Winter Warmers: a project to address fuel poverty
Dr Jane Rowley
Members of Trent Dementia ran a collaborative project to trial, source and provide items to help members and their families keep warm through the winter months. Jane Rowley describes how the project was planned and implemented
Trent Dementia is a small charity based in Nottingham that provides support to people living with a diagnosis of dementia and family caregivers across the East Midlands. We have a small team of three part-time staff and a dedicated group of trustees. Our focus is on empowerment, co-production and collaboration with people affected by dementia. All the projects in our Empowerment Programme are developed through co-production with those directly affected by dementia. We refer to the people we support as members and consider them all as members of our team. We offer scaffolding and support to enable members to establish and facilitate their own peer groups, walking groups, drop-in sessions, craft sessions (both online and face to face), in addition to outings throughout the year. Unique to the members’ activities is the way they contribute to planning, organisation and running of Trent Dementia’s annual conference. Members decide upon the theme or the conference message and design its programme, also choosing whom to invite to ‘hear’ their message.
Key points
· A collaborative project to develop winter warmer packs for families affected by dementia.
· Product testing by members to and the most helpful items
· Bespoke packs to meet individual needs
· Addressing fuel poverty by helping people to insulate thier homes and keep warm when out and about
· Starting a conversation about other ways to stay warm.
Members have told us throughout the year of their angst about the rising costs of utility bills and worry about how they will keep warm through the winter months. They have told us about how people ride for hours on buses and use cafes and libraries to keep warm. We know that people often only heat one room at home and that they worry constantly about their bills or ‘topping up the meter’.
We successfully applied for a grant from The National Grids Community Matters Fund to develop winter warmer packs. Our intention was to make these packs bespoke, so that they met real people’s individual needs, rather than just supplying a kit of standard items. The first step was to discuss with our members about possible content for bespoke packs to meet the individual needs of our members. The grant aimed to help people in the coldest months, so we had three months to agree on the contents of the packs, buy the items and distribute them to members. Members were asked to consider what type of items they might find useful and, concurrently, staff members researched various options.
We first purchased a range of samples for home insulation items, for example radiator foil and draught excluder tape, bowl warmers, warm hats, diverse types of scarves and gloves. We invited some members to lunch and distributed these items for product testing. After a month of use they advised us which items were most helpful, and which were more difficult to use or were not Winter Warmers: a project to address fuel poverty Members of Trent Dementia ran a collaborative project to trial, source and provide items to help members and their families keep warm through the winter months. Jane Rowley describes how the project was planned and implemented helpful at all. For example, they told us the design of the bowl warmers (a quilted pad to hold bowls and maintain heat) was not popular and the radiator foil, although popular, was difficult to install. They told us that the neck warmer they trialed was too heavy, especially if the person was frail. So, we went away and investigated assorted designs for the bowl warmers and different tapes to install the foil pads behind radiators to make them easier to use.
A simple survey
We then developed three categories of items with the members involved in product testing: ‘Energy Savers’, ‘Out and About’ and ‘Keeping Toasty’. We developed a simple survey and distributed hard copies of these across our membership, with them nominating one person from each peer support group to collate and return the survey forms. This is a key learning point because, even when people are able to use online surveys, we know they prefer hard copies, so we distribute these and complete the online survey ourselves from their data to provide an analysis of what people have asked for. We asked people what they would find useful. However, we also indicated that we could not guarantee they would receive all of the items requested as we had to be guided by overall demand and the budget available.
Once we had a clear picture of the most popular items, we began to purchase them by bulk buying to gain the best value. Items purchased included draught excluders, draught excluder tape, radiator foil, LED lightbulbs, fluffy gowns, and blankets. In addition, we purchased distinct types of gloves, hats, and scarves. People with differing mobility often found lighter fleece scarves easier to use, whereas family carers supporting people with dementia found neck warmers to be more helpful as they are easy to help someone wear and do not easily drop off. We also asked people what other items they might find useful, and these included slow cookers, electric hot water bottles and hand warmers.
Our distribution started in early February 2024 and in March we will run a winter warmers workshop to seek feedback on what members have found useful and what they think might help in future winters. We plan to create a resource of top tips for staying warm as well as their review of the items used this winter to distribute throughout the year. We are also partnering with another charity who provide energy saving advice to offer a further workshop.
Direct consultation is vital
We understand that it is vitally important to consult directly with people affected by dementia. This level of collaboration can take time and be resource intensive. It would have been easier simply to send everyone a hat, scarf, and gloves from an online retailer, but, if the products are unsuitable or not used, then we have wasted money and potentially frustrated someone already facing multiple challenges. Creating bespoke winter warmer packs for people takes time. The logistics of purchasing and storage for hundreds of items has been a challenge, for example simply storing items awaiting distribution. However, we know that when each person receives their pack, bespoke for them, whether it’s a soft scarf and neck warmer, thin gloves or insulated ones or bed socks in a colour they like, they will know that we have listened to them. Hopefully they will feel warmer too.
This article first appeared in the Journal of Dementia Care
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