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Commenting on the new interim advice from the JCVI, Helen Walker, Chief Executive of Carers UK said:

“Yet again we are raising the fact that millions of unpaid carers looking after disabled, older or ill relatives and friends are being left out of announcements about the vaccination programme even though they do the same job as frontline health and care staff but care unpaid. The vaccination programme, when it included unpaid carers, recognised the hugely important role they provide which cannot easily be replaced should they become ill by overstretched health and care services. The first vaccination and booster programmes also understood the fact that vaccinating carers reduced the risk to the person being cared for.

By not recognising carers, we are not only de-valuing their role, we are potentially building up unnecessary risk across health and care services, as well as to vulnerable individuals.  The pandemic does not feel like it is over for many unpaid carers who are still worried about the risk to the person they care for.  

We sincerely hope that the final iteration of the guidance about boosters from the JCVI will include unpaid carers as they did last autumn 2021, making them a priority, recognising their valuable role.”

 “We are deeply worried by these latest findings. Unpaid carers are at breaking point, exhausted after more than two years of caring with little or no outside support. The impact on a social care system that was already on the brink of collapse before the pandemic means even more pressure on even more families who are propping up a chronic shortage of services.

“With hundreds of thousands of people now waiting for an assessment or service, sustainable funding for social care is essential, without which many thousands of carers and families will simply be unable to cope much longer. Together with the impact of the cost of living crisis, we’ll see the unacceptable inequalities that unpaid carers and their families already face, widen.”

 

“That the promised Employment Bill has been excluded from the Government’s commitments for the next year is a severe blow for unpaid carers. It’s a huge missed opportunity.

“The Government had been very keen to stress the introduction of a right to Carer’s Leave as support for unpaid carers, as an important part of its delivery of social care reform, hospital discharge and staying in work; – essential, given the pressures on families as the cost of living crisis deepens.  It feels like Government is backtracking on their manifesto promises to carers.

“This is such a missed opportunity to value carers and to ensure that they had the support to continue to juggle work and care.  Employers from Carers UK’s employer led forum, Employers for Carers, have found positive business benefits from introducing Carer’s Leave. 

“With severe social care shortages and pressures on the NHS, families simply can’t do it all. Many are at breaking point. This is precisely the time when Government really should be investing in carers and their families as well as employers by bringing in the right to up to one week’s unpaid Carer’s Leave and a day one right to request flexible working.”

Responding to recent press speculation that an Employment Bill would not be forthcoming in the Queen’s Speech, Carers UK has urged the Government to make a right to Carer’s Leave and day one rights to request flexible working a priority and to fulfil their manifesto commitments. 

Helen Walker, Chief Executive, Carers UK, said: “It would be shocking and incredibly disappointing for carers if we did not see a commitment to legislate for both a day one right to request flexible working and for up to one week’s unpaid Carer’s Leave which both support unpaid carers. In November 2021, our research[i] found that 56% of carers said they needed unpaid Carer’s Leave and that a further 1 in 7 workers who were carers were at risk of reducing working hours or giving up work altogether if they didn’t get it.

“Government has been very keen to stress the introduction of a right to Carer’s Leave as support for unpaid carers in the delivery of social care reform, hospital discharge and staying in work; – vital, given current income pressures on families with the cost of living rises.  It would be devastating if that support for unpaid carers ebbed away.  We need Government to make every effort to deliver on their manifesto promises to carers.

“A day one right to request flexible working is just as important. Carers UK’s research shows there are still many unpaid carers out there who are at risk of losing their jobs if they don’t get more flexibility in the workplace. 

“With social care shortages and pressures on the NHS, families simply can’t do it all. This is precisely the time when Government really should be investing in carers and their families as well as employers by bringing in the right to up to one week’s unpaid Carer’s Leave and a day one right to request flexible working. There has never been a more important time to do so.

“The Government's consultation on Carer's Leave found support across business and carers alike."

 

[i]Findings in our report Supporting Carers at work: Opportunity and imperative, published in November 2021

As the Health and Care Bill receives Royal Assent and passes into law, Carers UK has welcomed the new rights to involve carers and people who use services which run throughout the legislation.  The Act will place new duties on NHSE&I and the new Integrated Care Boards to involve carers strategically through public engagement. It also introduces new provisions requiring involvement with carers, where appropriate, in relation to any services for the prevention, diagnosis, care and treatment of the person they care for.  The new law contains key responsibilities for NHS Trusts to involve carers, including young carers, and patients during the process of hospital discharge – which is essential.

Helen Walker, Chief Executive, Carers UK said:

“Every time we engage with unpaid carers, we can see how good involvement makes a real difference. They are the experts who can help shape services and support, and they provide the bulk of care in the community. On an individual level, being involved and then being given the right information and advice to care, makes a huge difference.  Carers say it enables them to provide better care, improves their health and wellbeing as well as that of the person they are caring for. We are pleased that Government has listened and that these new rights are now becoming a reality.  

