Some of you may know Jo Gumbs, but for those of you that don’t, for #RareDiseaseDay we thought it would be good to hear from her on why OcuMel UK was founded and how she sees the charity developing.   

Jo has been our National Director for a number of years and our board of directors, recently changed her title to CEO to better reflect her role.  She is also a trustee of OcuMel UK, and although this has been agreed with the Charity Commission, she is looking to stand down from that role to give her some time back, and to have another family member take her place on the board. 

Jo, can you tell us a bit about yourself?

I’m 44 years old, a wife and mother to two growing boys and a step-mum to two very tall young men.  To say I am outnumbered when there’s a football game on TV is a huge understatement.  I love cooking, walking with my family, spending time with my mum, and I prefer the warm summers to cold winters.

My dad was diagnosed with Ocular Melanoma in 2007, not long after our wedding, and thankfully, a year later, my son, his first grandson was born.  His tumour was found late, and he lost his eye, but we never imagined that OM was about to have such an impact on our family.

In 2009, after multiple hospital visits, we got the news it had spread to his liver.  His cancer was too advanced, and we lost him later that year.  We were in shock, and to say his loss left a hole, would be another huge understatement.

My dad was incredible.  He was a man of few words, but he used them wisely, and he had a great gift of turning his hand to whatever he needed to so he could build a better life for his family.  I had always worked for a large company, and he couldn’t understand why or how I could be happy working for someone else.  We’d often argue as I’d try to explain that starting a business wasn’t easy nowadays, but he rarely listened and would tell me to “Just do it.  Find something you love, and just do it.”

As always, he was right, but I’d give everything for him to have been wrong.

How is Ocular Melanoma found?

My dad wore glasses and had regular eye tests, but when his new glasses didn’t help his vision, he kept going back to his local opticians.  They dilated his eyes, saw something suspicious and he was referred for further investigation.  

Dilating the eye opens up the pupil so the optometrist can see more of the eye.  Imagine cutting a small hole into a tennis ball to see the inside of the ball.  You’d see straight ahead, but a larger hole would help you see more of the ball and so if a tumour was growing, it’s more likely to be found.  

Depending on where the tumour is in the eye, means it may affect vision but it doesn’t always.  It is really important to report any changes with your vision, but also to encourage everyone to have regular eye tests.  These tests are more than a vision check, they check your health and they are for everyone, not just adults.  It’s important for children to have regular checks too.  Finding something early means it can be treated more effectively, so early detection really does save lives.  

Now I hear from people who experience flashes of lights, lava lamp effect, poor or blurred vision, their eyes began to look different, it becomes painful or they experience a loss of vision.  These symptoms can be due to other conditions and so it’s really important to have regular eye checks and to let them know if your condition doesn’t improve.

How has OcuMel UK changed over the past few years?

After we lost my dad, forgetting everything we had learned about OM didn’t seem an option and I couldn’t rest knowing that others were about to have the experience we did.  

I’d met other patients and family members in an American group, and I registered OcuMel UK in the hope we could help others.  Initially, this was on a small scale, and then when I met Kathryn Curtis, we shaped OcuMel UK into its current form and began seeing that we could help more people. 

The two of us headed to Southampton for a meeting with Mr Neil Pearce and Mr Brian Stedman.  They shared their thoughts on how we could take the charity forward.  It seemed like a few weeks when Kathryn announced that she’d arranged the UK’s first-ever Ocular Melanoma conference.  It was a major milestone for us.  

We focused on improving information and support, but after a few years, supporting people wasn’t enough.  We had to work to make improvements, and thanks to MPNE, I found a team of people to guide me on how OcuMel UK could have the most impact. 

I began learning about the stakeholders involved in drug development, how medicines are developed, how clinical trials are run, and what ‘bench to bedside’ really meant.  It was apparent that patient advocates had to be involved in every stage of the process to reduce delays that other cancer communities had faced.

We announced our decision to employ a Care Coordinator Nurse as we found it took time before people were in front of an oncologist who could help them.  We felt this person could support patients throughout the UK in navigating treatment pathways. 

By the time we mapped out the role, gained feedback and had enough funds, we successfully recruited just as covid hit.  We had found an amazing lady, but with the pressures that nurses were under, she could not join us.  We hoped covid would pass, and as we now know, it didn’t.  Our community was hit hard.  

Clinical trials were paused, and two of the main trials that people entered finished recruiting and closed.  Routine scans were affected, so we voiced our communities’ difficulties in monthly NHS meetings with other cancer charities. 

We began the recruitment process again for our specialist nurse and I am extremely pleased we found Reta Sowton.  Reta had even more oncology nursing experience than we had hoped for having worked with other cancer charities.  We have now employed our nurse and she is now our Medical Liaison and Head of Support Manager, helping us build our clinical community and develop clearer treatment pathways.  She has been a tremendous help behind the scenes, and as we have lots more to do in this area, I am incredibly pleased she is increasing her hours in 2022 as we certainly have a lot to get through.  

