Minutes Natinal Specialist and Screening Divisin Area 062 Gyle Square 1 Suth Gyle Crescent Edinburgh EH12 9EB Telephne: 0131 275 7546 Fax: 0131 275 7614 Website: www.cyans.sct.nhs.uk Children and Yung Peple s Allergy Netwrk Sctland (CYANS) Steering Grup Date: Mnday 29 August Time: 10.00-12.30 Venue: Lecture Rm at SPHERE 18 Millerfield Place, Edinburgh EH9 1LW Attendees Prfessr Jürgen Schwarze, CYANS Lead Clinician, NHS Lthian Dr Adrian Sie, Cnsultant Paediatrician, NHS Lanarkshire (VC) Dr Rsie Hague, Cnsultant Paediatric Allergy, Immunlgy and Infectius Diseases, NHS GG&C Ms Margaret Kelman, Allergy UK Research & Develpment Nurse, University f Edinburgh Mrs Liz Blackman, Senir Prgramme Manager, NSD, NSS Dr Nadia Qayyum, Cnsultant Paediatrician, NHS GG&C Mrs Katie Claytn, Prgramme Manager, NSD, NSS Mr Liam Andersn, Prgramme Supprt Officer, NSD, NSS Mrs Karen Rbertsn, Parent Representative/Trustee, Anaphylaxis Campaign Aplgies: Ms Lrraine Currie, Child Health Cmmissiner, NHS Grampian (Chair) Prfessr Aziz Sheikh, Prfessr f Primary Care Research and Develpment, University f Edinburgh Ms Lrraine Clark, Specialist Allergy and Immunlgy Nurse, NHS Grampian Ms Lynn Mrrice, Research Manager, University f Edinburgh Dr Helen Rhdes, Cnsultant Paediatrician, NHS Lthian Ms Janet Purves, Dietician, NHS Fife/ NHS Lthian Ms Susan Brwn, Allergy Specialist Nurse, NHS Lthian 2
1. Welcme and intrductins Prfessr Jürgen Schwarze welcmed everyne t the meeting advising that due t aplgies frm Mrs Lrraine Currie he wuld act as Chair fr this meeting. Prfessr Schwarze began by thanking Ms Margaret Kelman fr her wrk and cmmitment t the CYANS netwrk ver the last fur years; it was advised that Ms Kelman wuld remain n the CYANS steering grup in her new secnded psitin as an Allergy UK Research & Develpment Nurse fr the University f Edinburgh. Prfessr Schwarze welcmed Mrs Katie Claytn as the new CYANS Prgramme Manager. Prfessr Schwarze als tk this pprtunity t welcme Ms Karen Rbertsn a parent representative and trustee f the Anaphylaxis Campaign as a new member f the CYANS steering grup. It was nted that Mrs Kathleen Rss had decided t step dwn frm her psitin n the steering grup. Prfessr Schwarze extended a special thank yu t Mrs Rss fr her service t the Netwrk and cntinued supprt f allergy care in Sctland. 2. Review f Previus Minutes The minutes frm December 2015 were frmally accepted. Prfessr Schwarze asked fr a range f changes t be made t the minutes f the steering grup meeting held 24 May 2016. Mr Liam Andersn agreed these wuld be made fllwing the meeting. 3. Matters arising frm previus minutes Actin: Mr Liam Andersn Previusly, the steering grup had discussed the inclusin f a trainee representative in the steering grup. Prfessr Schwarze advised that a trainee dctr frm the West f Sctland had cntacted him with interest f becming invlved. A meeting has been set up fr mid September 2016 t discuss this psitin. Prfessr Schwarze will prgress this and reprt back at the next Steering Grup. Actin: Prfessr Jürgen Schwarze Prfessr Schwarze raised the tpic f allergy rad shws. Mrs Margaret Kelman cnfirmed that NHS Highland had been interested in having a rad shw. Dr Salim Ghayyda, Cnsultant Paediatrician fr NHS Highland had advised that an MDT clinic has been established fr Highland frm January 2017 Dr Rsie Hague will supprt a clinic in NHS Highland in September and will gauge interest in a rad shw and liaise with Mrs Claytn, wh depending n the level f interest will develp/ plan a rad shw. Actin: Dr Rsie Hague & Mrs Katie Claytn At the last steering grup it had been queried if there was merit in sending ut psters and pstcards t raise awareness f CYANS. Prfessr Schwarze had requested that a shrt business case detailing cst and value shuld be presented t the steering grup befre a decisin was made n this. After the change in prgramme manager Mrs Katie Claytn agreed t prgress this. 3