“We look forward to working with Government, NHS England and Improvement, and the new Integrated Care Boards and Partnerships to make sure that this works best for everyone, including carers.  With the NHS and social care facing unprecedented demand, supporting carers better and giving them the right information and advice can help to prevent other issues further down the line.

“During the passage of the Bill, the Government also promised to involve carers more in its review of the NHS Constitution which has also been welcomed by Carers UK.

“Whilst the new rights for carers are positive, Carers UK believes that the system needs adequate resourcing to follow through.  Carers, including young carers, need support to work or study properly at school, and to maintain their health and wellbeing.”

In the first national event of its kind, hundreds of unpaid carers from around the UK will join Carers UK’s Healthathon on Saturday 30 April, for activities designed to boost their health and wellbeing.

The Healthathon marks the culmination of Carers UK’s Carers Active April campaign. The all-day event with five and half hours of free, wide-ranging and inclusive sessions via Zoom, will allow carers to join in at different times from their own homes.

According to Carers UK’s research[i], carers’ wellbeing can be negatively affected by caring and they are significantly less likely to be physically active, impacting their physical and mental health.  Three-quarters of carers said they were less able to do as much physical exercise as they would like, but that being physically active made them feel good about themselves.

The day will be kicked off with a warm-up by the legendary Mr Motivator, known for his upbeat energy and engaging approach to encouraging anyone wanting to get more active at home.

Mr Motivator said:

“I’m delighted to be a part of the Healthathon event which will cap off a really important Carers Active April campaign month. It’s vital that we raise awareness and support carers to be as active as possible so that their physical and mental health and wellbeing is improved. I look forward to getting everyone moving and in the mood for the different physical activity and wellbeing sessions during the Healthathon!”

The day will offer a wide range of physical activity and wellbeing sessions for carers to try, a chance to meet others and to gain hints and tips from professionals and experts.  Sessions include a strength and balance work-out, Tai Chi movements for wellbeing, tips for healthy eating on a budget, online tea and chat, a Bollywood dance session, relaxing yoga, and a physical activity goal setting and motivation session, which will include the chance to hear from a carer who will talk about how physical activity has improved her wellbeing.

Helen Walker, Chief Executive of Carers UK said:

“We’re delighted to be running the Healthathon as an enjoyable way for more unpaid carers to find some activities that they can take part in, that boost their wellbeing, help connect with other carers and that they can fit around their caring responsibilities.

“Unpaid carers have had an extremely challenging time during the pandemic, and many have seen their own health and wellbeing significantly impacted by their responsibilities. Caring for someone who is older, disabled or seriously ill can make it very difficult for carers to prioritise their own health and wellbeing on a day-to-day basis, but it is so important.”

Hayley has been caring for her husband for three years, after he experienced a spinal injury. She discovered how physical activity could help her mental health earlier in the COVID pandemic when she felt overloaded and had to take time off work. She said:

“I now go to a local gym class each week with a friend. I also signed up for a 5k. The exercise makes me feel fitter, generates natural endorphins and makes me feel happier.”

Carers Active April is a month-long campaign as part of Carers Active, run by Carers UK and funded by Sport England through the National Lottery. The month has shone a light on the importance of providing access and opportunity for unpaid carers to be physically active in a way that works for them.

For online activities, tips and motivation from other carers sharing their own stories to getting more active at any time, carers and their families can visit Carers UK’s Carer's Active Hub  to find out more.

 

[i] About the research: This was a mixed methods research project which included a quantitative phase consisting of analysis of over 2000 responses to the State of Caring 2019 survey as well as a qualitative phase including focus groups and interviews with 37 participants. This was followed by a pilot project, testing the ideas from the research with 27 participants.

Over 930,000 unpaid carers will see a real terms cut in benefits - Carers UK response to benefits upratings1

On Monday 11 April 2022, state benefits are being uprated to the new 2022/23 levels but are leaving unpaid carers’ benefits far behind the rate of living costs, meaning a real terms cut in income.

Carers receiving the main carers’ benefit, Carer’s Allowance, will be getting an increase of just £2.10 per week, based on inflation rates of only 3.1% set last year when the real rate of inflation could now be as high as nearly 8% in April. This represents a real terms cut in benefits as inflation outstrips the levels of uprating.

Carer’s Allowance will rise from £67.60 a week to £69.70, whilst the earnings limit for those claiming the benefit will rise from £128 to £132 a week. As the National Living Wage (NLW) has also increased, it means that anyone employed on the NLW will see a real terms cut in the number of hours they are able to work and still keep their Carer’s Allowance. This will fall from a maximum 14.36 hours of work per week to only 13.89 hours a week to stay within the limit.  If a carer goes over the earnings limit, they lose 100% of their Carer’s Allowance, a harsh penalty to pay.

