.  He has now retired professionally but continues with us as a trustee.  He brings a wealth of knowledge and passion and always strives for patients to receive the very best care with his unwavering ‘patient first’ approach.  

Our board and CEO meet every three months and are in regular contact throughout the year.  Together, they ensure all financial procedures are reviewed, that high levels of governance are in place and that we are focused on delivering projects that have the most impact on people.   

Ocular melanoma is a rare cancer, so our members tell us it helps to talk to people who understand it, its impact, and their unique needs.  Having support in place at an early stage is incredibly valuable to anyone with a cancer diagnosis, but with a rare cancer that will be terminal for one in every two people and affects their sight, people can struggle without the right network around them.  

Our Wellbeing Support Service began in 2011 with the launch of our dedicated Helpline and online community.  In 2019, we launched our psychological support service and began holding virtual community support meetings the year after.  

The psychologists we work with are highly specialised in this cancer, as our community values having experienced people supporting them.  This specialised service was only offered at one of the four hospitals that diagnose and treat ocular melanoma, so we worked with them to develop a service where people throughout the UK could receive this specialist support.  Thanks to our donors and fundraisers (and the National Lottery during the pandemic), patients and their loved ones have received up to six funded sessions through Ocular Melanoma UK.  We find the uptake is higher on initial diagnosis, and if they learn their cancer has spread, and are grateful they learn skills to help them through these difficult times. 

One person told us, “My psychologist understands what ocular melanoma is and how it can be treated.  Her knowledge was so useful.  The hospital gave me basic info and the headlines of diagnosis and treatment, but she helped me begin to more fully process what OM might mean for me.  Counselling offered me a private place to grieve and adjust without fear of other people’s reactions or perspectives.” 

Ocular Melanoma UK has always connected people as we needed to address a huge sense of isolation in our community.  One of the hardest aspects of this cancer is knowing that you are one in 6 or 7 million people with this rare and potentially aggressive cancer that may rob you of your sight and your future health.  Treatments tend to follow soon after diagnosis, and people can feel they are on a rollercoaster they can’t escape, so adjusting emotionally can be challenging.  Our staff and volunteers administer our online groups, which have become a safe place for people to share thoughts and ask questions at any time of day or night. 

Another person told us, “It was extremely beneficial to me.  It really helped me to get things in perspective and gave me invaluable tools to cope further down the line.  I’ve used this service twice, and on both occasions, it meant I had someone to talk to who truly understood.”

In addition to the support we offer, we bring people together for two days each year at our conference.  People travel from around the UK to attend, learn more about this cancer, and how to live with the impact it has.  These meetings have been described as ‘food for the soul’ as meeting others in real life can be life-changing as the general public does not widely understand ocular melanoma.  People say they feel better about being in a room with people who just ‘get’ how they feel.  

We have developed services that improve the patient experience, but we have more to do and need to grow our team to reach and support more people diagnosed with this cancer.  

Early detection is crucial in this cancer as smaller tumours are much less likely to spread.  Our annual eye patch campaign works to improve this, and we are talking to our clinical advisory panel on how best to remove some of the stigma around reaching out for help, especially once advanced cancer is found.  We have built sound foundations and are keen to ensure more people have the support they need.  

As a small team, our CEO and Head of Support have consistent input from our community on their difficulties.  Before embarking on new projects or services, we always ask our community for their thoughts by simply asking a question in our forum, sharing a form or inviting people to focus sessions to gain a deeper understanding of what would be needed.  We also get to know people well, so we may sometimes approach people with experience in certain areas.  For example, last year, we worked with NICE as the patient organisation involved with appraising whether a new drug should be made available.  To represent the ‘patient voice’ correctly, we ran surveys, spoke to people and their loved ones who had received the drug through the clinical trials, and talked to others who may need it in the future.  We then asked a patient who was a retired pharmacist to attend the committee meetings as she would have been familiar with the terminology used in these meetings, and we were mindful that other patients might have found the terminology quite cold and distressing.   

Our Helpline & psychological service are regularly reviewed, and they only came about as they were services suggested by the community we serve.  More recently, we held focus groups to determine the need for patient literature, and our members helped us prioritise which booklets were needed the most.  We have a variety of patients, loved ones and clinicians working with a medical writer to ensure all the content is relevant, as community feedback is also a vital component of Pif-Tick adherence.  Once each booklet is drafted, we share it with people in our online forum to build in their feedback before it goes to print, and we will do the same in 2 years when these booklets are due to be reviewed.   Our Helpline Advisor also produces a quarterly report on the types of calls we receive, so we all have a good sense of people’s questions and difficulties.

As a small organisation, we will need to recruit additional staff and volunteers, but for now, we have planned services that need minimal resources.  An example of this is an app used by NHS trusts to monitor people’s quality of life and gives patients control over wellbeing services and information.  Once the next set of patient booklets are finalised, we have arranged for our literature and resources to be loaded onto this app so that people have ocular melanoma-specific information to hand. 

We also have plans to recruit a patron to help us elevate the awareness around this cancer, and we are preparing to recruit an experienced fundraiser to help us grow our charity and make use of opportunities such as Free Wills Month, as we haven’t historically encouraged legacy donations due to the sensitive nature of this cancer. 

Over the years, this service has been funded through donations and fundraising efforts, as grant funding wasn’t an area we felt experienced in.  We now have a list of trusts that can support our work, and although we feel more comfortable securing funds, we are dedicated to growing our experience in this area.  

Ocular Melanoma UK is committed to equity, diversity, and inclusion (EDI) across all operations, specifically focusing on delivering our Wellbeing Support Services Programme.

Our approach ensures our services are accessible to everyone irrespective of location, socioeconomic status, or background.  This includes offering digital resources for remote access and organising in-person events in various locations. 

When we plan any in-person events, we often secure funding to cover people’s travel costs as we appreciate that having a rare cancer already involves significant travel costs when attending specialist centres for treatment. 

We tailor our support to meet the diverse needs of our community, providing materials in various formats.  Inclusive decision-making is a cornerstone of our strategy; we actively incorporate feedback from community members into our operations, ensuring our services are community-led. 

Our team receives EDI training, enhancing their ability to engage respectfully and effectively with all community members.  We understand individuals may face multiple forms of discrimination and tailor our support to address these complex needs, including providing or referring to specialised services when necessary. 

Our services are offered to people throughout the UK, but mostly remotely, so they are accessible to more people, eliminating the need to travel.  As a small team working from home, we keep our carbon footprint low and have taken steps to reduce the plastic waste we generate.  We are committed to continuous improvement in our environmental practices and appreciate the Fund’s guidance on reducing our environmental footprint as we integrate sustainability considerations into all aspects of our work.  

As mentioned, we have strong relations with other organisations, but Ocular Melanoma UK is an independent UK-registered charity and not part of any larger parent group or entity.  

We make strategic and financial decisions independently as an organisation, and we are responsible for all of the services described in this document.  Ocular Melanoma UK has its board of trustees providing oversight and our Chief Executive Officer leading our day-to-day operations. 

Our resources are utilised by the four main ocular melanoma centres in London, Sheffield, Liverpool, and Glasgow, hospitals that treat metastatic tumours, regional Macmillan cancer centres, and clinical nurse specialists.  This wide distribution of our materials showcases our significance as a trusted provider of medical health advice, further reinforced by our PIF TICK accreditation.