Prfessr Schwarze als raised scial media as a factr in develping CYANS nline presence. It was advised that there was ptential benefit hwever, any scial media presence wuld have t remain cnsistent and active. Previusly it had been discussed that Dr David Crdiner culd ptentially lead n develping a scial media presence fr the Netwrk. Dr Adrian Sie advised that he had recently asked GlbalWeb t activate the blgging feature f the website which wuld be develped as a tl fr sharing infrmatin; the grup agreed that in the shrt term this culd prvide CYANS with a scial media presence. Dr Sie agreed t cntact Dr Crdiner abut develping scial media fr CYANS. 4. CYANS end f year Reprt Actin: Dr Adrian Sie Mrs Katie Claytn reprted that the CYANS Annual Reprt had been cmpleted fr the year 2015/16. It was advised that the annual reprt had previusly been shared with the steering grup fr cmment; hwever, if anyne had any cmments t make they shuld return cmments t Mrs Claytn by 05/09/2016. Mrs Claytn reminded the grup that the annual reprt wuld frm part f the discussin at the next steering grup as members frm senir management at NSD will be attending t undertake the CYANS Annual Perfrmance Review. 5. CYANS Terms f Reference Mrs Katie Claytn presented the terms f reference t the Steering Grup explaining that there were elements within the dcument which detail the gvernance and reprting structures f the steering grup and sub grups. The membership f the grup was reviewed and amended. Current wrking grup leads missing in the dcument were added: ; Dr Helen Rhdes fr Mdels f Allergy Care Grup, Prf Aziz Sheikh, Dr Lynne Mrrice and Dr Richard Herrit fr Quality Imprvement (Data). Ms Margaret Kelman expressed that she wished t be a lead n the Patient and Parent invlvement grup. Prfessr Schwarze suggested that an invite shuld be sent t Dr Gerge Raptis as well as Ms Susan Harley and Dr Marietta Nrtier t jin the steering grup. Mrs Claytn t send a frmal invite. It was suggested that if the grup had any further changes t this dcument they shuld return cmments t Mrs Claytn by 05/09/2016. Prfessr Schwarze advised that Allergy UK had previusly been invited t jin the steering grup. A paper was submitted n the mrning f 29/08/2016 which detailed evidence frm Allergy UK f engagement in Sctland; such as patient activities, cntacts and whether Allergy UK as an rganisatin, had a strng patient vice and if they culd represent the Scttish public fr allergy. Prfessr Schwarze asked the grup t review this paper and reprt back t Mrs Katie Claytn wh wuld cllate respnses and reprt back t the steering grup in Nvember. 4
6. Wrking Grups update Mdels f Allergy Care Resurce pack Dr Adrian Sie advised that the Cws milk allergy leaflet had been successfully published n the CYANS website. Mrs Katie Claytn advised that the three utstanding dcuments had been plain English apprved and had been circulated t the steering grup fr cmment. Graphics were t be added t each leaflet and a final amended versin will be circulated with changes highlighted. Fllwing this the grup had apprved the leaflets fr publicatin n the CYANS website. Actin: Mr Liam Andersn and Mrs Katie Claytn Peanut leaflet: Dr Hague suggested fr peanuts- arachis shuld be included in the pening sectin. Egg leaflet: Dr Sie suggested a change t nly g up the egg ladder if it has been discussed with yur medical team since such a decisin is ften made by dieticians and nt medical staff. The grup cnsidered this and decided t change the text t clinical team instead f medical team. Mrs Claytn will make changes ahead f these being published n the website. Transitin There was discussin n hw t prgress the transitin wrk, given the repeated cancelling f the meeting. It was agreed the emphasis shuld be n equipping yung peple t manage their wn allergy rather than a simple transfer frm ne service t anther. Prfessr Schwarze requested t see the dcument prduced by Dr Malclm Shepherd. Dr Hague acknwledged that NHS Lthian was currently using the Ready Steady G package fr transitin guidance. Hwever, cnsiderable revisins wuld be required fr this t be incrprated with the CYANS allergy transitin recmmendatins. It was recgnised that Dr Shepherd carried ut quality f life assessments as part f his practice and he has requested that this shuld be reflected in the guidelines. It was advised