For people caring for a severely disabled person for more than 35 hours a week, the carer element of Universal Credit will rise to £168.81 a month.

Carer’s Allowance is the lowest benefit of its kind and 35 hours of care need to be provided to a person with significant needs receiving the right level of disability benefits. 

Helen Walker, Chief Executive of Carers UK, said:

“As the cost of living crisis piles on the stress and pressure to household finances across the UK, the below inflation increases to Carer’s Allowance and Universal Credit are yet another blow for hard pressed carers.  

“Many carers have a reduced capacity to work because of their caring responsibilities or have had to give up work altogether. Despite the majority of carers having taken on more care during the pandemic, which has protected our health and care systems, they face a real terms cut in the level of financial support they receive. Carers do not deserve more hardship when they have done so much.

“Caring for someone can mean extra costs like having to use more electricity for special equipment, more heating to keep someone frail or unwell warm, and needing to spend more on special food. According to Carers UK’s recent research, Under Pressure, a quarter of carers receiving carer benefits were already using a foodbank.2 Today’s real-term cuts mean that many more will face challenging decisions about whether they heat their home or feed themselves. 

“Once again the UK Government has failed to increase the Earnings Limit for Carer’s Allowance in line with rises in the National Living Wage meaning carers can now work just 13 hours a week and retain their entitlement to Carer’s Allowance. This is completely counter to the UK Government’s objective to make work pay. What we need urgently is a system that legislates for a year-on-year rise, in line with at least 16 hours at the National Living Wage along with significant increases to carers’ benefits.”

Carers UK today welcomed an amendment to the Health and Care Bill which was passed in the Commons having been brought forward by the Government. This places a new duty on NHS hospital trusts in England to ensure that unpaid carers are involved as soon as feasible when plans for the patient’s discharge are being made. The amendment covers all carers of adults needing care and support following hospital discharge, including health care support. This means that young carers looking after adults would also be covered.

Earlier this month, a cross-party group of Peers in the House of Lords won an historic amendment which would have made sure that carers’ rights were retained and enhanced at the point of discharge, which would otherwise have been lost as key legislation was being repealed. 

Commenting on the Government’s next steps for living with COVID-19, including eligibility for access to free COVID testing, as set out    in a written ministerial statement by the Secretary of State for Health and Social Care, Helen Walker, Chief Executive of Carers UK said:

“Carers UK is deeply disappointed that tests will not be made free of charge to unpaid carers whether they are symptomatic or not. 

“Having borne the brunt of the pandemic and gone to extraordinary lengths to protect their relatives, unpaid carers are now being asked to pay in order to protect those they care for who are at risk of COVID.  This is a short-sighted move, that will make little sense to unpaid carers.

“Carers on low incomes, who are already facing spiralling bills they cannot meet, will not be in a position to pay for tests to know whether they have COVID-19 or not. Carers will be asking themselves who will provide the alternative care and who will pay for it if they think they have COVID-19? Can it be provided at very short notice? With social care stretched further than it’s ever been this is unlikely.

“For families who have been providing unpaid care, they face either hugely increased costs of caring or heightened anxiety and it will deepen health inequalities.  This decision shows a lack of respect and understanding of what unpaid carers have done during the pandemic and continue to do.

“Carers UK raised this issue many times with the Government, with the UKHSA and with Parliamentarians and is now asking the Government to reconsider for unpaid carers.”

A brand new campaign from Carers UK to help unpaid carers become more physically active in engaging and accessible ways will kick off shortly. Carers Active April will help unpaid carers all over the UK who want to move more but find it challenging due to the demands of their roles.

Those caring for a partner, relative or friend who is disabled, frail or unwell are being called on to sign up or spread the word on what promises to be an inclusive and exciting four weeks.

Three quarters of carers (76%) are not able to do as much physical exercise as they’d like to due to the stress and demands of caring for a relative or friend. At the same time 73% say that being physically active makes them feel good about themselves.[i] Carers Active April aims to change this so more carers can more easily access activity and feel the benefits of it.

On joining, carers will receive: A free starter pack including free resources, access to online sessions, and weekly emails with helpful ideas, top tips and links to more support. The four weeks of activity will culminate in a ‘Healthathon’ [ii]on Saturday 30 April, a fun, free online event which will offer exclusive sessions to join throughout the day as well as special guests. The first 500 carers to sign up to Carers Active April will receive a special Healthathon pack.

Funded by Sport England through the National Lottery and run by Carers UK as part of the ongoing Carers Active campaign, the month will offer unpaid carers opportunities to give new activities a go.

