Anglia Ruskin University Diabetic Retinopathy Awareness and Prevention Programme (ARUDRAPP)
Working with more than 1,800 patients in the UK, Thailand, Nepal, China and India, we have shown that higher levels of sight-threatening diabetic retinopathy in South Asians is associated with poor health literacy, language barriers and lower uptake of retinal screening.
Our research also demonstrates that different barriers for diabetic control exist in different demographics (eg., age, literacy, gender, culture) and that a ‘one size fits all intervention’ does not work efficiently.
We have developed and disseminated evidence-led, culturally and linguistically appropriate diabetic and diabetic retinopathy awareness workshops (in Hindi, Urdu, Nepali, and English) in collaboration with a number of stakeholders from UK, Nepal and India. These have led to behaviour change and improved outcomes in more than 110,417 people in the UK, India, Nepal, China and Thailand. This is evidenced by an 87–98% uptake of retinopathy screening from a baseline of 20–36%, and a reduced risk of blindness by 60–90%.
Professor Shahina Pardhan
Dr Raju Sapkota
Our collaborators
UK
- Mr. Ghulam Shabbir, Chairman, Pakistan Community Association of Peterborough
- Dr Dilip Kumar Yadav, Health Coordinator (2017-2019). Non-Residential Nepalese Association (NRNA), UK
- Mr Lil B Thapa, Chairman, Shanti Nepalese Community, Birmingham, UK
- Mr Bharat Thapa, Chairman, Nepalese Community, Hayes and Harlington, London
- Mr Harish Jyawali, General Secretary, Bexley Nepalese Community, London
- Mrs Asma Sajid, Dietician, Cambridgeshire and Peterborough Foundation Trust
- Mrs Yasmin Ilahi, Manager, Gladstone District Community Association (GLADCA), Peterborough
- Mrs Qamar Nizam, Trustee, Khidmat Sisters, Cambridge
- Mr Tulat Raja, Cambridge City Council
- Mr Mohammed Hanif, General Secretary, Birmingham Central Mosque, Birmingham
- Mrs Rokeya Noor, Project Co-ordinator, My time Active, London
- Mrs Fatima Nessa, Project Co-ordinator, Shanthona Women’s Group, Luton
- Dr Manzar Saeed, Consultant Ophthalmic Surgeon
- Mrs Fauzia Sattar Occupational Therapist, Cambridgeshire County Council
- Dr Afshan Salim, Diabetic Lead, Birmingham
- Dr Hena W Haque - Health Promotion Professional, Cambridge
Nepal
- Dr Robin Maskey, Vice-president, Diabetes and Endocrinology Association of Nepal (DEAN)
- Dr Bhojraj Adhikari, Vice-president, Nepal Health Research Council
- Dr Tirthalal Upadhyaya, Endocrinologist, Gandaki Medical College and Teaching Hospital, and Diabetes, Thyroid and Endocrinology Care Centre, Pokhara
- Mrs Tara Sharma, Dietician, Gandaki Medical College and Teaching Hospital, Pokhara
- Mr Niraj D Joshi, President, Nepalese Association of Optometrists
- Dr Hara Maya Gurung, Ophthalmologist, Himalaya Eye Hospital, Pokhara
- Professor Nirmal Lamichhance, Director, Bhuvana-Govinda (BG) Hospital and Research Centre, Pokhara
- Miss Pratiksha Chalise, Research Assistant, Diabetes, Thyroid and Endocrinology Care Centre, Pokhara
India
- Lions Club International Programme
- Medical Research Institute Chennai
- Professor Rajiv Raman, Ophthalmologist, Sankhara Netaralaya Hospital, Chennai
- Dr Anupama Biswas, Kurseong Sub-divisional Hospital, Darjeeling
Workshops/diabetic training programmes
We run workshops in the UK and internationally to improve awareness of diabetes and diabetic retinopathy.
Programmes in the UK
Working with various stakeholders, we hold diabetic retinopathy awareness programmes in community centres, religious festivals, mosques and community gatherings in cities that have high prevalence of South Asian population. These have been delivered collaboratively (with VERI) by the following communities (with joint membership of over 15,150 people):
- Non-Resident Nepali Association (NRNA), UK, 25 May 2018
- Non-Resident Nepali Association (NRNA), Aldershot, 26 May 2019
- Pakistan Community Association of Peterborough, 17 June 2019
- Nepalese Community of Hayes and Harlington, 22 September 2019
- Nepalese Society (Shanti Nepali Samaj), Birmingham, 14 October 2019
- Bexley Nepalese Society, 8 February 2020
- Gladstone District Community Association, Peterborough, 18 February 2020
- Khidmat Sisters, Cambridge, 5 March 2020
- Shanthona Women's Group, Luton, 9 March 2020
- Syrian refugees, Cambridge, 3 July 2020
- Non-Resident Nepali Association on the impact of COVID-19 on diabetes and diabetic eye health, 19 July 2020 (online event)
- Birmingham Central Mosque (2021)
- My Time Active in London (2021)
- Nepali Community, Nottingham (2021)
We have further workshops planned:
Peterborough
Right: Professor Pardhan talking about diabetes and its eye complications to members of Pakistan Association Community of Peterborough, June 2019
"We will share this knowledge and awareness about diabetes and importance of attending retinal screening to our family members and friends who have diabetes."
