Should gluten free products be available on prescription?

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Greater Nttingham Cnsultatin Dcument Shuld gluten free prducts be available n prescriptin? Hw t have yur say: Fill in this survey and return t the freepst address Cmplete nline at: www.surveymnkey.cm/r/gn-gluten-free Call: 0115 883 9594 (City patients) r 0115 883 1709 (Cunty patients) fr a printed cpy r t cmplete ver the phne Jin us at an event: www.nttinghamnrtheastccg.nhs.uk/nhs/gluten This cnsultatin will run fr six weeks frm Thursday 14 June t Thursday 26 July 2018 /NHSSuthNtts /NHSNttingham

Gluten free cnsultatin Frmal cnsultatin: have yur say n the future f gluten free fds n NHS prescriptin We want t hear yur views abut gluten free fds and if they shuld cntinue t be prescribed n the lcal NHS fr adults and children with celiac disease. Acrss Greater Nttingham, the NHS spent 176,488 last year n gluten free fds such as bread, flur, pasta and cereal. The NHS des nt prvide fd n prescriptin fr any ther patients, such as diabetics r thse with allergies. Over the past few years, gluten free fds have becme widely available in supermarkets at mre cmpetitive prices as cmpared t 30 years ag when chice was limited. T make sure that we are making the best use f NHS mney, we are reviewing sme f the services we prvide. This means smetimes we need t make difficult decisins abut what services can be funded. We understand that ur decisins can have an impact n different peple in different ways. We want t wrk with patients, carers and lcal peple t make sure that we cnsider peple s views when making decisins abut the services that are mst needed. If we are thinking abut a big change t a service, we will always engage with the peple affected and the wider public abut it. The Big Health Debate is ur patient engagement campaign designed t start the cnversatin with patients abut the challenges the NHS faces. We will be using it this summer t talk t peple abut a number f ptential service changes. The review f this gluten free prpsal frms part f this wider picture. Wh are we? The Greater Nttingham Clinical Cmmissining Partnership (CCP) is made up f fur Clinical Cmmissining Grups - NHS Nttingham City, NHS Nttingham Nrth and East, NHS Nttingham West and NHS Rushcliffe. The Greater Nttingham CCP cvers Nttingham City, Rushcliffe, Brxtwe, Gedling and Hucknall. Clinical Cmmissining Grups are respnsible fr planning and cmmissining health care services fr a particular lcal area. Current gluten free prescribing Acrss Greater Nttingham and Mid- Nttinghamshire, there are currently differences in hw much gluten free fd is prescribed t peple living with celiac disease - see belw. Nttingham City Nttingham City fllw the prescribing guidelines in the table belw. Age and gender Number f units Child (1-3 years) 10 Child (4-6 years) 11 Child (7-10 years) 13 Child (11-14 years) 15 Child (15-18 years) 18 Male 19-59 years 18 Male 60-74 years 16 Male 75+ years 14 Female 19-74 years 14 Female 75+ years 12 Breastfeeding Add 4 3rd trimester pregnancy Add 1

One unit is the same as:400g laf f bread r 250g f pasta r tw pizza bases. Suth Nttinghamshire (Nttingham Nrth and East, Nttingham West and Rushcliffe) Fur units in ttal f lng life bread and/r flur each mnth n prescriptin fr patients with a diagnsed cnditin f celiac disease r dermatitis herpetifrmis. Mid Ntts (Mansfield and Ashfield and Newark and Sherwd) N prescribing f gluten free fds. Natinal and lcal cnsultatin The Gvernment recently undertk a natinal cnsultatin abut whether gluten free fds shuld be available n prescriptin fr peple with celiac disease. Fllwing the natinal cnsultatin, they recmmended that gluten free prescribing shuld be restricted t bread and mixes nly. Hwever, there has been n decisin taken abut limiting quantities. Gvernment advice is that Cmmissiners carry ut their wn cnsultatin with lcal peple and make their wn decisins abut what, if anything, t prescribe. The Suth Nttinghamshire Cmmissiners have already cnducted a cnsultatin arund gluten free fd n prescriptin in 2015, which is when the amunt and range was restricted t fur units. Yu can find mre abut this n the Rushcliffe, Nttingham Nrth and East r Nttingham West CCG websites. Why d peple use gluten free fds? Gluten is a type f prtein that is fund in three types f cereals - wheat, barley and rye. Gluten free fds are currently prescribed fr peple wh have been frmally diagnsed with celiac disease r dermatitis herpetifrmis. What Is Celiac Disease? It is a cmmn digestive cnditin, triggered by the prtein gluten which is fund in wheat, barley and rye. Symptms can be mild r very severe and can include abdminal pain, diarrhea, nausea and weight lss. There is n cure fr celiac disease, but switching t a gluten free diet helps t cntrl the symptms and prevent lng-term cnsequences f the disease. What is Dermatitis herpetifrmis Dermatitis herpetifrmis is a type f skin rash (linked t celiac disease) which shuld clear up after switching t a gluten free diet. Why are we cnsidering a change? The Clinical Cmmissining Grups have nw aligned as the Greater Nttingham Clinical Cmmissining Partnership. Tgether, we have been reviewing the services prvided based n clinical effectiveness, if they prvide sufficient benefits and if they ffer value fr mney. Lcal dctrs have reviewed gluten free prescribing against these measures and cncluded that: Gluten is nt essential t a healthy diet and can be replaced by ther fds. There is a lt f infrmatin available abut hw t eat a healthy gluten free diet. Lts f fds are naturally gluten free such as fresh fruit and vegetables, meat, chicken, fish, eggs and lentils, including widely available naturally gluten free carbhydrates that can be used such as rice and ptates. Recently, there has been a large increase in the availability f gluten free fds in supermarkets, making it easier t eat a healthy and varied gluten free diet.

