Research and analysis

Extreme cold temperatures in domiciliary care: the study

Updated 31 July 2024

Background to the research

The third UK Climate Change Risk Assessment (CCRA3) published in 2020, stated that the burden of ill-health and mortality from cold weather and cold homes remains significant in the UK and is a priority for public health and local government action (1).  Whilst climate change is likely to reduce the level of cold-associated mortality overall, numbers are predicted to remain high until the end of the century, even in the context of gradually warming temperatures (2).

Mortality is significantly higher during the winter months (December to March) in the UK when compared to other seasons. On average there are around 35,000 excess winter deaths (EWDs) each year in England and Wales but the number tends to vary annually.

To be clear, the method used by the Office for National Statistics (ONS) to estimate the number of EWDs is a measure of all causes of mortality, including influenza, respiratory diseases, etc, as well as cold. The output of the Influenza Mortality Monitoring (FluMoMo) model that has been adapted by UKHSA to measure extreme cold-associated mortality, estimated that 5,533 deaths in winter 2022 to 2023 (December to March) could be attributed to periods of extreme cold (2).

Cold-associated ill-health and mortality is a complex issue involving many factors. However, there are a variety of health risks that can be brought on or exacerbated by cold weather. Epidemiological studies suggest that at the population level, the 65 years and over age band is when the risk of the effects of cold starts to increase (2). People with long-term health conditions (more common amongst people aged 65 years and over) such as cardiovascular or respiratory disease, or a mental health condition, can also be more at risk (2).

Although exposure to extreme cold can kill directly through hypothermia, the leading causes of cold-associated illness and death are respiratory and circulatory (lung and heart) conditions, dementia and Alzheimer’s. People with dementia and Alzheimer’s often do not recognise that they are feeling cold (2). We also know that cold-associated mortality represents a significant health inequality, with those experiencing greater deprivation more likely to be affected (2).

Registered providers of domiciliary care (personal care at home) travel between clients’ homes in all weathers, and work with clients in a wide range of risk profiles from cold weather. Domiciliary care workers are also exposed to weather and travel-related risks as they move between multiple settings during periods when a Cold Weather Alert has been issued by UKHSA and the population is advised against undertaking non-essential travel.

The aim of this study was to explore client and care worker risks and preparedness for cold weather, with a view to identifying mitigations and incorporating this into cold weather planning advice and planning.

Research team

Who conducted the interviews

UKHSA commissioned Discovery Research, an independent research agency, to conduct the study. Interviews were carried out by 4 qualitative researchers and the team was led by Hamish Kynoch, Head of Qualitative Research at Discovery Research.

Study design

Sampling and method of approach

Participants were primarily selected by a network of recruiters across the country. The recruiters use databases of members of the general public that they have built up over time and these databases are refreshed regularly. Databases are built up initially through a variety of means, including cold calling and referrals from people who have previously participated in research. Potential participants were initially identified and were sent an email invitation asking if they would like to take part. Following a positive response to this email, the recruiter then contacted the person to take them through a recruitment screener to ensure they fitted one of the profiles highlighted in the detailed sample breakdown. At the end of the screener, they were asked to give consent to their participation in the research. Written consent was captured using an online consent portal.

In recognition of the varying winter weather experienced across England, the researchers sought for a geographical spread of participants from across the country, including London, Birmingham, Leeds, Plymouth, Greater Manchester and Liverpool.

Sample size

Discovery Research conducted interviews with 29 social care practitioners providing domiciliary care, 5 adults receiving domiciliary care and 4 key stakeholder representatives in the domiciliary care sector between 31 July and 14 August 2023.

Description of domiciliary carer and manager sample

Two criteria were applied to ensure that the sample included professionals with a wide range of roles within domiciliary care. The first was the level of responsibility of the domiciliary social care practitioner. This included:

• 9 managers or owners
• 20 domiciliary carers

The second criterion was the type of clients the carer supported. These included:

• 9 Care Quality Commission (CQC)-registered for working with people with learning disability or disabilities
• 21 CQC-registered for working with older adults with needs including dementia, Parkinson’s and end-of-life care

Description of adults receiving domiciliary care sample

Five adults receiving in-home care for a range of health conditions were interviewed to ensure the perspectives of those receiving in-home care were heard. The interviews with adults receiving care were included as case studies and their experiences are not generalisable.

All were London-based and represented a mix of socio-economic groups, genders and ages. Each individual was receiving in-home care to support them with a health condition.

