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

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 people in 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 support available outside major UK cities. Fragmented and disjointed care even at some specialist centres. Fatality rates closer to 50% in complex cases

SarcoidosisUK 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 has four key goals: Information Support Finding a cure Awareness Information: Providing accurate and detailed information to people with sarcoidosis, their carers, and medical professionals. Support: We provide emotional support for people with sarcoidosis and their carers by telephone, email, via social media and at our support groups across the UK. Finding a cure: SarcoidosisUK raises funds and invests them into focused medical research that works directly towards finding a cure for sarcoidosis. Awareness: We recognise the lack of understanding and awareness from both the medical profession and the general public regarding sarcoidosis. We aim to change this.

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

Our Solution 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 Nurses reassure by providing an empathetic listening ear Provide objective information and do not give advice Helpline NHS Services - e.g. PALS, GPs Government services - e.g Citizens Advice, Benefits SarcoidosisUK Services- e.g. Support Groups, Online Forums Other Professional Services - e.g. MIND, Counselling NHS Services Signposting Other Professional Services Government Services SarcoidosisUK Services

How the Helpline is Innovative Innovation Why it’s beneficial Recruit nurses directly affected by sarcoidosis Empathetic Informed Relatable Able to answer difficult questions Remote and part-time NHS nurses Easy for nurses to participate No office overheads Outbound calls by nurses Manages demand Manages expectations Allows flexibility for nurses and callers Cloud-based technology No paperwork Low cost Immediate Feedback loop Automatic Rewards nurses Develops and progresses helpline Innovation Recruit nurses directly affected by sarcoidosis (Cardiac and neuro) Remote and part-time NHS nurses (London, Suffolk, Glasgow) Outbound calls by nurses (GP nurse and drug helpine advisor) Cloud-based technology (Skype, Googlesheet and Googleforms) Feedback loop (from callers, nurses, office) Benefits Immediate (as opposed to NHS)

Results 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” Cost per caller?