that that Dr Shepherd was wrking n a quality f life assessment and a fd allergy quality f life assessment which culd be included in the dcuments. The grup advised that a tl wuld be useful hwever; a lengthy set f questins wuld nt be suited t a clinic setting due t limited time cnstraints per patient. There was cnsensus that a further meeting shuld be arranged as sn as pssible with ptential input frm Dr Malclm Shepherd, attending in persn if pssible, representatin frm his team r input befre if nt pssible. Mr Andersn agreed t arrange a further meeting t agree and finalise the transitin pathway; all relevant dcuments wuld be shared ahead f the meeting. Actin: Mr Liam Andersn 5
Referral pathways Dr Hague reprted that this had been an nging piece f wrk which was slwed dwn by increased clinical cmmitments after Dr Ali s departure frm Glasgw. Dr Hague will be able t deliver the Referral Pathways dcument by February 2017. Educatin and training: Primary Care Allergy Training (PCAT) Actin: Dr Rsie Hague Mrs Claytn prvided an update n the PCAT advising that, fllwing an applicatin, NSD has granted CYANS further funding fr 100 General Practitiners t undertake the PCAT. The PCAT reprt submitted fr this funding applicatin will be circulated t the steering grup. A sessin is currently being planned fr Autumn 2016 in NHS Highland. Mr Andersn advised that he is currently liaising with Dr Salim Ghayyda, Ms Jdie Hughes and Ms Julie Jhnsn t finalise a date. Actin: Mr Liam Andersn Mrs Claytn advised that she had made cntact with NHS Fife and that here is strng interest in GP allergy training. A plan will be presented t the Nvember steering grup. Dr Hague suggested that there may als be merit in cntacting university practices as a higher prprtin f allergy patients at university practices will be at the age where transitin services are mst relevant s cntacting university practices wuld enable CYANS t fcus allergy training n thse GPs wh see these patients mst. DrQayyum advised that the Glasgw sessin had been successful thugh the venue was nt suitable fr breakut sessins. It was suggested that an ask the expert sessin is added t the prgramme f the PCAT face t-face training t engender sme discussin frm the participants. Dr Qayyum suggested that CYANS cntact the riginal participants f the PCAT t assess if they are using the practice that PCAT taught them, if they have shared this training with ther clleagues and if they are able t manage mre children in a primary care setting befre referring t secndary care. Dr Qayyum agreed t prepare questins fr the previus PCAT participants. Actin: Dr Nadia Qayyum Annual Scttish Paediatric Study Day It was advised that the Study Day is bked fr 2nd March 2017 at Stirling Curt Htel, The grup discussed suggestins fr the prgramme 2017 allergy study day: Lecture tpics suggested A suggestin that had been made frm the last 2 years was fr the management f Chrnic Urticaria Several requests fr lecture n Cw s milk allergy with a fcus n diet, Calcium/ vitamin supplements, apprpriate frmulas, milk ladder. Prfessr Schwarze suggested that because CYANS is prgressing a transitin pathway, there culd be a talk t transitin. 6
The LEAP and EAT study were suggested as ptential tpics fr debate. This Leap was cvered in the last CYANS Allergy Study Day. Dr Hauge suggested a debate n early fd intrductin with Prf Charltte Wright and an allergist. A talk n FPIES A talk n Allergy Psychlgy Multiple allergies Impact n fd avidance n families New advances in Allergy- advances in Vaccines etc ( Update n current research) Lcal audit r research n any many majr appraches t allergy - steering grup t prvide ideas. Actin: Steering Grup Practical wrkshps Practical wrkshps n case discussins Test f Changes- new service prvisin mdels steering grup t prvide ideas/ examples Behaviural Aspect f dealing with allergy- psychlgy f dealing with Allergy in the Family, Dr Qayyum t prvide a name f a ptential speaker previus Speaker. Actin: Dr Nadia Qayyum Allergy Nurses and Dieticians Grup The steering grup welcmed the initiative t frm a nurses and dieticians allergy grup. It was agreed