The sample included:

• one adult with motor neurone disease – she lives alone and uses a wheelchair; carers assist her with getting ready for the day and ready for bed and preparation of meals; her condition gets worse in cold temperatures so she avoids going out during winter because of this and has to keep her house warm

• one adult who has had a stroke – a carer provides daily support with household tasks like cooking and shopping and with personal care which she couldn’t do by herself; however, she lives with her husband and adult son so she also has their support

• one adult with autism, a mental health condition and a musculoskeletal disorder – his musculoskeletal disorder means he needs to go for regular check-ups and his condition feels worse in the cold which means more hospital appointments; these can be hard to get to when roads are icy

• one adult with a degenerative disc disease – she lives with her son and husband, and carers support her with personal care; doctors and nurses visit her to keep on top of her symptoms; she finds her ability to do things around the house varies day by day

• one adult with visual impairment and a neurological condition – he has 2 carers for daily support; he likes to go on walks and needs physical support from his carer when the road conditions are icy or snowy

Description of sector stakeholder sample

The researchers conducted interviews with the social care leads from 2 local authorities: one from an urban location in London and one from a rural location in the South West of England. They also conducted interviews covering 3 organisational perspectives:

• the National Care Forum
• the National Care Association
• the Care Provider Alliance

Interview guide and pre-task

This research was conducted during the summer of 2023, meaning participants were reflecting back over several months. A pre-task was therefore included to ensure experience of winter months was more top-of-mind during the interview. Domiciliary carers and managers or owners of domiciliary care organisations completed the pre-task by email before taking part in the interview, as did the clients receiving in-home care. The pre-task asked them to recall their experience of last winter as well as what preparations were made and what support was available. See the appendix for detail of the pre-task questions.

The pre-task was then followed up by 60-minute interviews, carried out remotely or with the option of an in-person interview provided for the adults receiving in-home care. All interviews were guided by a topic guide with a schedule of questions to structure the discussion across key themes. This was to ensure consistency and enable comparison across interviews.

The key themes covered:

• the experience of social care practitioners and those they care for during winter
• action plans or processes domiciliary care providers have for the cold weather
• how effectively information is disseminated to domiciliary care workers
• the reaction to ‘action card’ guidance for frontline workers provided by UKHSA (as of August 2023) to support the social care system during winter months

(Note: Since this research was conducted, these action cards have been updated and were published in October 2023.)

The researchers asked participants whether and how their experiences differed in periods of prolonged cold weather as opposed to periods of ‘cold snaps’ (shorter but colder weather). For context, the winter of 2022 to 2023 was marginally milder and drier than average. The first half of December 2022 was fine and settled but increasingly cold, and then milder weather continued until almost half-way through January 2023, after which temperatures dropped again. Most of February 2023 was mild, dry and settled. See the appendix for the specific wording given to participants in the interview to guide them to think about ‘prolonged cold’ versus ‘cold snaps’.

Recording and transcribing

All the interviews were either recorded via Microsoft Teams or, for the face-to-face sessions with adults receiving care, recorded using a digital recorder. The interviews were then transcribed. Participants were assured of anonymity at the start of the interview and subsequent transcripts were all anonymised, with participants’ names and any other identifying comments removed and replaced with ‘redacted’. One interview with an adult receiving care was not recorded as the interview was conducted by telephone.

Data analysis and reporting

A combination of inductive and deductive coding was applied to the interviews using the Framework Approach (3). During this process Excel grids were initially populated by reviewing notes taken during interviews and by listening back to recordings. Codes and themes were identified through this process and were tested through regular team discussions throughout the fieldwork period. Coding was initially applied by a single researcher and these codes were then confirmed and supplemented by the other researchers on the project. 

Caveats and limitations

This research was carried out during the summer months of 2023, several months after a cold weather event, which may have led to recall bias. Nevertheless, with the help of the pre-task to trigger memory, participants were able to provide a sufficiently accurate picture of their experiences to build a good understanding what winter is like for them and the people they care for.

When considering these findings, it is important to bear in mind what a qualitative approach provides. It explores the range of attitudes and opinions of participants in detail. Unlike quantitative research, it provides an insight into the contexts and the drivers underlying participants’ views. Findings are descriptive and illustrative, and not statistically representative (4).

Key findings

Risk perceptions of cold weather

The dangers of cold winters to clients were well known and most social care practitioners felt well prepared. In general, there was not a sense of increasing danger from winter weather. Rather, this was perceived as part of normal life in England. Therefore, social care practitioners felt confident that they knew what to look out for in terms of the physical health of their clients in winter. They were particularly conscious of respiratory illnesses such as colds, flus, and COVID-19. Ensuring clients are vaccinated against flu and COVID-19 was a priority for any winter season.

A domiciliary carer said:

Because of my own experience, I know exactly what to do when winter comes, my clients are also quite resilient.

