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OcuMel UK - 2019 CURE OM Symposium

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An overview of OcuMel UK, presented at the 2019 CURE OM Symposium.

Publicado en: Salud y medicina
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OcuMel UK - 2019 CURE OM Symposium

  1. 1. How patient support developed in the UK... Supporting those affected by ocular melanoma 2009 2012 2014  Advice was gained from other organisations who support small charities and a standard template was used, known as Articles of Association, to base the rules of how we operate as a business.  Charitable aims were established, board of trustees appointed and a website built.  The UK’s first ocular melanoma conference was held.  Doctors were invited to speak on their area of expertise and leaflets were displayed in hospital waiting rooms inviting people to attend.  People were invited to become members of OcuMel UK, which began to establish a community.  OcuMel UK became an employer to one part-time employee who was supported by various volunteers.  Members were consulted on whether OcuMel UK should support research into the condition. The majority of members voted in favour of this change.  OcuMel UK registered with Companies House.  A non-profit bank account was opened so funds from donations in memory of a patient, Lillo Caruso, could be deposited.  Small awards were made to people with ocular melanoma.  A Clinical Advisory Panel was created, establishing a network of professionals to liaise with OcuMel UK.  A Guideline Development Group was created to introduce guidance on the management of uveal melanoma.  A helpline was launched. People could contact OcuMel UK if they were experiencing any difficulties.  OcuMel UK registered with the Charity Commission.  An online community built through Facebook.  OcuMel UK has grown to supporting hundreds of patients and their families.  It is currently staffed by three part-time employees who work to reach out to people living in the UK with ocular melanoma.  A care coordinator nurse is now being recruited to support people at all stages of their journey. They will have a focus on stage iv treatments and be dedicated to help patients navigating treatments.  The focus for OcuMel UK is to encourage much needed research into this condition. 2019 What’s next? • Arrange regional meetings throughout the country so stronger support networks can be made. • A patient guide has been written by a patient and will be developed over the coming months. • Research - OcuMel UK are working with other organisations to see the best way to encourage the best type of research into this condition. • Collate studies connected to ocular melanoma in advance of a review of the national guidelines. • Expand our Clinical Advisory Panel and work closer with medical professionals. • Introduce our Patient & Community Advisory Panel and plan learning modules to increase knowledge levels on how we can influence clinical trials as a community. • Continue to support our members in the areas they need. What we do • Produce and host an informational website • Run a Helpline to support people experiencing difficulties • Encourage a communities of people affected by this condition • Host an annual conference & regional meetings • Produce printed material & online content, ie. OcuMel UK YouTube channel • Involved in the National guidelines • Advocate for patients • Focus is now on encouraging research Charity Objects 1. To primarily promote and protect the physical and mental health of sufferers of ocular melanoma and their families in the United Kingdom through the provision of support, information, education and practical advice. 2. To advance the education of the public (and in particular medical professionals) on the subject of ocular melanoma. 3. To support research into ocular melanoma and to publish the useful results. Key Priorities 1. To reduce the delay in diagnosing ocular melanoma 2. To improve information and support available to medical professionals and patients 3. Improve patient focused surveillance 4. Improve patient journey 5. Support research and share findings 6. To ensure the work of OcuMel UK is sustainable 2011 Tips on how to run an annual conference The first event OcuMel UK planned, was the UK’s first ocular melanoma conference. We looked at various hotels to see how much the event would cost the charity. Our budget included: • A day delegate cost to the hotel to provide snacks and lunch; • Travel costs for people to attend; • Filming of the talks so these could be viewed by people after the event; • Travel expenses for the speakers to attend; • The event was advertised with flyers at specialist hospitals before the event and so we budgeted for printing and postage; • Printing costs for a programme to show a timetable of the talks for the conference. Over the years, we’ve increased the conference to a two or three day event to make it more worthwhile for people travelling a long distance to attend. We have also recognised the need for time for people to take in the information they have learnt and also time for everyone to get to know each other. • The evening dinner can be planned so networks can be made. • To cover the cost of holding the event, pharmaceutical companies with an interest in this condition, can be approach to part- sponsor the event. Letters can be sent to these companies including the aims of the event, who would be speaking and a breakdown of the expected costs. • Delegates can be asked to contribute to the event to help cover costs. • To ensure attendance by delegates, an amount could be charged and then returned to people on attendance. • If people can claim travel expenses, a maximum amount should be stated or a flat amount set and only reimbursed once they have attended. How is OcuMel UK funded? OcuMel UK receives funds through the people it has supported over the years. Many of these people have fundraised for us or made donations to help us grow the charity and offer more services to it’s members. It has also received funding from companies connected to it’s members and from applying to trusts for certain projects. Pharmaceutical companies can sponsor charities to hold certain meetings, particularly annual conferences. This means conferences can be held with little cost to patients and family members and travel expenses can be reclaimed by attendees. How has OcuMel UK grown its community? OcuMel UK operates a free membership scheme and is open to anyone affected by ocular melanoma. This means the charity is then run by the trustees on behalf of it’s members. Trustees volunteer their time and expertise to run the charity. By being a member, it allows us to stay in contact with people and thank any that have helped us. Our online community is managed through several Facebook groups. In addition, to reaching out to our members, we also aim to publish and send all our members a newsletter so they can keep updated on developments and what the charity is working on. Two main Facebook groups - Patient Support & Family Support Three additional groups - Knowledge & Strategy, Stage IV Support and Bereaved Support We also manage another group which is open to members and non-members. OcuMel UK Awareness and Fundraising helps us to engage with people who are fundraising for us. Campaigns - I Patch For Every year we run a campaign in May, to raise awareness of ocular melanoma, to raise funds and to bring other organisations together so that people around the world can find support. We created a different platform on, so that resources can be shared amongst organisations taking part in the campaign. People can order a fundraising pack and show who they are ‘patching for’ with one of our badges. It maybe themselves or someone they know with ocular melanoma. Campaigns like this are a great way for people to show why they support your organisation. Every year, we find more people affected by this condition through our campaigns so that more people are able to connect with other patients or family members.