that if this grup was t be part f CYANS, there wuld need t be clear deliverables which met the verall required utcmes frm the netwrk. It was agreed that CYANS will help t arrange a further meeting f the grup at frm which a clear brief shuld be drawn up detailing what the grup is lking t achieve and what the utputs wuld be. This will be presented at the next steering Grup by Mrs Katie Claytn. The Steering Grup culd then cnsider if there was merit in investing CYANS resurce is such activity. Mr Andersn t arrange a recnvened meeting. Actin: Mr Liam Andersn Free Frm Allergy Shw There was a general cnsensus that returning t the allergy shw wuld be beneficial t the netwrk. Prfessr Schwarze presented at the 2016 shw alng with a number f CYANS clleagues, during a CPD mrning. One f these clleagues was queried by their health bard because f a perceived cnflict with the WHO Baby Friendly Status (breast feeding). It was suggested that clarity is needed n whether cnsultants wrking in the Scttish NHS can participate in educatinal meetings that are spnsred by cmpanies that prduce specialist baby frmulas. Mrs Liz Blackman advised she wuld infrm the Steering Grup what the psitin was frm NSS. Prfessr Schwarze will cntact the Ryal Cllege fr guidance. Actin: Mrs Liz Blackman Actin: Prfessr Jürgen Schwarze Ms Kelman, Dr Sie, Dr Qayyum, Ms Lrraine Clark and Ms Deirdre Strachan have advised that they wuld be willing t frm a small sub grup t gather sme ideas and plan hw CYANS wuld present itself at the Allergy and Free Frm Shw. Mrs Liz Blackman advised that she wuld be willing t cmmit a resurce as 7
lng as there was slid cncrete ideas in place. Mrs Claytn and Mr Andersn t secure a stall at the fr the 2017 Free Frm Shw and arrange a meeting t discuss. & Mr Liam Andersn Website: Mrs Claytn advised that she has arranged a meeting with Glbalweb in September 2016 t ensure that cntent is updated and new cntent is prduced. Dr Sie advised that the families sectin f the website still needs sme wrk hwever there wuld be merit in beginning t develp a yung persn s page t deal with the tpic f transitin. Prfessr Schwarze queried the intentin f NSS t phase ut the CYANS lg. It was clarified this was a directive frm Scttish Gvernment; n lgs beynd the standard NHS lgs were t be develped. Netwrks shuld fcus n creating and maintaining strng individual brand identities. The phasing ut f individual Netwrk lgs shuld nt affect a strng netwrk brand identity which CYANS already has and will cntinue t prmte. Mrs Blackman recmmended that any new material prduced fr the netwrk shuld be develped with this in mind. Mr Andersn will share the NHS Sctland Identity Guidelines with the steering grup. 7. Quality Imprvement Actin: Mr Liam Andersn Mrs Claytn advised that the CYANS clinical audit system had been updated and was ready t have sme test data upladed. Ms Susan Brwn, Ms Lrraine Clark and Dr Sie have agreed t start inputting data t test the CAS. Mr James Thm, IMS Data Manager reprted t the grup that there wuld be legislative changes t the cnsent guidelines with children. By 2018 data gathering fr NHS Sctland will require an pt-in agreement t cllect infrmatin. Mr Thm advised that Ms Clark had previusly upladed 99 patients int the CAS. Mr Thm t cntact the existing 99 entries t infrm them that CYANS still hld their data. Mrs Claytn advised that that she develped an pt-in frm and will share with the Steering Grup. Actin: Mr James Thm Dr Hague advised that the usability f the CAS was mre difficult as there was n direct benefit fr a patient cnsultatin. Prfessr Schwarze advised that the data base was put tgether t understand hw the service wrks, nt t prvide day t day clinic supprt- it was suggested that a further meeting shuld take place t see if there is any further pprtunity t build mre usability in fr the clinical setting. Mrs Claytn t arrange a meeting with the data grup 8. Date f next meeting 8
Mnday 28 th Nvember 10.00-13.00 SPHERE lecture theatre. The Annual perfrmance review will take place at the next meeting. It is imprtant that as many members f the steering grup can attend as pssible. 9