There was evidence of good knowledge around the best behaviours to adopt when supporting clients, which came from a combination of knowledge passed down from the care organisation they were working for and personal experience of cold weather.

In order of priority, the main behaviours adopted by carers were reported to be:

1. Keeping the client, and their home, warm. This included:

• ensuring they wore layers
• making sure they moved about – there was a clear sense that adults who were less mobile were more at risk as they would not be able to get extra blankets, put the heating on and so on
• leaving clients a hot drink when leaving the property
• suggesting clients had more frequent, hot showers

2. Treating nearby surfaces with grit or salt. This was to prevent clients from falling over on icy or snowy surfaces which can also be something that clients themselves are most concerned about.

3. Keeping clients well fed, especially with hot meals. This involved cooking a meal at the client’s home or, on occasion, a carer would even prepare a meal at their own home and bring it to the client if they felt their client was not cooking sufficiently nutritious or warm meals themselves.

4. Ensuring clients were getting all the financial assistance for which they were eligible. This was a particular focus at the time of the research in 2023 due to the cost-of-living crisis and high energy prices. This included:

• ensuring clients were getting the fuel allowance if eligible
• working with Citizens Advice and debt management teams
• submitting grant applications to the local authority

5. Ensuring clients were getting all the supplies they need, especially during severe weather events, particularly sudden snow or ice. Clients often did not want to or were unable to leave their house to pick up groceries or medication, so this job was falling to the carers in these situations.

6. Checking household appliances in clients’ homes. The focus was around boilers and other heating systems, but making sure TVs were working was also a priority as they are used a lot by clients in the winter months.

Risk perceptions of cold weather from the perspective of adults receiving care

Adults receiving care who participated in this study mirrored many of the concerns that domiciliary carers reported. Concerns around about falling over were paramount, with some avoiding going outside at all if conditions were slippery and, if they did, needing extra support from their carer.

Other concerns centred around their heating systems and ensuring that their heating was functioning well at the beginning of winter.

An adult receiving care said:

My radiator didn’t work last winter … I made a complaint to the warden but nothing was done – so I felt last winter was colder. There were times when I went outside for a walk and went back in because it was too slippery.

Not surprisingly, they were also very concerned about catching illnesses and some complained that too many different carers were visiting them, increasing their risk of catching something. Some also complained about the hygiene practices of some of their carers, again prompting fears of picking up illnesses.

Adults receiving care also reported increased concern around cold weather exacerbating existing medical conditions:

The cold made my scoliosis worse, I felt very uncomfortable. It also affects my asthma so it becomes harder to breathe in the cold and with the heating turned up high it feels really stuffy, which also isn’t good.

They also reported being concerned about the cost of energy, their mental health during winter months and their ability to access supplies, both food and drink and medication, when cold conditions were particularly severe. This will be covered in more detail later in this report.

Planning and preparedness for cold weather

There was evidence of comprehensive winter planning, especially amongst most of the larger organisations.

Best practice included putting into place business continuity and contingency plans for particularly cold weather events at the beginning of autumn. At the same time, many of the larger organisations were conducting risk assessments for each client with red, amber, green (RAG) codes allocated depending on level of vulnerability identified. Individual care plans were subsequently drawn up and those identified to be most at risk allocated more visits during the winter months. However, it is worth noting that many of these actions were contractual obligations and in place not just for winter months. Further important elements of planning included updating winter policy documents and checking on stock levels at this time of year, for example, blankets, windscreen scrapers and winter clothing.

Local authorities also reported that they would set up network meetings at this time of year to cascade plans to providers and send out emails as well as providing information on their websites. This was often backed up by a communications campaign providing advice around keeping warm, and information about applying for grants and accessing equipment or supplies through the local authority.

Some of the larger care organisations were triggered into action before autumn: they reported starting to book in vaccinations for their clients in the summer. Some also started to apply for winter grants for their clients during the summer months.

It was the larger organisations who were more likely to apply RAG codes to clients and more formally tailor their care accordingly, whereas the smaller organisations, with fewer clients, had more informal means of deciding who needed more support during the winter. Nonetheless, carers and managers in these smaller organisations still had a very clear idea of what needs to be done differently in winter.

An owner of small domiciliary care organisation said:

We have nothing described as an action plan as such – but we are a small team who work closely with a small group of clients and feel well attuned to their needs. We do things to help prepare them for challenges related to more extreme weather – but it is more on a case-by-case basis.

An owner of large domiciliary care organisation said:

We will have a meeting with staff and provide them with equipment such as ice scrapers and appropriate warm clothing. Clients are assigned RAG codes depending on vulnerability. Those assigned red are the higher priority for more frequent visits.

