All Party Parliamentary Group for Diabetes Tweetchat: Education and Support for People Affected by Diabetes

Transcription

1 All Party Parliamentary Group for Diabetes Tweetchat: Education and Support for People Affected by Diabetes In order to increase the transparency of the work of the All Party Parliamentary Group for Diabetes, and to ensure wider participation from people affected by diabetes, Chairman Adrian Sanders MP hosted the weekly #Our Diabetes tweetchat on 19 August to seek input on the APPG s investigation into the state of diabetes education and support for self-management. A summary of responses is included here. A full transcript of the tweetchat can be found at

2 Can t live healthily without Google and DOC! Learned loads frm research participation recommended I loved my carb course too ist time in abt 35 yrs of T1 at that time I felt I had tools to manage my own d Legoless777 I used YouTube to find out how to use bolus wizard on my pump! kat0302 For 21 years, not really anywhere basic info through nurse, dietician and leaflets. Now, mostly #ourd & #doc massive help whipuntilfluffy I ve been T1 for 7 years didn t get that much help when diagnosed (was 16) but since getting DKA 6 times had much more support juggle_pt LOVED DAFNE. No overstatement to say it completely changed my life and got me through two pregnancies. Why are so few offered it? Melissamlf2 Question 1: Where do you currently look for advice and support to help you manage your diabetes? Online Groups like Parents of T1 Teens (Facebook) are valuable for empathetic sharing family to family when something odd happens First and foremost these days I look to pwd for advice and guidance. But only see it as such colonelblighty I went on DAFNE last year. Thought it covered a lot of useful stuff but also lots missing. Eye opener for many on my course Best avail advice is from my DSN or consultant then closely followed by #doc last resort is gp/practice nurse Legoless777 DAFNE good for starters but need to be ongoing Even after 49yrs of T1 I still want to learn and share Peer support = gd I thought Desmond was very good, a lot crammed into two sessions alanprussell We were given loads of leaflets & a book on how to carb count on dx sherwoodzs Spent the morning at X-pert #Diabetic programme at #Birmingham #City hospital. Well worth attending! khakanqureshi On the #doc as it s quick for advice and suggestions.. good support #ourd no leaving msg for a call back from clinic kat0302

3 Better information about new tech would be eg: strip-free testing. Only found them had one! benpmoody The support offered to my parents was close to zero le3ky So easy to sit back after decades with T1 and not realise things are moving on V fast VITAL that older T1Ds are educated DAFNE was good but I would like one specific for the pump Lwsweetpea88 There s a huge hole in helping deal with the emotional impact of diagnosis & the journey of exposure to realities of D complications I was expecting month after dx of type 1 & was full on scans, visits to consultant, hospital then felt quite alone greattobe40 I haven t heard of, or been offered any training for my family. Never in 17 years le3ky There s nothing on CGM Question 2: What gaps are there in the current provision of education? What other training & support would you or your family find useful? It scares me seeing education for older pwd bad_diabetic How to manage stress and emotions that come hand in hand with diabetes is needed. It affects so many, daily ninjabetic1 Stuff for kids / parents oceantragic I have Type 2 friends asking me for advice but it s hard because T1 and T2 are so different melissamlf2 I think emotional and mental well-being is completely missed and peer-support networks rarely discussed Well the big gap was that my own local PCT did not provide education. Had to fight 2 yrs to get DAFNE elsewhere Nixy_b There r no courses for paeds or carers #ourd why can t DAFNE be tweaked for CYP/carers? sherwoodzs Nothing around for parents or CYP colonelblighty We hear a lot that education isn t offered to under 18 s

