SarcoidosisUK Nurse Helpline ‘Innovative Collaborations in Patient Education’

1. SarcoidosisUK Nurse Helpline‘Innovative Collaborations in Patient Education’ Patient Organisation Day, ERS Congress, September 2018

2. Sarcoidosis 101 Rare auto-immune disease. Most commonly affecting lungs, eyes & skin. Any organ can be affected. Complex sarcoidosis affects multiple organs. Approx. 6,500 peoplein the UK affected. 74,000 in Europe. No known cause. Suspected genetic predisposition triggered by unknown environmental substance. No known treatment. Steroidal medication controls symptoms. Symptoms depend on organ(s) affected. Commonly include: breathlessness, fatigue, nausea, achy joints and skin lesions. Fatal in ~5% of cases.Usually cardiac or neuro involvement. No specialist supportavailable outside major UK cities. Fragmented and disjointed care even at some specialist centres.

3. SarcoidosisUK is the only UK sarcoidosis patient organisation. The majority of our spending goes towards research into a cure. Until then we provide the best information and support possible for patients and raise awareness of the condition. SarcoidosisUK SarcoidosisUK has four key goals: Information Support Finding a cure Awareness

4. Emotional Need Clinical Need Lack of specialist knowledge / awareness from healthcare professionals NHS delivery targets leave long gaps between appointments The Demand Lack of understanding and awareness from the public Practical Need Often a confusing and disjointed clinical pathway Patient Rare and complicated condition Disabled patients

5. Information Support Callers can talk for as long as necessary and as many times as necessary Use official treatment guidelines and published research Answer any questions, regardless of connection with sarcoidosis Callers develop rapport with nurses who have shared experiences Our Solution Nurses reassure by providing an empathetic listening ear Provide objective information and do not give advice Helpline Signposting NHS Services Other Professional Services Government Services SarcoidosisUK Services

6. How the Helpline is Innovative

7. Total referrals to Helpline since August 2016: 505 Average referrals per week: 5 Average time between referral and 1st contact: 4 days Contact has been made with 89% referrals 130 callers have left feedback 97% positive feedback 72% “Fantastic” 25% “Pretty Good” Results