1. Patient Organisation Day, ERS Congress, September 2018
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 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

3. 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, , 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.

4. 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

5. 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

6. 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)

7. 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?