We have a great team in OcuMel, Nicolette and Emma are the backbones of our business and they make sure everything works.  We have two incredible volunteers Heather, Lesley and together with myself, we support people through our helpline.  We are a growing charity and we will soon employ a dedicated Helpline Advisor to support people on the phone and in our Facebook community. 

Through MPNE, I also started learning about new developments in the oncology world, such as Precision Medicine, how ctDNA could help patients, and I became involved in the Beyond One Million Genomes project.  From there, I joined the DATA-CAN on their Patient & Public Involvement and Engagement team, useMYdata’s advisory board, and the Get Data Out team at Public Health England as an Eye Cancer working group member.   These experiences have taught me an incredible amount. 

We know we need better medicines to help people, but we need to make sure our patients can access them once they are developed.  This was evident early in 2021 when we learned that NHS funding for Chemosaturation would not exist in time for many people.  We held various meetings with the stakeholders involved and supported NHS funding through the NICE review, so the committee understood how vital this treatment was for our community. 

Some of our patients were asking about funding the treatment themselves.  This would have been a significant cost to them, and so we wrote to all of the stakeholders and asked for costs to be reduced for self-funding patients.  Through these discussions, we were given a grant, which we used to offer these patients a patient grant towards the cost of their treatment. 

I have met some incredible people, and I am confident we are now best placed to learn of developments that can help our community.  Even though we are a tiny charity, we certainly hope we are making improvements for people with OM. 

 What is the most exciting development?

For me, knowing we have treatments within reach, makes me happy.  Most weeks have their difficult times, and as a patient advocate, I am driven to see what areas need improvements so my first response is usually something like, ‘Sounds great, but how quickly can we see that happening?’.  

Through MPNE, I was asked to talk to a company that was doing some work for the NHS.  They were looking to innovate something to help rare cancer patients.  I reached out to an incredible lady, Bettina Ryll and she helped me list the key areas I needed to raise in preparation for this call.

My most exciting conversation was after one of these difficult weeks as I was asked what improvements could be developed to help cancer patients.  I know most people thankfully haven’t got a sense of what it’s like to be a rare cancer patient and so I filled this gap and suggested some areas they could focus on. 

I was stunned when there was a long pause and she asked if I would present to her team of innovators at their next meeting.  I accepted her offer and presented to a very full zoom call a few weeks after.  It’s normally difficult to judge whether people are engaged with what you are saying, but as cameras began to be turned on, I knew our ideas were being well received. If we can set innovation on a path that helps us, it’s a big win. 

Working in the ‘rare arena’ helps us to cover all bases.  We need better research and developments in the OM space, but also in other areas that can improve the lives of people with other cancers, including OM.  Improvements that help more people are more likely to get taken up and it’s one of the reasons we support #RareDiseaseDay today. 

Our next new venture into patient literature is another exciting development, and thankfully Reta will be leading this work.  There is little information available to patients with OM, or their family members, and so we are starting with a piece of literature that gives information to someone with stage 4 disease.  We have started the ball rolling, and we can then begin looking at increasing the range of literature we have available. 

I am confident this will help guide patients and it will also help us bring clinicians together when preparing the literature.  We’ve come a long way from where we started, but we are still at the beginning in many ways as there is always more we want to do. 

 What do you worry about?

Honestly, our community.  It can’t be a surprise to anyone, but we have amazing people in our community that become friends, and so it’s hard when they go through hard times.  I never want anyone to feel as alone as we did, and so if we can make sure they always have someone to turn to, then it’s worthwhile.  We won’t ever stop there though, and so we have a lot to do. 

What has made you happy?

Improvements.  There is a shift from where we were when my dad had OM, and we have people now living with stage 4 disease.  I’ll be pleased when these incredible people are documented in scientific papers so that everyone can see we are allowed to have hope.

We were the patient voice at a NICE review last spring for Chemosaturation, and it was comforting to not hear any objections when they were discussing it.  The next step is funding the treatment, but just a couple of weeks ago, I was sent a paper from Southampton, which is sure to get things moving again, and so days like this help. 

 What are plans looking like for the next year or two?

Our AGM was due in January of this year, but as we were not quorate, we had to reschedule and we are planning this now for the 22nd March.  I have drafted my update and much of the work we want to do can be seen in this AGM Presentation.  We will share more information after our AGM, but this should give you a flavour of the plans we have.  You may notice that we haven’t said when we can launch some of our work, as it will depend on resources, but we will make certain areas a priority.  

In this presentation, you’ll see how Covid affected us as a charity.  It’s been a terrible few years for so many people and so it wasn’t appropriate for us to launch huge fundraising campaigns and press people for their support.  As such, our income has been significantly reduced and so if covid allows, we will also be focusing on how to raise the funds we need to expand the services we can offer. 

Our members and supporters can help with this, not only by fundraising and donating to us, but by being our best advocates and spreading the word about our work.  We hope this will encourage people to take on challenges or create Facebook fundraisers. 

Despite our drive, we are still a tiny charity and need more people to help us take on the work we need to do.  We all play our part in our own way so if you have helped someone with OM or us a charity, we thank you as it all helps.  

You can learn more about #RareDiseaseDay by heading to www.rarediseaseday.org

 

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