In some cases, though there was not a specific cold weather plan, relevant actions around prioritising care for the most vulnerable were included in broader business continuity plans. These plans, however, were not specifically aimed at what to do during cold weather, so while being a good base for action, were not as targeted as they could be.

The impact of sudden, cold weather

Managing severe wintry conditions where there was not a coordinated community response was a strong concern, especially in more rural areas. The biggest issue identified by carers, managers and sector organisations was ensuring that carers were able to travel safely and efficiently to clients’ homes. Often their cars were unsuitable for driving in snowy or icy conditions and carers themselves were concerned for their own safety when travelling. These issues were compounded by the fact there were often more staff absences when the weather was particularly severe. Moreover, it was hard for friends and relatives to get to clients’ houses in severe wintry conditions, meaning it could be a challenge for clients to be seen by anyone during these times. Clients themselves were also unable or afraid to leave the house in these conditions and so may run short of some supplies. If they did go out, they were at risk of slipping or falling.

The most effective responses involved an emergency process being implemented when severe wintry conditions occurred. Primarily this involved ensuring that all clients could be seen during these conditions. An agency would establish if a carer could still reach the client and if they could not, then care would be rescheduled or an alternative carer identified. The alternative carer would typically be much closer to the client so that travel time would be reduced or, ideally, they would be within walking distance removing the need for a vehicle completely. This initiative was being supported by one of the local authorities interviewed, who were promoting ‘local carers for local clients’ as part of their ‘green plan’. The ‘green plan’ was an initiative in this particular local authority that was a broader environmental plan to reduce the number of journeys by vehicle and the duration of those journeys. Schedules of visits were also switched around to allow for this reallocation of carers and that change in schedule communicated to clients as soon as possible. Extra visits for the most vulnerable clients were also arranged during particularly severe wintry conditions.

In a few instances, typically with the larger care organisations, appropriate vehicles were made available for carers. This ranged from providing pool vehicles that were able to cope with the conditions to hiring trucks to get carers through the conditions and to their clients.

But activating wider community support appeared to be the most important element of any response. This involved communication with fellow care organisations, local authorities and other community organisations, often by broadcasting their need via social media. Local authorities reported that they typically took the lead in this type of response, acting as a hub for care organisations to report difficulties in reaching certain clients and the local authority then liaising with another care organisation who might be able to help out.

A local authority social care lead said:

We have coordinated huddles where care companies had opportunity to come together, identify who had problems and where, and then who could step in to help. Relationship building and open communications is really important.

A domiciliary carer said:

My company has something called ‘snow patrol’ which involves prioritising clients who need medication/care, some need 3 or 4 visits a day.

While there were some best practice examples of coordinated community response, specific challenges to achieving this included:

• a lack of knowledge as to who the back-up or support could be in these situations; domiciliary carers often did not know that the local authority is there for support in these circumstances
• contingency plans being put in place often meant a change in schedule for clients which some clients found difficult
• care organisations were unsure if and how data about clients could be shared with other organisations if there is a coordinated response

An owner of a domiciliary care organisation said:

We need clarity around data sharing. In the extreme cold event, this happened in my area – companies shared data as they saw fit, in order to meet the needs of clients – but I felt there was a lack of clarity or protection around what they were actually ‘allowed’ to be doing.

The impact of severe wintry conditions from the perspective of the adults receiving care

The adults receiving care who participated in this study reported that there was little they could do to prepare for severe wintry weather other than trying to ensure they had enough supplies. Typically, they would watch the news with their carer to see what weather was expected and then stock up accordingly, with some resorting to online orders to avoid having to go out in the expected cold weather.

But some more severe impacts were also reported. One woman receiving care explained how her lock froze, meaning her carer was unable to access her property, leaving her in bed for 14 hours. Other instances reported often focused on transportation issues in snowy or icy conditions. One of the adults reported that taxis were not able to access his flat as it was on a hill that was iced over, meaning he had to struggle down the hill himself so he could reach the taxi.

The impact of increased energy costs

The high cost of energy during the winter of 2023 meant that some clients were prioritising their finances over their wellbeing, while others prioritised warmth and wellbeing meaning they were putting themselves at risk of financial hardship. Domiciliary carers reported that many clients were turning their heating down or off because they were concerned at how much money they might be spending. This concern was fuelled by intense media coverage around the issue at the time, which led even those who could comfortably have the heating on to turn it down or off.

A domiciliary carer said:

Some of my clients are reluctant to switch the heating and will do anything else, to avoid doing this, for example putting on blankets, warm drinks, warm meals.