4 I liked the DAFNE approach. Sitting in a class room full of Diabetics was really educating & you no longer feel alone with your diabetes Nixy_b Better advertising and access to it and from pwd &people who support them daily like parents/family would be great kat0302 I m horrified by scary language in literature given to T1 teens help reduce risk of amputation. Co-creation with parents please Went on a few [JDRF Discovery Days] as a kid and they were absolutely FANTASTIC for myself and my parents. Camps too whipuntilfluffy Clinic or education programme? NHS based on need or want? Always tricky parthaskar In a former life did recognised Food Hygiene Course online would love to see slick + engaging ones for t1d benpmoody We offer buddy list to try and encourage uptake hardeepgrd Peer advice from people with experience is very handy For younger people it might be good to promote it as a more social thing as well as education? _charlottela_ Question 3: How should education and support best be delivered and by who? In Hampshire I m involved in setting up a buddy system. Buddies will provide lay education to newly diagnosed ninjabetic1 I think this is where #ourd comes in handy. There s always someone who has tried something new Face to face = vital component! Start online then meet to discuss/get support? Training from others with T1D who know what it s like to live with it. Peer to peer education diabeticbanana I would like more equalities monitoring of care & education for pwd. My Granny s care as T2 on insulin is awful superchowchow Please more DAFNE training for all HCPs. Just the basics so everyone understands melissamlf2 Just joined a new clinic, they actually offer Saturday courses for those of us who work! Le3ky

5 T2s going on insulin no education available as far as I know? Left to GPs to do training? rosamundsnow1 I know about national programmes because I ve researched them. Sheffield are good at saying what s available, esp. refresher courses What is a Desmond course, and after more than 6 years since diagnosis do I still need it? MaliyahSunset Confident. Lucky enough to be in the care of London teaching hosp they re interested, funded & progressive sallyrose_ not very confident. info online mainly let s me know what is available/new. always keeping an eye out kat0302 I ve been type 1 for 12 years and don t know what DAFNE or DESMOND are, never even been mentioned to me mosleyowl Question 4: How confident do you feel that you know what diabetes education and support is available to you both locally and nationally? Where do we find out about new tools, techniques, things on the horizon? le3ky As per data lots don t attend offered programme too. Needs awareness raising. 2 way street parthaskar We have a 95% DNA rate atm : ) to me that shows its not right for the patients bad_diabetic Been told that DAFNE is no longer appropriate for me now pump user can anyone tell me whether that is true? Feel like I d benefit whipuntilfluffy Not really sure what is available locally as I only see my GP in my area and I have to travel elsewhere for my proper D care nixy_b I d also say HCPs need to better sell the education that s on offer & reasons why it s useful to attend maybe past pts advocating My DAFNE team say they ve run out of volunteers to teach. A T1 friend elsewhere keeps asking for DAFNE with no luck melissamlf2 Can t find any DESMOND courses in Bristol, just checked NHS website james_scarratt Check out the online carb counting ebook It s a good guide

6 Feeling less alone is a real confidence builder. Encourages people to become more empowered and self educating Feel we could be getting much better education on supporting our T1 daughter & that direct education for her is dangerously piecemeal Does anyone know the reasons why the stats for education are so horrendous? How come so few are offered it? melissamlf2 Peer support is vital and saves NHS s Why don t clinics promote it more and support it? Fear probably In general docs seem to find it hard to understand how difficult it is to attend medical stuff if you work full time rosamundsnow1 Via finding twitter myself I ve found #ourd #doc and info & more! Never been suggested at clinic Kat0302 Other Comments I was dx d incorrectly in 2011 and correct dx [with type 1] in When I initially left hospital I was told just eat healthy Too much ignorance of basics out there rosamundsnow1 Structured education should be provided as standard hardeepgrd On the subject of education let s not forget the HCPs also need a programme of training and refreshers too colonelblighty Better education, with tracking and personalisation would surely save the NHS 10 s of millions. Billions over lifetimes Got to think of HCPs too Limited time/have life too parthaskar My anxiety was through roof after dx of type 1. I feel I needed some help Greattobe40 The big problem is the huge lack of funding for education delivery. Ed is vital to self-manage safely & well ninjabetic1 Glossary: DOC: Diabetes Online Community pwd: people with diabetes #ourd: Our Diabetes dx: diagnosis CYP: children and young people d: diabetes