The Role of the Pharmacist in the Support of Young People with Chronic Illness, through the Exemplar of Juvenile Arthritis Jonathan Burton1, Janet E McDonagh2,

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The Role of the Pharmacist in the Support of Young People with Chronic Illness, through the Exemplar of Juvenile Arthritis Jonathan Burton1, Janet E McDonagh2, Nicola J Gray3, Catrin Barker4, Roisin Campbell5, Julie Prescott6, Rachel Roberts7, Karen L Shaw8, Felicity J Smith9, David Terry10,11 1Right Medicine Pharmacy, Stirling; 2University of Manchester; 3Green Line Consulting Limited, Manchester; 4Alder Hey Children’s Hospital NHS Foundation Trust, Liverpool; 5Musgrave Park Hospital, Belfast; 6University of Bolton; 7Pharmacy Research UK; 8University of Birmingham; 9UCL School of Pharmacy; 10Aston University; 11Birmingham Children’s Hospital NHS Foundation Trust Introduction Sparse research exists about the role of pharmacists in the care of young people (YP) with chronic illness In our previous ‘Arthriting’ study of the experience of YP using medication to treat juvenile arthritis, references to the pharmacist were rare [1] The role of the pharmacist has expanded; the hospital pharmacist integrating into the clinical team & the community pharmacist offering extended medication counselling for older people with chronic illness The aim of this project was to explore the current role, the potential role, and the needs of pharmacists to deliver services to YP using the exemplar of juvenile arthritis Project Design – Multi-stage consensus building methods Phase 1 Focus Groups 18 Pharmacists (4:4:4:6) 7 hospital: 10 community: 1 public health/community 4 Wales: 4 Scotland: 10 England Phase 1 Supplementary Online Survey 5 Pharmacists 4 community: 1 hospital 1 Wales: 4 England Phase 2 Stakeholder Interviews 15 Stakeholders 3 pharmacist commissioners 2 pharmacist policymakers 2 pharmacy staff members (1 community and 1 hospital) 4 rheumatologists 1 specialist nurse 3 lay advocates 1 Northern Ireland: 1 Scotland: 13 England Phase 3 Stakeholder Discussion Groups 26 Participants (11: 8: 7) 13 pharmacists; 13 rheumatology staff 9 community pharmacists 4 hospital pharmacists 6 rheumatologists 5 specialist nurses 1 physiotherapist 8 Scotland: 18 England PPI work with young people 20 participants (13: 7) 7 Northern Ireland: 13 England Main themes from the Project Missed opportunities for pharmacists to engage if parents picked up prescriptions alone Caution among pharmacists about handing out prescriptions to unaccompanied YP Training needed to develop skills in communicating with YP, which was currently experience-dependent Hospital pharmacists as the specialist medication contact point for generalist community colleagues Better information flow about YP from the hospital rheumatology setting to their nominated community pharmacy Community pharmacists helping young people to develop general healthcare skills, such as navigating the repeat prescription system On engaging more with YP needing chronic medication: I think the key thing for me is that although this patient group we have been talking about - young people with chronic conditions - although they’re numerically quite a small group in the bigger scheme of things, they are patients who are going to continue to use the medical and pharmacy services usually for the rest of their adult lives… If you can strike up a good sort of working relationship with a young patient, then you can effectively almost give them some ‘tuition in how to get the best out of the professionals around them; in our case, pharmacists. So I think that gives this patient group a special value, in terms of engaging with patients and bringing them with us as they get older. [Community Pharmacist, Scotland] On developing better communication with YP: You know, making it really straightforward so that you just make it as simple as you can. And try to gauge their level of understanding - whether it’s a parent or a child you’re speaking to - that you’ve got some way of watching their body language, asking them questions, or whatever it is to get to gauge their understanding. [Non-Paediatric Hospital Pharmacist, Wales] On building skills among YP: I think building a strategy for young people collecting their own medicines and interacting with pharmacies at an earlier age than they do currently…frequently, they say “Oh my mum will go for it”. It’s convenience and that’s fine, but I think never to have done it is a problem. You know when you go to university, or when you know move away from home…I think that’s really important. [Rheumatologist, England] On better communication between sectors: One of the big things there [in the 2013 ‘Prescription for Excellence’ policy document] is breaking down that [communication] barrier, so that the secondary care people will be much more accessible at the front line; whether for advice direct to the patient or to the community pharmacist. [Non-Paediatric Hospital Pharmacist, Scotland] Discussion & Conclusions: There was consensus both within and beyond the pharmacy profession that pharmacists could add value to the care of YP with chronic illnesses like juvenile arthritis The roles of hospital and community pharmacists were seen as different but complementary, with better information flow and networking across sectors required for the benefit of the young person Reference 1. Gray NJ, McDonagh JE, Harvey K, Prescott J, Shaw KL, Smith FJ, Stephenson R, Terry D, Fleck K, Roberts R. Arthriting: Exploring the relationship between identity and medicines use, and to identify the contribution of medicines and pharmacy services, for the care of young people with arthritis. Final report. London: Pharmacy Research UK; 2013. Funded by