Patients take universal health coverage into their own hands

150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.

Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative best practice, research and to highlight specific examples of how to improve healthcare access across countries and contexts. Topics will include new approaches to community mobilisation, health professional-led innovation in disaster and conflict areas, strengthening health systems and patient involvement in drug development.

The adoption of the UN Sustainable Development Goals has pushed universal health coverage (UHC) – where all people receive the health services they need, without suffering financial hardship when paying for them – to the front of the health agenda. Every UN member state has agreed to ‘ensure healthy lives and promote well-being for all’ by 2030, which gives patients the timescale and the means to hold them to account. Many patients are taking the challenge of universal health coverage into their own hands by sharing new ideas which already improve healthcare in their communities.

Innovative approaches are improving patient experience, choice of treatment options and outcomes across the world. New examples are constantly surfacing: virtual patient communities now provide greater access to information and peer support, crowd-funding helps patients pay for the research they want to see, and social media helps to normalise different conditions and reduce stigma. These developments are changing the face of healthcare. Patients are more informed, more involved, and more engaged in working collaboratively with others to change health systems for good.

Jolanta Bilińska, Chair of the International Alliance of Patients’ Organizations, said:

‘History will judge governments against whether universal health coverage is achieved by 2030, but the responsibility lies with everyone involved in healthcare, including patients. Patients have an ethical and moral right to be involved in all decisions about their care, and bring new ideas which can’t be replicated by any other group. Patients are already changing healthcare with innovative approaches. Decision-makers at every level must do everything possible to listen to and embrace the patient voice.’

The International Alliance of Patients’ Organizations will host the 7th Global Patients Congress in London, 9-11 April. Patients and patients’ groups will share further examples of patient-led innovation in healthcare throughout the event. Find out more at www.iapo.org.uk/GPC2016

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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗

✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.

👩‍⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.

🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.

They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused

😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.

💜 A simple tool. A better consultation.

👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:

www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.

💁‍♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.

🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.

💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.

❌ But lupus is not “just joint pain”.

‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.

💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.

Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).

📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount
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☹️ Does joint pa

🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.

‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.

💁‍♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.

🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

🟣 #MakeItCount
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😱 New tool for lupus!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients and healthcare professionals structure consultations, prioritise what matters to patients, and support more focused discussions.

Because lupus is complex, and consultation time is limited.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
📥 Download for free or fill it in online: www.lupus-europe.org/lupus-consultation-cards/

🟣 #makeitcount
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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