Anaphylaxis Campaign: Insights from a patient support group Lynne Regent Anaphylaxis Campaign CEO @LynneRegentAC
Content Patient support groups in general: What we bring to the party. Our role Our challenges What we need to do to be most effective The Anaphylaxis Campaign-A patient support group in action!
What do we bring to the party? Authenticity-a trusted link to patients, carers, families Independence Voice Expertise (of differing kinds) Capacity (of varying extents)
What is our role? As service providers As advisors/critical friends Giving support and information As campaigners As brokers/champions of patient involvement Informing and supporting commissioning
What are our challenges? Negotiating a complex landscape Clarity of purpose and role Clarity of what can offer Capacity and maturity Funding
What we need to do Nurture and protect our legitimacy Define what good looks like Define the outcomes that matter Empower patients and carers Work in partnership/alliances Generate support
The Anaphylaxis Campaign A patient support group in action!
Who we are The only UK-wide charity solely supporting people at risk from severe allergic reactions (anaphylaxis) For 20 years we have provided information and support to patients and carers
Meet The Team!
What we do Raise awareness Provide expert advice, support and information Campaign for better access to clinical care Work with stakeholders e.g. patients and carers,the food industry, clinicians, government bodies Partner with related charities nationally and internationally Support research
Our individual members Approximately 5,000 across the UK 77% are parents Most are affected by food allergy, primarily peanut Some allergic to insect venom, latex, drugs,idiopathic
Supporting our individual members On line communications website, facebook, twitter,linked in Helpline service 5 days a week, via phone, email, facebook Workshops for parents and young people Support groups/ Meet ups Meetings with hard to reach groups Product alerts Working with clinicians
Engaging our volunteers 130 Volunteers 46 LIVE volunteers 20 support group leaders Based across the UK
Working with Clinicians Facilitating research small grants scheme / ifaam / projects with allergy clinics. Our Clinical and Scientific Panel Professional membership Training programmes-allergywise Linking with allergy clinics Work with the BSACI / EAACI/BSI
Working with Professional Members Professional Membership - 500 members share experiences/deliver information Free conferences, enewsletters, login area of the website, forum, information to share with patients, factsheets AllergyWise online anaphylaxis training for healthcare professionals, GPs and Practice Nurses, Pharmacists accredited by the RCN, GP s and Practice Nurses version also accredited by the RCGP
Working with Corporate members Working with the food industry - retailers, caterers, manufacturers, research organisations, Food Standards Agency, Food and Drink Federation, British Retail Consortium Working with pharmaceutical companies Corporate Membership Scheme delivers information through bulletins, enewsletters, conferences, individual queries, Factsheets Product alerts Consumer feedback e.g. labelling issues Responding to new EU regulations. Work on thresholds /Reference doses
Campaigning for better allergy services Membership of the National Allergy Strategy Group Meeting with government departments i.e. DoH, DoE,MHRA Membership of government working groups and other national bodies Working with other charities nationally and internationally
Communicating our message Our website mobile responsive Presence on Facebook, Twitter, YouTube and LinkedIn Members magazine Outlook enewsletters and ebulletins Online forum Our Knowledgebase containing our factsheets
Our Factsheets Food allergens - Celery, Cow s Milk, Drugs, Egg, Fish and Shellfish, Insect Stings, Kiwi, Latex, Lupin, Mustard, Peanuts and tree nuts, Sesame, Soya, Wheat Idiopathic Anaphylaxis Oral Allergy Anaphylaxis in the Early Years Setting FAQ s About Food and FAQ s in School Questions Teenagers Ask Available on our website We have the information standard Peer reviewed by allergy specialists and dietitians
Next steps Work with Young people- new films Revamping workshops and support groups Increasing profile- development of online channels Spreading knowledge of new food regulations Work on thresholds/reference doses Campaigns- number of adrenaline injectors prescribed, generic adrenaline injectors in schools
Thank you for listening Any questions? Lynne Regent Anaphylaxis Campaign CEO @LynneRegentAC lynne.regent@anaphylaxis.org.uk 01252 546100