A domiciliary carer said:

Some of my clients were visiting warm hubs during the day so that they can get out of the house and use less of their own heating.

In these instances, domiciliary carers often felt obligated to take action. This sometimes involved just reassuring clients around their energy costs and explaining they could afford their heating. But on occasions, carers were also pointing clients towards available financial support and some felt the need to escalate the situation to the local council or charity for a financial assessment of their client which they hoped would result in a grant or other financial support.

Domiciliary carers felt conflicted about how much action they should take to protect their clients when doing this meant going against the client’s wishes. Many carers felt they needed to take more urgent action and were often surreptitiously turning the heating back up if the client had turned it down or off. This put carers in a difficult position and they wanted clear guidance around whether they should intervene in these situations.

Domiciliary carers reported a minority of clients leaving the heating on all the time to keep their house warm. This resulted in some carers being concerned that clients might end up being cut off for not being able to pay their bills. Some carers reported turning the heating off to save their client’s money, which once again put them in a difficult ethical position.

Energy costs from the perspective of adults receiving in-home care

Adults receiving care reported that the ‘energy crisis’ in the winter of 2022 to 2023 was very top-of-mind for them. Their concerns covered 3 areas.

Firstly, adults receiving care reported that they were doing a lot of things to conserve energy in the house. As well as limiting how often they put the heating on, as reported by the carers, they also kept curtains closed and ensured lights were turned off that were on unnecessarily.

Secondly, some adults receiving care also reported their concerns around how much energy their carers were using, with some complaining about them filling kettles up too much or charging their mobile phones unnecessarily. They felt that care organisations should be giving stronger guidance to their carers around how to behave in the houses of those they are caring for in relation to electricity usage.

Finally, those adults receiving care who participated in the study reported that they were not happy about the level of funding available to them during winter months and felt they had imperfect knowledge as to what funding was available to them. But fundamentally, they would like more funding.

An adult receiving care said:

I heard something about if there are 7 days consecutively under zero degrees you get £20 funding, but I think this should be cut down to like 2 to 3 days instead.

Wellbeing and vulnerability

The mental health of clients over the winter months was a concern for social care practitioners and for clients themselves with many feeling isolated, particularly during prolonged periods of cold. A combination of shorter days and periods of prolonged cold weather meant that clients were often not leaving the house for long periods, resulting in a sense of isolation. Curtains and blinds were sometimes kept shut to keep the heat in meaning that clients saw very little daylight during the winter, another contributor to poor mental health. Prolonged periods of cold weather often resulted in fewer visits by friends and family as well, and there were generally fewer people out and about in the local community.

This all added to the sense of isolation. And while some clients did not want to leave their houses, many did, and found it hard to understand when they were restricted from doing so by their carers. Better risk assessments would enable those who want to go out, to do so.

A domiciliary carer said:

A lot of my clients have mobility issues and are bed bound … so they may not be able to get out as they normally would; mobility scooters and icy roads are not a good combination, so their level of pleasure in life may go down.

An adult receiving care said:

Physically and mentally I wasn’t in a good place last winter. I felt my wings had been clipped and I felt isolated.

Some adults receiving care reported how important the television was in situations where they were unable to go outside as well as video-calling to alleviate the sense of isolation they feel. On occasions, some adults receiving care also reported that their carers kept them entertained by playing board games with them.

Some domiciliary carers felt it is only due to the extra effort and time they put in over the winter that clients could receive the care they required, but this took its toll on the carers themselves. Domiciliary carers expressed a personal and professional duty of care to their clients and often made the extra effort to reach clients during severe winter weather. They sometimes went above and beyond their responsibilities by staying with clients for extra hours or even by bringing them homecooked meals or personally sourced additional heaters.

Yet some felt that the conditions they had to work in were not adequately acknowledged by management. Carers were particularly worried about their risk of injury, due to increased risk of road traffic accidents or falling in icy conditions. They also felt that their efforts were undervalued as they were not paid for their travel time or the extra hours many of them put in over the winter months.

Carers also do not feel they always get the additional support that is necessary during severe winter weather, for example, being provided with 4 by 4 pool cars or contact numbers for support. Good feedback loops between domiciliary carers and management were not always evident either, leaving carers feeling they have been abandoned on occasions.

A domiciliary carer said:

I slipped on ice and hurt my face when I was coming out of a client’s home. I told management and they gave me one-week sick leave but they didn’t do anything other than that…no risk assessment. I’m quite worried because I hate driving in snow and icy conditions. Driving in town is easier because roads are grittier but it’s harder as you go more rural, I get increased anxiety from it.