Gluten free cnsultatin The NHS des nt prvide fd n prescriptin fr ther grups f patients whse cnditins are affected by the type f fd they eat, fr example diabetics. We need t balance the health and well-being f ur patients with the need t share ur resurces fairly. What are we cnsulting with yu abut? The ptins There are three ptins we are currently cnsidering. They are: Limit prescribing fr all patients in Greater Nttingham t fur units f lng life bread and flur per mnth. This will mean that the same prescribing mdel is in place acrss the suth f the cunty, including the city. It is the clsest mdel t the natinal guidance and prvides savings fr the CCG while still enabling gluten free fd t be available n prescriptin. All Greater Nttingham CCGs t stp all gluten free prescribing, with the exceptin f children, wh will be able t receive up t fur units f lng life bread and flur per mnth. This prvides a mre significant saving fr the CCGs while still allwing gluten free prescribing fr children. All Greater Nttingham CCGs t stp all gluten free prescribing. This means the same restrictins will be in place acrss Nttinghamshire (except Bassetlaw). It prvides the greatest financial saving fr the CCGs. Hw are we engaging n these ptins? We d like t hear the views f peple living with celiac disease and dermatitis herpetifrmis and als thse f the wider public. This is because the decisins we must make abut hw best t spend budgets will have implicatins fr all Greater Nttingham residents. We are inviting lcal patients, partners, rganisatins and lcal clinicians t tell us their views n the ptins by cmpleting the questinnaire in this dcument r nline. We will be prmting the cnsultatin via scial media, media and via cmmunity grups. We have prvided GP Practices and ther lcal rganisatins with surveys and cnsultatin infrmatin. We will als be at events ver the next six weeks and available t talk t peple. Yu can find ut mre abut these events at: www.nttinghamnrtheastccg.nhs.uk/nhs/gluten This cnsultatin will run fr six weeks frm Thursday 14 June t Thursday 26 July 2018. Gluten is nt essential t peple s diets and many basic fds such as vegetables, ptates, meat and rice are naturally free frm gluten. Many gluten free alternatives are als nw widely available t buy in supermarkets and health fd shps. Given the ever-grwing pressures n NHS services and budget, we must ensure we get the best value fr taxpayers mney. We d understand the prpsals t limit, r withdraw, gluten free fds n prescriptin may have an impact n sme patients with celiac disease. That s why we are keen t hear as many views as pssible t help infrm ur decisin. Dr Hugh Prter, Chair, Nttingham City Clinical Cmmissining Grup

If yu wuld like t cmplete this survey nline, g t: www.surveymnkey.cm/r/gn-gluten-free We can prvide this dcument in ther languages and frmats, such as Braille and large print, n request. Please ask smene wh speaks English t ring 0115 912 3384. 1. This survey is annymus. Please prvide the first part and first number n the secnd part f yur pstcde (e.g. NG5 6). 2. D yu think that gluten free prducts shuld be available n prescriptin? Yes N Dn t knw 3. Which f the fllwing best describes the reasn why yu are cmpleting this survey? I am diagnsed with celiac disease I am diagnsed with dermatitis herpetifrmis I am the parent/guardian f a child with celiac disease/dermatitis herpetifrmis I am a carer f an adult with celiac disease/dermatitis herpetifrmis I am a clinician with an interest in this area fr example a GP/nurse r cnsultant I am respnding n behalf f a grup r rganisatin (please state which grup/ I am respnding n behalf f smene wh has celiac disease/dermatitis herpetifrmis rganisatin belw). I receive gluten free items n prescriptin but dn t have ne f the abve diagnsis I am interested in hw, and n what, the NHS spends its budget Other reasn (please state belw). 4. D yu (r the persn yu care fr) receive gluten free fds n NHS prescriptin? Yes N but I am diagnsed with celiac disease/dermatitis herpetifrmis (g t questin 9) N I dn t have celiac disease/dermatitis herpetifrmis (g t questin 10) 5. Has yur gluten free prescriptin been reduced fllwing previus cnsultatins? Yes (Please g t questin 6) Nt applicable N (Please g t questin 7)