Carers and their families as well as organisations can visit Carers UK’s Carers Active Hub and read about the experiences of others and their journeys to becoming more active. Carers and organisations can share their own experiences and find inspiration in others as well as share what they have planned using the campaign hashtag #CarersActiveApril.

Hayley has been caring for her husband for three years, after he suffered a spinal injury. She discovered how physical exercise could help her mental health earlier in the COVID pandemic when she felt overloaded and had to take time off work. She said:

“I now go to a local gym to a class each week with a friend. I also signed up for a 5k. The exercise makes me feel fitter, generates natural endorphins and makes me feel happier.”

Helen Walker, Chief Executive of Carers UK said:

“Carers have had an extremely challenging time during the pandemic, and many have seen their own health and wellbeing significantly impacted by their caring responsibilities during this time Now more than ever, finding ways to improve carers’ health and wellbeing is crucial. Caring for someone who is older, disabled or seriously ill can make it very difficult for carers to prioritise their own health and wellbeing on a day-to-day basis.

“We’re delighted to introduce Carers Active April and the Barclays funded Healthathon as an enjoyable way for unpaid carers to find some physical activity that they enjoy, that they can benefit from and that they can fit around their caring responsibilities.”

For online activities, tips and motivation from other carers sharing their own stories to getting more active, carers and their families can visit Carers UK’s Carer's Active Hub to find out more, and sign up receive their exclusive Carers Active April Starter Pack.

-Ends-

Notes to editors:

Please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. to find out about case study stories, spokespeople, research and more.

More about Carers Active: Carers Active is a Sport England and National Lottery funded project delivered by Carers UK, aimed at supporting unpaid carers to be more physically active and improve their mental and physical health and wellbeing as a result. Physical activity is a vital part of a healthy lifestyle and helps with managing stress and anxiety as well as reducing loneliness and increasing feelings of positivity during daily life. Every minute of physical activity counts to improve carers' health, and it’s never too late for carers to start moving more.

The project sees Carers UK working with carers, organisations, and professionals to: 

  • Continue to help carers become more physically active and improve health andwellbeing, especially to reduce loneliness.
  • Raise awareness of the benefits of physical activity and ways to address barriers.
  • Increase opportunities for carers to access a range of different physical activities.

We are working to raise the profile of physical activity and carers, encourage positive action to make physical activity more possible for carers, fitting in with their needs, as well as deliver support directly to carers, through session delivery and volunteer involvement.

[i] About the research: This was a mixed methods research project which included a quantitative phase consisting of analysis of over 2000 responses to the State of Caring 2019 survey as well as a qualitative phase including focus groups and interviews with 37 participants. This was followed by a pilot project, testing the ideas from the research with 27 participants.

[ii] The Healthathon is supported by Barclays’ £100m COVID-19 Community Aid Package with its 100x100 Programme aimed at getting support right into the heart of local communities across the UK and reach those that need it. Through the programme, Barclays is supporting 250 UK grassroots charities with donations of £100,000 to deliver impactful on-the-ground support to local communities affected by the pandemic.

 

On 23 March 2022, the Chancellor, Rt. Hon. Rishi Sunak MP delivered his Spring Statement to Parliament. You can see the Statement in full here.

Responding, Helen Walker, Chief Executive of Carers UK, said:

“Many carers will be extremely worried about what they heard from the Chancellor in his Spring Statement today and unsure how they will meet the spiralling costs of energy and essentials they are facing in the coming weeks ahead, leaving them with very difficult decisions to make.

The 5p cut in fuel duty and the £500 million household support fund announced today will make a difference to some carers, but these are simply not enough to protect unpaid carers on low and moderate incomes from the devastating cost of living crisis the UK is currently experiencing.

Many carers are already dipping into savings, using credit cards, and cutting back on essentials to keep the person they care for warm and to protect their health. Carers have told us they are fearful of the effect increased energy bills in April are going to have on them and their families and that they will have to make difficult choices about eating or heating their homes.

Carers on Carer’s Allowance and Carer Element of Universal Credit are already in extremely challenging financial circumstances and it is bitterly disappointing that in April they will receive a real terms cut in the level of social security they are receiving.

While carers in receipt of Carer’s Allowance in Wales today heard they will be receiving a £500 one off payment, there was no such thing for unpaid carers in England or Northern Ireland.

Without additional support to manage the cost of living crisis, many unpaid carers will be pushed further into poverty that will have a lasting impact on their finances and quality of life, despite the £380 billion that carers have saved the UK economy since COVID struck in March 2020.”

 

“I am anxious & scared of what our living costs will be in the coming months. I’m unable to sleep and worried about surviving” (an unpaid carer, February 2022).