Information needs

Coordination and communication needs

Communication between management and domiciliary carers was mixed. While initial information around preparedness was typically being cascaded effectively, ongoing communication throughout the winter was sometimes inconsistent, leaving some domiciliary carers feeling unsupported.

It was commonplace for domiciliary care organisations to have a meeting at the beginning of winter to talk about their winter plans and to ensure domiciliary carers were aware of the best practices to follow.

Ongoing communication, once winter had begun, was primarily digital. WhatsApp groups were often the primary source of sharing information between carer teams, but company portals or apps were also very commonplace, especially within larger organisations. Emails and company newsletters supplemented these 2 modes of communication but were not engaged with as much as the other channels as they were a little harder to access and the emails harder to read on mobile devices.

Larger organisations were more likely to be capable of implementing non-digital communication on a more ongoing basis over winter. This included monthly and sometimes weekly meetings, phone calls direct to the carer or the client and having noticeboards with information about winter plans in their central hub that carers could access. Having multiple channels to disseminate information was an advantage for some of the larger agencies, especially those that were able to implement regular, face-to-face meetings.

A domiciliary carer said:

I have quite a lot of communication with the management. My agency has field managers and they do regular spot checks and are on hand for any questions. We also have weekly meetings where staff can voice out any issues.

Informing carers about what supplies are available to them (for example, heaters, emergency lighting, batteries and so on) was also reported as important for care organisations to pass on. A list of emergency contacts was also supplied by some (but not all) care organisations, and this included contacts for local authorities, GPs and other healthcare organisations, utility companies and places where clients can get financial support.

Some larger care organisations also signposted carers towards their company policies to ensure carers were up to date with winter policies. In some instances, care organisations highlighted ‘policies of the month.’ In the winter this would be the cold weather policy, to remind carers of specific actions expected at this time.

However, although there were examples of good two-way communication between carer and management in larger organisations, on occasion, information could feel one-way in care companies of this size. This was especially the case where the information was primarily passed on through a portal rather than face to face meetings.

A domiciliary carer said:

Communication is very one-way. I receive work through an app and a monthly newsletter but I often don’t read it as the information isn’t relevant to me. There are very few opportunities to feedback about working conditions (bar an all staff meeting every 6 months). I just don’t feel supported and I don’t feel like management understand what it is like working on the frontline during winter especially.

In contrast, it was more typical for smaller organisations to have more consistent ongoing two-way channels of communication.

Administrative needs

Carers had some gaps in knowledge around what financial support was available for clients, contact numbers for emergency support and advice around what to do if clients insist on turning their heating off.

Most prominent was a lack of understanding of where clients could access information about or apply for financial support. In particular, there was some lack of awareness of the availability of additional grants from local authorities and some were not clear on how clients could claim the winter fuel allowance.

Some carers also felt they did not have a comprehensive list of contact numbers in case of emergencies, for example, contacts for utility companies, contacts in case heating stops working, local authority contact numbers and so on. This is something they feel their managers should be providing.

They were also looking for some guidance around what to do if clients did not take their advice, and this led them to be in danger – for example, if a client insisted on keeping their heating off, or on going outside when the surfaces were slippery.

Guidance needs

Social care practitioners were confident in their knowledge of what to do in the extreme cold weather and how to appropriately support those that they care for, but they would still welcome the reassurance of formalised guidance.

Much of their knowledge of what to do was implicit, based on their own life experience. That said, some were accessing social media, local Facebook groups, TV news, local authorities, charities (for example, Age UK) and the CQC to supplement their knowledge when particularly cold weather hit as a reminder of what to do. And while some received this information during the monthly or weekly meetings, a formalised check list of good behaviours that is written down so they can be sure they have not forgotten anything would still provide helpful reassurance.

Some also reported that they receive the cold weather alerts from their managers and this can act as a good prompt to be more aware of the situation. They may pass this information on to clients in case they want to go shopping and stock up or simply to ensure they are wearing the appropriate clothing, but participants did not report that the alerts provided any particular advice.

A manager of a domiciliary care organisation said:

We do get cold weather alerts and send them out to the team – the alerts don’t tell her anything new or give her any advice but they are a nice prompt and reminder.

The action cards (tested as of August 2023) were felt to be useful in that they address the issue of having a more standardised and official place for knowledge around what to do over the winter months. They provide something more formal and consistent that everyone can refer to, regardless of their experience of domiciliary care environments during the winter. Domiciliary carers appreciate the various alert levels, with some comparing them to the RAG codes they use for their clients in winter.

However, awareness of them is limited and even one of the social care leads at a local authority had not seen the action card aimed at commissioners and local authorities.