Gluten free cnsultatin 6. What impact has this reductin in units had n yur diet (if any)? N impact/change Impacted n my diet because: Increase in fd bill/unable t manage my diet as well Incnvenience as previusly delivered via pharmacy and nw I have t g and purchase Other (please state belw). 7. Which gluten free prducts d yu receive n prescriptin? 8. If yu, r the persn yu care fr, receive gluten free fd n prescriptin, please tell us why belw (tick all that apply). I have celiac disease/dermatitis herpetifrmis and believe the NHS shuld prvide gluten free fd fr me because f my cnditin I am eligible fr free prescriptins I receive benefits that enable me t receive free prescriptins Gluten free fd is t expensive n the high street/in supermarkets The chice f shps that sell gluten free fd is limited where I live It helps ensure that I have regular GP check-ups Nt applicable Other (please specify belw) 9. If yu, r the persn yu care fr, have celiac disease r dermatitis herpetifrmis but dn t receive gluten free fds n prescriptin, please tell us why nt belw (tick all that apply) I dn t like the fd available n prescriptin I dn t agree with fd being available n prescriptin I prefer t shp fr my wn gluten free fd Nt applicable Other (please specify belw)..

10. Please select which prpsal yu agree with fr the future prescribing f gluten free fds Limit prescribing fr all patients in Greater Nttingham t 4 units f lng life bread and flur per mnth (aligning with the Suth Nttinghamshire CCGs) All Greater Nttingham CCGs t stp all gluten free prescribing, with the exceptin f children, wh will be able t receive up t 4 units f lng life bread and flur per mnth All Greater Nttingham CCGs t stp all gluten free prescribing Other (please state belw). 11. Wuld yu like t make any further cmments in relatin t the prescribing f gluten free fds? N Yes (please prvide cmments belw)...... Please tell us abut yu We are cmmitted t cmmissining lcal health services that are available t all, regardless f age, disability, gender reassignment, marriage r civil partnership, pregnancy and maternity, race, religin r belief, sex r sexual rientatin. We als aim t prmte equality thrugh the services we cmmissin, paying particular attentin t grups r sectins f Greater Nttingham s ppulatin where imprvements in health and life expectancy are nt keeping pace with the rest f the ppulatin. T d this and t help ensure that everyne has equal access t lcal health services, we need t cllect infrmatin abut peple wh use r may use thse services. This is why we are asking yu the questins belw. Answering the questins is vluntary. Any infrmatin yu d prvide will be held in cnfidence and will nt be used t identify yu. What is yur Gender? Male Female D nt wish t disclse Is yur gender the same as the gender yu were riginally assigned at birth? Yes N Prefer nt t say What is yur Ethnic Origin? White: British Irish Any ther White backgrund (including Traveller) Please specify Mixed: Other Mixed White & Black Caribbean White & Black African White & Asian Please specify

Asian/Asian British: Indian Pakistani Bangladeshi Other Asian Please specify Black r Black British: Africa Caribbean Other Black Please specify Other ethnic grup: Chinese Other ethnic grup Please specify What is yur Age? 0 17 18-30 31-65 65 and ver Disability: D yu cnsider yurself t have a disability r lng term cnditin? Yes N Prefer nt t say If yes, please specify What is yur sexual rientatin? Hetersexual Gay Lesbian Bisexual Prefer nt t say What is yur Religin r Belief? N religin ` Bahai Christian Jainism Jewish Hindu Muslim Sikh Prefer nt t say Other (please state) What is yur Marital/Civil Partnership Status? Single Married Civil Partnership Divrced Separated Widwed Prefer nt t say Pregnancy and Maternity Are yu currently pregnant? Yes N Prefer nt t say This cnsultatin will run frm Thursday 14 June t Thursday 26 July 2018. Please return yur applicatin freepst (n stamp required) t: Freepst RTHU-JLJL-LGLT, Patient Experience Team, Civic Centre, Arnt Hill Park, Arnld, NOTTINGHAM NG5 6LU