22 Diabetes
Ground-breaking Survey into Living with Diabetes Diabetes Ireland launched the results of the first-ever survey highlighting the lived experience of people with diabetes in Ireland. An anonymous online survey of adults with diabetes or parents/ carers of children with diabetes was conducted between 16 January and 5 February 2023 via social media and standard online communication to ask about experiences of living with diabetes in Ireland. 517 people completed all sections of the survey: 230 adults with type 1 diabetes, 155 with type 2 diabetes and 12 with other types of diabetes, and 120 parents/carers. Amongst adults, 37% reported they were already living with diabetes-related complications and comorbidities. Most commonly these were hypertension (high blood pressure - 23%), diabetes retinopathy (23%), hypothyroidism (17%) and mental health-related issues (14%). During their lifespan living with diabetes, both adults & children living with type 1 diabetes had experienced severe complications: 40% had experienced DKA, mainly at the time of diagnosis, which should be avoidable if diabetes symptoms were recognised early; and 45% of adults experienced at least one episode of severe hypoglycaemia – a critically low glucose level, which usually comes with unconsciousness and requires third party help and possible hospitalisation. In terms of their ongoing care, the majority of respondents were cared for in the public system but 20% of people with type 1 diabetes and 46% of those with type 2 diabetes pay privately for diabetes care. Only 13% of adult respondents had no review appointment with their healthcare provider in 2022 with a further 29% having only one appointment. However, all children with type 1 diabetes had at least 2 or more appointments in the same period, with 67% of them having 3 appointments or more. Overall, respondents expressed satisfaction with their diabetes care, but many highlighted the lack of time given to them by their diabetes healthcare provider and felt the appointments were rushed. The vast majority of respondents (88%) are under the Long-Term Illness Scheme, giving them access to free diabetes related medications and technologies plus free high blood pressure and high cholesterol medications.
Interestingly, when comparing Dublin with the rest of the country, there were a number of noticeable differences in people’s daily experience of living with diabetes. More often, people with type 1 diabetes pay privately for their diabetes care if they live outside of Dublin (19% vs. 10%). Among people with type 2 diabetes, those from outside of Dublin were usually receiving their care in general practices (75% vs. 55%). People from Dublin more often were treated in outpatient diabetes hospital clinics (27% vs. 20%) or attended diabetes clinics privately (13% vs. 5%). Among adults living with type 1 diabetes, those living outside Dublin were more often diagnosed with diabetes related complications or comorbidities (41% vs. 35%). Among people with type 2 diabetes, those living outside Dublin more often had increased occurrence of diabetes-related complications or comorbidities (48% vs. 20%), mainly hypertension (40% vs. 18%) and mental health related issues (24% vs. 15%).
hear from people with diabetes about difficulties in accessing diabetes care services and new technologies across the country. However, we had no real data on this, so we decided to undertake this survey and provide an opportunity for people with diabetes to share their experience of accessing services and living daily with the condition. This survey is the first of its kind in Ireland, and in the absence of a National Diabetes Register and Clinical Audit, it provides very detailed information about experiencing diabetes care by those affected by diabetes in Ireland.” Alongside the release of the survey findings, Diabetes Ireland is also launching its Pre-Budget Submission 2024 calling on the Minister for Health to set up a Taskforce, similar to the Cancer Strategy Taskforce to develop a 10-year National Diabetes Strategy to improve and standardise the delivery of care, access to diabetes services to improve the quality of life of more than 300,000 people living with diabetes in Ireland.
challenge for the government and the Health Service Executive. The high cost of diabetes is mainly caused by the treatment of complications, many of which could be avoided with earlier detection, greater awareness of symptoms, better access to newer treatments and diabetes technologies, multidisciplinary teams, including psychologists, and regular diabetes review appointments. Despite the positive ongoing work of the HSE and Sláintecare, there are still many gaps in current diabetes services, as highlighted by this survey, that need to be tackled strategically in order to provide optimum diabetes care to everyone in need. Therefore, to improve diabetes care, we need to collectively act now and decide what future care for people with diabetes will look like. “The Cross Parliamentary Group on Diabetes agree that it is time to set up a diabetes taskforce of relevant stakeholders to develop a 10-year National Diabetes Strategy that provides vision, leadership, direction, goals, and priorities, as well as identifying and securing the future funding required to provide optimum care for every person living with diabetes in Ireland. We know this will take some time, but we need to be very forward thinking
Overall, the rates of technology Cormac Devlin TD, Chairperson usage (CGM) were very high and of the Cross Parliamentary Group there were no differences between on Diabetes said: “The economic Dublin and the rest of the country burden of diabetes on the Irish with insulin pump usage also healthcare system is now a major been similar. However, in openended responses many people referenced very long waiting LIVING lists and difficulties in accessing WITH DIABET ACCES ES IN IR SING A diabetes-related technology, ELAND ND USI : FIND NG DIA INGS FR THE N BETES EED FO OM TH mainly insulin pump therapy, as HEALT R A 10 E SURV H SERV -YEAR EY ON NATIO ICES B EXPER W NAL D Di Y PEO hy? well as difficulties D: chro abetes can be IENCIN IABETE LAN PLE W IRE IN E S STRA G, nic cond a relent ITH DIA DIABETES CAR TEGY le iti ss on BETES IN IREL 4their families. , affecting pe and burdenso 202 in accessing N . SIO A MIS ND m It’s estim ople of e people al PRE-BUDGET SUB at the l liv ed ag and e ent es that ap with di ernm and on the Gov abetes prox. 30 calls Pe nd specialist Irela op To in Irela le have gether 0,000 How? ity, Diabetes nd. inclu with he to lf2024 da ily (edes: diabetes commun and academ .g. adapimprse althca re that Budget anagss ovemacce On behalf of the re prof to t to nu e diab ics and Health to ensu Stra ect tegy multidisciplinary essiona etes inj etes trithan Department of insuli people conduc tional 300,000 ls, rese ear National Diab advice, living wi ofecmore ted a su 365 da beinn,gch THE SU archer k glucos develop a 10-Y take m th diab rvey to ys a ye - Living s, ), health and well a Taskforce to RV e (QoL up le] le ed life set EY etes we ligib of ask ab ve to ar ici s ity Neg with di ls etc.) nes, 1) Cost team members ds [Cos, t:with no br out: To se frien abetes ices, improve qual and 7 days rs TO serv for loye lfM ), care ea O emp an m etes (CGM rs, since di L anage itoring ks or ho a week agemen accegluc delivery of diab ose mon their di , lidays. their families, care agnosis t ss nd, us of Irela to in inuo di Di cont abet health abetes abetes on] diabetes milli es we t: €5 multid (e.g. dietitians, any form of a ca [Cos to ca s. ss people living with re ll, eline re acce guid re pr is receive ove - Diab nal ciplinar gular ofessi etes ch d of €5 m to impr onal su nal and internatio educat y team eck-up 2) Investment pport, mmended by natio s (MDT ion, an - Appo s intmen nual re ), diab 1 diabetes as reco podiatrists, their lif ts in 20 etes views, people with Type We aske estyle 22. treatm and ne d adult from co ent th eds an s living parent m at pl ic su d wi s of ch psychologists etc). ations keeps its th diab ildren We ofte , are ab them sa etes (a Peop wi Charity
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Generally, people rated their health and well-being as good, but one-third assessed it as poor/ very poor. 75% of respondents reported that they do not discuss mental health & wellbeing as part of their diabetes care with half welcoming an opportunity to do so.
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