In general, while the title of the action cards made it very clear who they were aimed at, all participants reported that it wasn’t always clear whether the specific, suggested actions contained within the action cards were for domiciliary carers, managers and owners or local authorities. The front-line domiciliary carers reported that the action card supposedly designed for them, did not contain appropriate actions for them considering the remit of their role. Many felt that it was more aimed at local authorities or managers and owners of social care organisations as it referenced working with partner agencies a lot and engaging with the local voluntary community.

For domiciliary carers, in particular, the action card aimed at them lacked some more practical advice. While partner agencies are mentioned on many occasions, the action card does not specify who these partner agencies might be nor provide contact information for them.

The language and format was also felt to be difficult to digest. Some domiciliary carers felt the language was vague and hard for carers to understand, for example “Work with partner agencies to ensure that cold weather planning features within wider winter resilience planning”.

Many reported that the document contained too much text and was too long overall, including managers and owners who noted that they would have to reformat the document or create a whole new document before sharing with their staff.

Domiciliary carers also felt that the action cards lacked any guidance about what carers themselves can do to stay safe during winter.

The social care leads at local authorities reported back in a more positive way about the action cards aimed at commissioners and local authorities. It gave them an important point of reference for winter months and they also liked the different alert levels.

A local authority social care lead said;

I really like these. I’d like to have them available to me now! They are broad and cover actions at multiple levels, which is important from a power sharing point of view.

I like the fact it is multi agency and especially the NHS logo at top, I feel this would hold most weight with my health colleagues.

But, similar to the feedback from social care practitioners, some felt that the action cards are targeted at too broad an audience and social care leads wanted more clarity as to who each action is for.

A local authority social care lead said:

It would be useful to distinguish more between work areas, for example, it mentions homelessness but this is under housing, not health and social care. It needs to be clearer who the actions are for, more tailored.

It could be clearer about which actions are core actions for everyone and which are more at a strategic level.

Local authority participants also felt that the action cards could provide more specific examples of organisations to involve in a community response to cold weather.

A local authority social care lead said:

If it is for coordination, it needs to be clear and more practical about coordinating functions – more about having oversight and responding to specific challenges, for example, if transport is a problem, who is going to carry out the liaison work, like calling around family members?

A local authority social care lead said:

There is the practical element missing. For example, where it says signpost, signpost to who?

Conclusions

This qualitative study looked to explore a specific area of social care that is particularly vulnerable during the winter months – domiciliary care. The research provides a view on how much domiciliary carers, and their managers and owners, know about what to do during the winter. It also explores the degree to which they are preparing for this time of year as well as understanding where the gaps in knowledge are and what situations cause the most risk to clients and carers themselves. Finally, the research considered the impact and utility of targeted action cards produced by UKHSA under the old Cold Weather Plan, that provided guidance to various audiences involved in delivering domiciliary care: frontline domiciliary carers, owners of domiciliary care agencies, local authorities and other commissioners (these documents have since been superseded by the Adverse Weather and Health Plan (AWHP) and updated supporting documents). The research revealed some key actions that would improve the situation for people in domiciliary care and domiciliary carers themselves during the winter months.

There was a positive response to the action cards as they provide a standardised point of reference, but carers reported that there was a lack of practical information to help them know how best to care for both themselves and clients during winter. Action cards for domiciliary carers should have clear advice against each alert level and should be delivered alongside supporting tools such as risk assessment proformas and checklists of what they should be looking out for as well as more specifics on partner organisations; who are they for each region, and contact numbers. Action cards for wider coordination efforts need to be clearer and more practical about coordinating functions – more about having oversight and responding to specific challenges, for example, if transport is a problem, who is going to carry out liaison work?

Care organisations generally seem to be preparing well for winter, but it’s when severe wintry weather hits, and a coordinated community response is not in place, when most issues arise. Primarily this is about carers not being able reach clients but it is also about ensuring that people receiving care have all the supplies they need, especially those in more rural areas.

The findings indicate there are some key areas that would help in particular:

• facilitating communication within communities by providing key contacts of local authorities, local charities, community hubs and contacts other care organisations

• providing a specific ‘emergency response’ plan for unexpected, severe wintry weather and within this, provide clearer guidance here on best practice and how to ensure this coordination works

• helping to push the ‘local carers for local clients’ agenda that some local authorities are pursuing

The mental health of clients is another key challenge for the care sector during winter: the shorter days and cold weather means that clients often struggle over winter months. Many can feel trapped in their homes and have a strong sense of isolation. The feedback suggests that guidance would be helpful around how to provide better risk assessments to enable clients who want to get out more, to do so.