Carers UK strongly welcomed the fact that Peers have today successfully won an amendment against the Government’s attempt to revoke the Community Care (Delayed Discharges etc) Act 2003 in the Health and Care Bill during its report stage in the Lords. The Bill, unamended, would have taken away unpaid carers’ vital rights at the point of hospital discharge.

The amendment, which was led by Baroness Pitkeathley, had cross-party support from Lord Young, Baroness Hollins and Baroness Meacher. 

This was an important and decisive “win” for carers, showing that Peers understood and recognised the value of unpaid carers’ support. The vote of 205 to 155 against the Government’s proposals sends a very clear message to Government that they should protect carers’ rights as the Bill progresses.

The amendment safeguards carers’ rights by ensuring hospitals consult with unpaid carers at the point of discharge, builds in checks that the carer is willing and able to care and would ensure joint working to make sure that the carers are supported. Importantly, the amendment means that the rights would apply to adults providing unpaid care to other adults who are disabled or chronically ill, parent carers of disabled children and young carers who are so often overlooked.

Carers UK’s research and in-depth evidence from carers showed that, by not consulting, involving or supporting the unpaid carer, the health of the patient, as well as the carer, was being put at risk. This included patients being readmitted to hospital where carers said this could have been avoided.

Carers UK calls on Peers to support a cross party amendment, in the Health and Care Bill, to safeguard unpaid carers rights on discharge from hospital. The Health and Care Bill as it stands revokes the Community Care (Delayed Discharges, etc) Act 2003 which includes a requirement on hospitals to consult carers prior to discharge.  

The Health and Care Bill marks the first time unpaid carers rights will be removed without being replaced with additional or improved rights.  It is being debated at Report stage in the House of Lords.

Carers UK research[1] has revealed deep concerns over the hospital discharge process, and the impact of the recently implemented Discharge to Assess model on unpaid carers. It found that too many carers felt they had not been adequately consulted or provided with sufficient information to care safely, after the person they care for is discharged from hospital.

  • More than half of carers (56%) providing significant hours of care were not involved in decisions about hospital discharge.
  • Two thirds of carers (66%) did not feel listened to about their willingness and ability to care by healthcare professionals.
  • The majority of carers (61%) were not given enough information and advice to care safely and well after the person they care for is discharged from hospital.
  • Most carers (60%) say they receive insufficient support to protect the health and wellbeing of the patient or their own health at the point of hospital discharge.

The Government’s own impact assessment of the Bill recognises that some carers may be asked to take on additional hours of care that could mean they have to reduce their hours or give up work to care. It states: “Whilst we anticipate that in some situations carers may choose to, there is an expectation that unpaid carers might need to allocate more time to care for patients who are discharged from hospital earlier. For some, this could require a reduction in work hours and associated financial costs.”[2]

The amendment, which is led by Baroness Pitkeathley, has cross-party support, from Lord Young, and Baroness Meacher.  It seeks to place a duty on the NHS Trust to ensure that carers are consulted and to check that they are willing

and able to care, as well as ensuring that the patient is safe to discharge, not just “medically fit” to discharge, by putting the right support in place.

An unpaid carer said about their experience of hospital discharge:

“We discovered it (delayed discharge) when they were on hospital transport on the way home - no assessment, no provision of OT equipment or alternative care, literally had to drop everything to get a commode so they could go to the toilet when they got home. This was despite requesting clarity on discharge and how they would meet both carers’ needs two days previously.”

Helen Walker, Chief Executive of Carers UK, said:

“The removal of carers rights at hospital discharge marks the first time the Government is rowing back on the hard fought for rights for carers. It has the potential to increase the pressure on unpaid carers as well as increase the number of readmissions to hospital.

“Government is suggesting that rights in primary legislation will be replaced by statutory guidance, but this is not the same as having concrete rights in legislation.  Two earlier versions of Discharge to Assess guidance failed to even mention carers and refer to the existing legislation that is being repealed. 

“A patient’s care needs don’t just disappear once they have left hospital – their recovery and health in the longer term is in many cases dependent upon the day-to-day support of a family member at home.

“Too often unpaid carers are being cast out of the hospital discharge process when their ongoing support is critical for the patient’s health. It risks patients having to be readmitted to hospital because the right support at home isn’t in place. We can see from carers’ evidence and stories, it can have a catastrophic effect on carers’ health, wellbeing, and work.

“It is not just about the patient’s safety - unpaid carers must have the support services they need to be able to care safely for their relative or close friend.”

 

Baroness Pitkeathley, said:

If we want people to recover well at home after a hospital stay, it’s obvious that carers need to be involved in the hospital discharge process. Research from Carers UK and others has shown too many carers did not have the necessary information or contact details after the person they care for left hospital.  Having to provide more care impacts on their health, wellbeing, family, and many have to give up work to care.