Members of the Pakistan Association Community of Peterborough at VERI's workshop about diet, good control of diabetes and retinal screening uptake to reduce the risk of diabetic retinopathy, February 2020.
"I now know that I should go for eye screening."
"Please can we have some more of these sessions?"
Aldershot
Dr Sapkota talking to a resident about diabetes and diabetic retinopathy at an annual health camp organised by Non-Resident Nepali Association UK, May 2019.
"We were ignoring letters by doctors inviting to have regular eye check-ups, but we will not ignore then now - we have now had our will have our eyes photographed and we will continue to do so on a regular basis."
Hayes and Harlington, London
"We now know that diabetes can damage our eyes silently. Therefore, we will not ignore any letters that are sent to us asking to attend diabetic eye examinations."
Birmingham
"We did not know that if diabetes is not controlled, the back of our eyes can bleed and our vision will be disturbed significantly."
Bexley and Welling, London
Participants at a diabetic workshop organised by Bexley Nepali Society, London, February 2020
"We did not know that diabetes can become worse if we are stressed and that we can go blind if diabetes is bad."
"I did not know that there is a difference between having my eyes tested for spectacles and for diabetes - I know now."
To help improve awareness of diabetes and diabetic retinopathy, VERI staff have been interviewed by ITV Anglia, the College of Optometrists podcast, Salam Radio, online services (OS) Nepal.com, British Force Broadcasting Service (BFBS) Gurkha Radio and Nepali Association in the UK. These interviews, which were also broadcast on social media, have been viewed more than 25,000 times.
Programmes in Nepal
VERI held the first multidisciplinary workshop for professionals involved in the management of diabetes and eye complications in Pokhara on 29-30 October 2018. This saw the development of a framework for a culturally-appropriate, multidisciplinary intervention programme to control diabetes and reduce blindness due to diabetic retinopathy. The programme is being delivered through the Diabetes, Thyroid and Endocrine Care Centre, Pokhara and the Nepalese Association of Optometrists in different provinces and villages of Nepal.
The VERI team with practitioners in Nepal
"This has led us to target those patients who are more at risk of blindness."
Dr Sapkota (VERI) and our collaborator in Nepal, Dr Upadhyaya, were invited by the Lions Club of Pokhara, Nepal to mark World Diabetic Day on 14 November 2019. Informed by VERI’s recent research publication on sight-threatening retinopathy in patients most at risk, Dr Upadhyaya talked about the culturally appropriate diabetic diet, exercise, lifestyle, and need for attending diabetic eye check-up to more than 100 members of the public.
"This work has led to improved strategies ... we need to address the different barriers for an illiterate female compared to a younger working male."
A clinical trial is being conducted to see how training videos help to improve people's awareness about diabetes and diabetic retinopathy screening.
VERI researchers and collaborators at the Diabetes, Thyroid, and Endocrine Care Centre, Pokhara, Nepal
We are also conducting community workshops in different villages of Nepal on how to improve control of diabetes and reduce the risk of diabetic blindness in collaboration with the Nepalese Association of Optometrists.
Pratishka Chalise and Deepika Karki from VERI delivering a retinopathy awareness programme to diabetic patients in Nepal
"We did not know that diabetes can lead to blindness."
VERI researchers Dr Sapkota and Dr Upadhyaya were invited by the Lions Club of Pokhara, Nepal to mark World Diabetic Day on 14 November 2019. Informed by VERI’s recent research publication on sight-threatening retinopathy in patients most at risk, our lead collaborator in Nepal (Dr Tirtha Lal Upadhyaya) talked about the culturally-appropriate diabetic diet, exercise, lifestyle, and need for attending diabetic eye check-up to more than 100 members of the public. This was very well received by participants.
"We learnt new knowledge about diabetes by attending the event, which was presented in simple Nepali language."
"We now know that diabetes can cause blindness, so we will not neglect to go to an eye doctor for check-ups."
Programmes in India
Chennai
Right: Professor Rajiv Ramen from Sankara Nethralaya, Visiting Professor at VERI
Our collaboration with Sankara Nethralaya Hospital (Chennai) led to development of a bespoke one-to-one counselling service for patients with sight-threatening retinopathy to explain the importance of regular attendance and treatment.
"This has already improved attendance for retinopathy screening and reduced risk of blindness in 90% of all the patients with sight-threatening retinopathy."
Darjeeling
Right: Doctors, nurses and patients at the VERI workshop in Darjeeling
Kurseong sub-divisional hospital (Darjeeling) have worked with us and use our training videos to improve awareness about diabetes and diabetic retinopathy in their patients.
"We thought our own herbal medicines are enough - now we know that we need to take the medicine given by our doctors."
"We will go and have a diabetic eye check today - we don’t want to go blind by delaying it..."
"I should go to my doctor instead of traditional healers for my diabetes."
Programmes in China
Our collaboration with Second Affiliated Hospital in Hangzhou in the eastern region of China, serving 600,000 outpatients annually from a catchment area of greater than one million square kilometres, has led to the development of strategies to address the significantly high profile of diabetic blindness in patients attending the eye clinics.
"This has highlighted the lack of awareness amongst diabetic patients on how important it is to look after their diabetes."
Programmes in Thailand
We are collaborating with Rajavithi Hospital in Bangkok to tackle the current low levels of retinal screening uptake by diabetic patients in Thailand.
Publications
A full list of VERI publications, including on diabetes and diabetic retinopathy, can be found on our publications page.
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