Cost of energy was a particular concern for many clients during the winter of 2022 to 2023 with many turning their heating down or off, and, conversely, some leaving their heating on permanently risking financial hardship. Providing carers with the tools to help clients make good decisions about the affordability of their fuel, for example, through online cost calculators, would help. More generally, some carers are looking for more guidance around the available financial support for clients and how to apply for it.

The health and wellbeing of the carers themselves during the winter is a further challenge that was not being addressed at the time of the research. Carers are currently going above and beyond their duties to ensure that the same level of care is being delivered over winter than at other times of year, with little sense that this is being acknowledged or fairly remunerated. Carers also feel vulnerable themselves at this time of year, and again, they do not feel they are always supported as much as they should be.

Ongoing work and next steps

For the financial year 2023 to 2024, UKHSA have introduced new checklists for those working in management roles including in the social care sector, to summarise key actions by cold-health alert level. These will be developed iteratively over the coming years. Future work under the AWHP will consider approaches to developing guidance for those in frontline caring roles.

The feedback from this research on the action cards has already begun to be implemented in the revised action cards. Changes to cold weather and health guidance introduced since the research for this report was completed have begun to address some of the limitations identified above. For example, a new guidance document and revised action card for those working in management roles in the social care sector both disaggregate recommendations according to the setting in which readers work – including for domiciliary care. Future work under the AWHP will consider what supporting tools are most useful to support translation of guidance into action on the ground.

Updated guidance and action cards for cold weather issued in September 2023 have helped to address the issue around carers not always being aware of the financial help available to their clients. Action cards now include signposting to sources of support for those in financial difficulty, to help meet energy costs, as well as advice on how to access support over the longer term for home adaptations to help improve energy efficiency. This signposting advice is included in general population guidance, as well as in guidance and action cards for professionals.

Refer to the cold weather and health guidance (part of the AWHP) to see the updates referenced above.

This research has identified some themes which may benefit from further exploration. While the sector largely had adequate processes in place to support clients through cold weather, in some cases individual carers were going above and beyond, incurring personal expenses, to meet the needs of the adults they care for. In periods of extreme cold weather, carers were still expected to visit clients’ homes, albeit it was typical for schedules to be rearranged to visit clients who lived closer; thus, carers were exposed to dangerous conditions while driving. Suitable vehicles were not consistently being provided. The impact on carers and suitable mitigations could be further explored. Relatedly, given the importance of the role that local authorities play in coordinating care for clients in their local area, particularly during periods of extreme cold weather, it would be helpful to explore how this can best be promoted.

References

1. Sayers PB and others. ‘Third UK Climate Change Risk Assessment (CCRA3) future flood risk: final report prepared for the Committee on Climate Change’ 2020

2. UKHSA. ‘Adverse Weather and Health Plan: Supporting Evidence 2024

3. Gale NK, Heath G, Cameron E, Rashid S and Redwood S. ‘Using the framework method for the analysis of qualitative data in multi-disciplinary health research’. BMC medical research methodology 2013: volume 13, issue 1, pages 1 to 8

4. Tenny S, Brannan JM, Brannan GD. ‘Qualitative Study’. StatPearls (updated 18 September 2022)

Appendix

Pre-task questions for domiciliary carers and managers/owners of domiciliary care organisations:

1. What do you remember about the cold weather last winter?

2. How were the people you were caring for during the cold weather? How were they feeling, physically and mentally? Were you more concerned for the health of the people you were caring for at this time? In what way?

3. What, if anything, did you do to help the people you were caring for?

4. Did you, or the organisation you work for do anything to prepare in the run up to the cold weather, if you had heard about it before hand?

5. Was there any particular action plan in their organisation that was put into action? If so, what did this consist of?

6. Were you aware of any advice? If so, what was this?

7. What did you want to find out?

8. What support were you aware of, if any?

9. If you did not feel more concern for the people you care for, why was this? What reassured you? Was it something you read or saw? The actions of other people? What was being said in the media? Any other advice?

Pre-task questions for clients receiving care:

1. What do you remember about the weather last winter?

2. How did the cold weather make you feel, physically and mentally?

3. Was this different during periods of extreme cold specifically (in December, late January and early March)?

4. Were you aware of any advice? If so, what was this?

5. What did you want to find out?

6. What support were you aware of, if any?

7. Did you feel at risk at all? Why? Why not?

8. How did you feel about the support you received from your carer/carers?

9. Before the onset of extreme cold, did you and your carer/carers discuss any specific plans related to the cold weather with you?

10. If you did not feel more concern for the people you care for, why was this? What reassured you? Was it something you read or saw? The actions of other people? What was being said in the media? Any other advice?