“This amendment is essential to ensure that carers, of all ages, including young carers, are not overlooked in the hospital discharge process and have concrete rights and recognition in legislation.

“This is not the time to take away carers’ rights when we have relied on unpaid carers throughout the pandemic to take on more hours of care to support our health and care systems. Carers already feel invisible in this process when in fact they are partners in care and should be treated as such.

“If the Health and Care Bill passes as is, it will be a major watering down of carers’ rights by the Government and a risk to patient safety.”

 

[1] Carers UK 2021 ‘Carers experiences of hospital discharge – Discharge to Assess

[2] Health and Care Bill- Impact assessments for Adult Social Care Provisions (published 10.01.22)

The impact of caring on peoples’ physical and mental health across England remains high and is worse for those from some groups, according to the latest data analysis by Carers UK. [i]

The findings are revealed in the report ‘Carers Health and experiences of primary care, the charity’s examination of unpaid carers’ responses to the 2021 GP Patient Survey. This annual research is commissioned independently by NHS England to identify patient experiences and general health. Of the 850,000 responses, nearly 1 in 5, (18%) have some unpaid caring responsibilities. [ii]

The analysis found that:

  • 60% of carers report a long-term health condition or disability compared to 50% of non-carers
  • 70% of lesbian, gay, or bisexual carers report a long-term condition compared to 60% of straight carers [iii]
  • Carers from some backgrounds were less likely to say the healthcare professional they saw recognised and understood any mental health needs they had. Whilst 86% of white carers said they felt they did, this dropped to 78% of black carers and 76% of Asian carers.[iv]
  • 36% of lesbian, gay, or bisexual carers have a mental health condition compared with 13% of heterosexual carers – nearly treble the rate

The findings build on the charity’s ongoing work to understand the adverse impact of the pandemic on unpaid carers. [v]

At the height of the pandemic, Carers UK estimates that there were 13.6 million unpaid carers across the UK.[vi] As health and social care services closed and the need to care for family members, partners and close friends with disabilities and ill-health at home increased, millions more became unpaid carers overnight. Many services are yet to re-open. The charity’s Covid-19-specific research identified that almost three-quarters (72%) of carers have had no breaks at all since the first UK lockdown and 74% have said they are exhausted, as a result of caring.

Carers’ health is known to be worse than that of non-carers due to the pressures of the role and is compounded by many factors, including providing more than 50 hours of care each week. Caring has been announced as being a social determinant of health recently by Public Health England.

Of the 60% of carers who had a long-term condition, disability, or illness, almost two-thirds (64%) reported that their condition reduces their ability to carry out day-to-day activities. This shows that carers’ health and wellbeing is poorer than others and potentially affects their ability to care.

Lesbian, gay, and bisexual carers were most likely to report a long-term health condition or disability; and of this group, Three-quarters (75%) stated that it affected their day-to-day life, in contrast to 62% of straight carers.

Half (51%) of carers said they had avoided making a GP appointment in 2021 compared to 40% of non-carers. This rose to 61% of Asian carers and those from mixed ethnic backgrounds.

Matthew McKenzie, Co-Chair of the Black, Asian and Minority Ethnic Carers Forum said:

“This is a welcome, yet worrying, snapshot of the last year during such a stressful time for carers. That carers from some minority ethnic backgrounds are less likely to feel mental health concerns are understood by their GP, with some less likely to even make a doctor’s appointment, is evidence that better recognition and understanding is needed. It is clear carers from particular groups can face barriers to getting the support they need.”

Feeling lonely or isolated is a common experience for carers, as a direct result of their caring role. The impact of isolation on health is wide-reaching, including increased risks of death, cognitive decline, dementia, coronary heart disease and stroke.[vii]

The percentage of carers responding to the GP survey who said they felt isolated doubled from 2020-2021 from 9 to 18% and there was a sharp difference between some groups with 35% of lesbian, gay, and bisexual carers saying they have felt isolated in the last year compared with 17% of heterosexual carers. In terms of ethnicity, carers with a mixed ethnic background were more likely to report feeling isolated compared to other ethnic groups.

Dave Williams, Co-Chair of the LGBTQ+ Carers Expert Advisory Group commented: 

“This report makes for sober reading. It is clear the demands of caring significantly impact on carers’ physical, emotional, and mental health and the support carers need is sadly lacking.

“For carers in the LGBTQ community, isolation is further amplified as family members can and often do perceive that a non-heterosexual relationship implies a greater degree of availability to undertake a caring role.  For some LGBTQ carers, the demand to become a carer can mean a return to family environments and the loss of the support of their social network in their community of identity. There is a significant lack of awareness and understanding of the impact of this in terms of social isolation.”

