Reforming diabetes care in care homes: training, collaboration, and compassion
Navodi Kuruppu spoke with Lynne Reedman, Founder and Service Lead for DUET Diabetes, and Martin Scivier, diabetes patient and advocate, and #dedoc° member, to discuss the impact of Covid-19 on care home residents with diabetes, the importance of peer support, and the urgent need to prioritise care for vulnerable and older populations.
In 2020, the first wave of the Covid-19 pandemic had a devastating impact on care homes in England; with over 40 000 residents dying by the end of 2021, 97.8 per cent of whom were aged 65 and over. Numerous investigations and the ongoing Covid inquiry have already highlighted major shortfalls in care homes, including lack of testing and personal protective equipment (PPE) for residents and staff. [1][2]
Delivering quality care during the pandemic was an even bigger challenge for residents with long-term conditions like diabetes. A skill gap in diabetes care among staff and deficiencies in technologies resulted in a lack of clarity and coordination regarding who to contact for immediate help, which led to preventable hospital admissions and increased mortality.[3] However, these deficiencies were not the result of the pandemic, but rather pre-existing gaps in the system that the Covid-19 crisis exposed and exacerbated.
Training of staff in social care is fundamentally important says Lynne Reedman
At least one in four care home residents currently has diabetes, however, an estimated 13,500 care home residents live with undiagnosed diabetes.[4] By 2050 the number of people aged over 85 is estimated to exceed eight million in the UK, which is likely to place additional strain on the social and residential care sectors.[5]
Lynne Reedman founded DUET Diabetes in 2015 from a desire to improve the understanding and knowledge of those looking after adults with diabetes. Designed to improve the skills and confidence of carers, nurses and healthcare support workers and the standards of diabetes care they provide, DUET Diabetes seeks to address knowledge gaps that were brutally exposed during the pandemic. Lynne argues that to solve these challenges, social care must be guided by three key principles that DUET Diabetes champions: communication, collaboration and education.
The 2022 National Advisory Panel on Care Home Diabetes (NAPCHD) was established to address the root causes of inadequate diabetes treatment in care homes. Their report identified several issues, including a lack of knowledge of key principals of ethical diabetes care on the part of care home staff, diabetes care teams and social services; ethnicity-related challenges in clinical care; and the importance of residents’ emotional wellbeing – all of which led to poor management of diabetes complications.[6]
Lynne observes that many team members including nurses in care homes lack a basic knowledge of diabetes best practice, reiterating the fact that diabetes training is currently not mandatory for care home staff. She says, when you talk to [the staff], a lot of them don’t have much confidence or knowledge [of diabetes care].
Residents shouldn’t have to wait for a district nurse to come in and manage their diabetes. We need a care sector that knows and fully understands diabetes and knows how to support these people.
Lynne Reedman, Founder and Service Lead at DUET Diabetes
Lynne strongly advocates for the implementation of a basic diabetes awareness programme across the social care sector, coupled with extra training to enable staff to disseminate knowledge within their own organisations. The NHS Diabetes Prevention Programme (DPP), along with campaigns organised by Diabetes UK and other organisations around the country, has played a central role in raising awareness at both national and local levels. Lynne’s proposal is innovative, in that it considers the combined needs of diabetes and social care, with the aim of supporting an all-around prioritisation the condition that is necessary to bridge the gaps specifically found within social care. You have to treat a person as a whole in care homes, she insists, and the care has to be tailored to each resident.
The NAPCHD proposes a multi-disciplinary model, focusing on collaboration between care homes, community and specialist services, primary care, and other key stakeholders. Within this model, the resident with diabetes is placed at the centre, supported by a nurse-led facilitator from the GP-Primary Care Unit and adult social services. Local Primary Care Networks (PCNs) would play a key role in supporting this service, by deploying existing primary care nurses with diabetes experience into facilitator roles, following additional training. While funding for this model may require agreements across multiple agencies, health economic studies are anticipated to demonstrate its cost-effectiveness, showing reductions to hospital admissions, ambulance callouts, GP visits, and medication expenses.
Using insulin pens, checking expiry dates, monitoring technology devices, maintaining a good diet and level of physical activity – there is a lengthy list of a daily actions that diabetes patients must juggle. These challenges are compounded for older patients with diabetes, who may encounter more difficulty caring for themselves daily. Studies have shown that diabetes may decrease mobility and restrict activities of daily living (ADL) by approximately 50-80 per cent, with this decline becoming more pronounced with age.[7]
One important aspect that the review does not touch upon is the role of peer support in diabetes care for older patients. Whether in a care or nursing home, emotional support is just as important as physical care.
Martin Scivier, a diabetes advocate, fully recognises the power and value of peer support. Now 75, Martin was diagnosed with type 1 diabetes (T1D) in 1954. Seventy years later, he feels healthy and lucky, having experienced only a few diabetes-related complications. To give something back to the diabetes community, Martin started running his own blog, Martin Scivier’s Mellitus – Type 1 Diabetes, in 2022, documenting his journey and experiences with T1D.
When I go to the hospital for appointments, I just sit there in the corner and don’t talk to anybody, I keep myself to myself. And then I see the nurse, see the doctor, and then I go out and go home. But thanks to social media I have found this wonderful diabetes community and started to get involved. Thanks to peer support, I am not on my own
Martin Scivier, Diabetes Advocate and T1D Patient
In 2018, Martin joined social media, finding many self-help groups on Facebook, Twitter and WhatsApp, such as the #GBdoc hub. I never went to diabetes camps when I was younger, so I used to be very much on my own, recalled Martin, but now I have all these new friends. This peer support acted as a hugely important space for Martin to feel supported and comforted after his regular check-ups at the hospital.
Martin’s story is testament to the power of peer support and its capacity to provide a safe space where patients like him can find comfort in sharing their experiences, feel supported and be reassured they are not alone. Martin has an optimistic outlook on the future, which he aims to realise through his advocacy and engagement with organisations like PPP. However, he was quick to acknowledge that many others are not as fortunate as him.
Older people need and deserve more says Martin Scivier
The NAPCHD strategic document acknowledges that many care home residents are highly vulnerable, and their diabetes condition is often worsened by complications, including uncontrolled hyperglycaemia, hypoglycaemia, which can lead to eminently preventable hospital admissions. It is estimated that 75 per cent of people with diabetes die because of cardiovascular complications, many of which could be prevented.[8] We have lost too many people along the way because of complications [of diabetes], adds Martin.
However, the condition and complications are often compounded by another factor – loneliness. Age UK has reported that around 1.4 million older people often experience loneliness each year in the UK.[9] Another study has found that loneliness is a bigger risk factor for heart disease in patients with diabetes than diet, exercise, smoking and depression.[10] Loneliness can also lead to decreased daily activity, contributing to increased inflammation and blood pressure, cognitive and motor decline, anxiety and depression.[11] Healthcare systems and providers must recognise that loneliness is a significant risk factor, affecting both psychological and physiological health outcomes, as well as health-related behaviours of older adults with diabetes.[12]
Martin shares Lynne’s belief that better training leads to better care. He recalled the 2016 education model run by Benikent within Swale CCG to improve diabetes management in care homes.[13]
Through this model, unregistered practitioners in care homes were trained diabetes management to improve diabetes care and delegation of insulin, ultimately seeking to provide individualised care plans and appropriate diabetes-specific training for all staff in the care. [14] Martin argues that this proves to me 100 per cent that any training is better than no training. But compulsory training would be brilliant.
PPP’s Diabetes Care Programme seeks to bring different stakeholders to the table. Hearing the stories of patients with lived experience of diabetes, together with the perspectives of experienced professionals, makes clear the importance of person-centred diabetes care. This approach supports both the medical aspects of the condition, such as managing complications, reducing hospitalisations, and lowering mortality rates among the elderly, as well as the human elements of treating patients fairly. As described by Martin, patients deserve to be treated with dignity and respect.
An individual should be cared for with dignity and respect. Their rights should be paramount.
Martin Scivier, Diabetes Advocate and T1D Patient
To learn more about how to get involved in the 2025 Diabetes Care Programme, visit the website here.
References
[1] https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-homes-impact
[2] https://www.amnesty.org/en/documents/eur45/3152/2020/en/
[3] https://onlinelibrary.wiley.com/doi/full/10.1111/dme.15088
[4] https://www.carehome.co.uk/advice/managing-diabetes-in-older-people
[5] https://www.diabetes.org.uk/for-professionals/improving-care/good-practice/diabetes-care-in-care-homes
[6] http://fdrop.net/wp-content/uploads/2022/05/FINAL-NAPCHD-Main-document-for-FDROP-website-08-05-22.pdf
[7] https://www.england.nhs.uk/north-west/wp-content/uploads/sites/48/2023/03/Healthbox-Diabetes-Care-Home-Guidelines.pdf
[8] https://www.england.nhs.uk/north-west/wp-content/uploads/sites/48/2023/03/Healthbox-Diabetes-Care-Home-Guidelines.pdf
[9] https://www.ageuk.org.uk/our-impact/policy-research/loneliness-research-and-resources/
[10] https://sph.tulane.edu/study-loneliness-heartbreaker-diabetics , https://academic.oup.com/eurheartj/article/44/28/2583/7190012?login=false
[11] https://pubmed.ncbi.nlm.nih.gov/26799166/
[12] https://doi.org/10.1080/13548506.2023.2299665
[13] https://diabetes-resources-production.s3-eu-west-1.amazonaws.com/diabetes-storage/migration/pdf
[14] https://diabetes-resources-production.s3-eu-west-1.amaz…2520in%2520care%2520homes%2520in%2520Swale%2520%28June%25202016%29.pd