Helen Walker, Chief Executive of Carers UK said:

“Our analysis shows the impact of caring on carers’ long-term health and wellbeing. Throughout the pandemic many have had no choice but to take on more hours of care as they continue to experience reduced support. This is having an impact on their physical and mental health, with the number of those caring feeling isolated doubling in the last year.

“Some carers are being even more impacted by the pressure of their role than others. Understanding how health inequalities affect carers and those from particular groups will be key to ensuring an equal recovery from the effects of the pandemic.

“The NHS depends heavily on carers. Pre-pandemic, carers saved the economy £132 billion a year. During the pandemic, this rose to £193 billion, more than is spent each year on the NHS in England. The increase in the number of people caring and pressures on services, together with funding shortages, means it’s more important than ever that we seek to identify carers and support their health and wellbeing.”

Carer’s UK is calling for:

  • GP practices to identify carers quickly and makes services available, as soon as possible.

Carers are still not routinely identified or supported by health and social care professionals and many are not aware of support available to help them look after their own health and wellbeing. GP practices need to be supported to speed up their identification of carers as early as possible.

  • The government to introduce a duty on the NHS to have regard to carers and promote their health and wellbeing.

This would help bring a more systematic approach to carers’ health.

  • The GP survey to continue and include caring as a specific question.

This is a key tool to improve knowledge and understanding of the health inequalities among marginalised groups.

The full report can be found here

‘Caring for Derek’ an hour-long film and follow-up to last year’s ‘Finding Derek’ was aired on ITV on 22 February. It followed TV presenter and journalist Kate Garraway and her family after her husband Derek returned home having spent more than a year in hospital after contracting COVID.

Responding to the ITV documentary ‘Caring for Derek’, Helen Walker, Chief Executive of Carers UK said:

“We thank Kate for powerfully shining a light on the huge pressures experienced by millions of carers like her across the UK caring right now for partners and family members.

“Caring is an extremely important part of our lives and holds families together. Most of us will become unpaid carers at some point for a loved one who is older, disabled or seriously ill.

“Every day in the UK, 6000 more people become carers. That’s over 2 million of us every year. Many don’t know where to get help or support and it can be a very difficult and emotional experience. It can feel lonely, impacting on every aspect of life. 8 out of 10 carers have told us that they have felt lonely or socially isolated.

“We are seeing unprecedented levels of queries from carers at the moment, because of the challenges of juggling work and care, finances getting tougher and care being under extreme pressure – as well as the pressures of the pandemic.  Programmes like ‘Caring for Derek’ are very important in raising awareness, make people think about their own situation and might help more start looking for help and identifying themselves as an unpaid carer.

“On top of that, as Kate also showed, navigating the social care system can be overwhelming. Chronically underfunded, many carers feel they cannot get the support they need and have no alternative but to give up work to care. Carer’s Allowance is the main carer’s benefit and at just £67.60 a week is the lowest benefit of its kind.

“Carers UK has called upon Government for an uplift and overhaul of carers’ benefits and has called on Government to increase the amount of social care funding, as what has already been announced as part of social care reform falls short of what families need now.

“As Kate illustrates in such an honest way, looking after someone can be tough, but carers should know they’re not on their own. Carers UK is here to listen, to share expert information and advice depending on each situation, to support carers in finding new ways to manage at home and at work. ”

On 21st February, the Government published its ‘Living with COVID-19’ plan.

Responding to the plan, Helen Walker, Chief Executive of Carers UK said:

“Lifting all restrictions and phasing out free tests leaves carers in the lurch- with yet more costs. They are left with all of the responsibility but none of the protections they need to keep their family safe.

“The idea that carers will have to pay for tests to keep their relative safe when they are providing essential care is extremely short sighted. If health and social care staff have free tests, why not unpaid carers when they often provide more care? Buying tests is not an option for carers on low incomes, especially when this is from Carer’s Allowance – the lowest benefit of its kind at just £67.60 per week. 

“Recently, 31 per cent of carers told us they were struggling to make ends meet.[i] These extra costs will pile on the financial pressure and make it impossible for carers forced to choose between ‘heat or eat.’  Poorer families will not have the protection that others can afford – that’s levelling down for unpaid carers and their families. 

“Carers yet again feel invisible and overlooked as the ‘Living with COVID’ plans have nothing in it to support them, or recognition of what they have done during the pandemic.  There is no recognition of the fact that 4.5 million more people took on unpaid care, £193 billion value of care has been provided in a year, and that carers have effectively propped up health and care services in protecting their relatives often at a cost to their own health, wellbeing and ability to do paid work.

“For carers, this will be returning to the early pandemic as family members providing essential care will again have to make a judgement call about whether they are COVID- positive or not and whether they can provide essential care. With social care in very short supply, there’s no one to step in at short notice. We know that unpaid carers’ mental and physical health is at rock bottom. They are exhausted and this will add greater anxiety.

“For some who are juggling work and caring, it’s an extreme blow if they are supporting family members who now feel that they must continue to shield. Some carers have told us they were extremely concerned about returning to the office without clear support in place.  Whilst many have flexibility, others do not."

Carers UK is calling for:

  • Free tests for unpaid carers to continue, along with free tests for the people they care for.
  • Greater protection and understanding in the workplace so that carers can continue to work and feel confident they do not expose their relative to additional risk.
  • Government to provide specific guidance for employers in relation to carers and people with specific conditions.
  • Carers to be included in any future vaccination plans, alongside health and care workers, recognising that they provide the bulk of care.
  • Clear recognition in the ‘Living With COVID’ plans of the essential role played by unpaid carers – treating them equally with NHS and social care staff.

 

[i] From Carers UK’s State of Caring 2021 report

The Chancellor, Rt Hon Rishi Sunak MP, today set out the Government’s response to the cost of living crisis and rising energy bills, following the announcement this morning by Ofgem of a 54% increase to the energy price cap, which will on average see bills rise by £693 a year from April 2022.  

As energy prices soar and millions of households across the UK face increased fuel and household bills, unpaid carers are even less well placed to cope than many with additional costs, without urgent measures.

The charity is calling for carers to be included in any extension of the Warm Home Discount scheme, additional support for carers with energy bills and action to help carers on Carer’s Allowance whose incomes are falling behind inflation.

With inflation now at 5.4% (December 2021) and predicted to rise further by April, plus soaring energy bills, there is widespread concern around people’s finances.  Benefits are set to rise by 3.1% in line with CPI in September 2021 leaving a gap of 2.3% for people on the lowest incomes – essentially a real term cut in the value of their benefits.

Carers often face higher bills – particularly energy bills – than the wider population when caring for someone frail or unwell and desperately need targeted support to ensure they can continue to pay their bills over the coming months.

In our State of Caring 2021 report[i], published in November, 23% of unpaid carers said they did not have enough money to manage their monthly expenses. Many told us that they were anxious about covering even basic costs this winter.

A further 18% said they are in or have been in debt because of caring in the past year, and 6% could not afford utility bills like electricity, gas, water, or telephone bills. These figures sharply rise to 44% of those providing more than 35 hours of care per week.

More than a third of carers (36%) have told us their finances have got worse since the start of the pandemic. Of those carers who told us they are struggling to make ends meet, 13% have cut back on essentials like food and heating. For those in receipt of Carer’s Allowance, this picture is even bleaker: a fifth (20%) are having to cut back on essentials and 19% using credit cards or having to borrow from family and friends. 

One carer told us: “Carer’s Allowance is so low that my teeth are starting to fall out because I can’t afford the dentist for me and my son. Energy prices are escalating – I dread my Winter fuel bill.”   

Helen Walker, Chief Executive of Carers UK, said:

“We are seeing unprecedented levels of stress and financial worries piled on unpaid carers. Many were already struggling to manage their monthly expenses and the increases in energy bills and cost of living could push them into financial difficulty.

“It is absolutely vital that the Government acts urgently to ensure that carers are supported in the face of the UK’s cost of living crisis, and by any short-term intervention the Government makes, for example by extending the Warm Home Discount scheme. Steps must also be taken to address the longer-term financial insecurity carers face.

“Without additional support, unpaid carers could be pushed into poverty that will have a lasting impact on their finances and quality of life. Carer’s Allowance is the lowest benefit of its kind and must be reviewed. The Earning Threshold of Carer’s Allowance must be increased to ensure that carers are able to choose to work and are protected from financial hardship.”

 

[i] State of Caring 2021

Commenting on the findings of the ADASS ‘Winter Contingencies Survey,’ Helen Walker, Chief Executive of Carers UK said:

On the anniversary of the publication of Joint Committee of Vaccination and Immunisation (JCVI) advice on priority groups (30 December 2021), Helen Walker, Chief Executive of Carers UK said:

The Government has today taken steps to ensure that unpaid carers can use a specific letter to identify themselves to gain priority for their booster jabs for COVID-19 along with paid care workers if there are long queues.  Carers UK has welcomed the fact that the Government has made unpaid carers part of the priority groups for vaccination.

Carers UK and Centrica are delighted to have won the prestigious award for 2021, in recognition of the significant achievements of an innovative three-year strategic partnership.

Carers UK is delighted to have been chosen by Bank of England employees as one of their charities of the year alongside Demelza Hospice Care for Children and WWF. The partnership starts now and ends in 2023.

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