Your members’ magazine

Issue 58 | Summer 2021NEWS • CAMPAIGNS • SUPPORT • EXPERIENCES

Carers Week 2021Find out how you can get involved

An extra pair of handsAuthor Kate Mosse shares her caring experience

We unveil our ‘Five-year

direction of travel’

Caring for someone with anxietyTips from an expert

Carers aged over 55 are less active than other adults aged over 55

Three quarters (76%) of carers aged over 55 do not feel that they are able to do as much physical exercise as they’d like to do

Carers are more likely to be inactive 46% carers compared with 33% of all adults

Carers are much less likely to be active 14% carers compared to 54% of all adults

Carers and Physical ActivityOur new report, ‘Carers and Physical Activity’, looks at ways to support carers aged 55+ to take part in more physical activity. You can read more about our work with Sport England in this area on page 28.

Key findings

Top reasons carers would take part in physical activity:

To relax/unwind Better

mental health

Better physical

health

Biggest barriers to physical activity:

Not having the time (88%)

Not being motivated (71%)

Not having anyone to go with (59%)

not having anyone to go with (59%).

Unable to afford the costs (67%)

For active carers, a pattern of being active...

Leads to an increase in: • Life satisfaction • Happiness• Feelings of worthwhile

Leads to a decrease in: • Anxiety

Find out more: carersuk.org/news-and-campaigns/campaigns/carers-and-physical-activity

Welcome

CARERS UK HELPLINET 0808 808 7777Opening hours: Monday–Friday, 9am–6pmE advice@carersuk.org

KEEP IN TOUCHCarers UK20 Great Dover Street, London SE1 4LXT 020 7378 4999 E info@carersuk.orgcarersuk.org

Carers ScotlandT 0141 445 3070 E info@carerscotland.orgcarerscotland.org

Carers WalesT 029 2081 1370 E info@carerswales.orgcarerswales.org

Carers Northern IrelandT 028 9043 9843 E info@carersni.orgcarersni.org

We connect carers so no one has to care alone

We campaign together for lasting change

We innovate to find new ways to reach and support carers.

Our mission is to make life better for carers:

We give expert advice, information and support

Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097). Registered office: 20 Great Dover Street, London, SE1 4LX. © Carers UK June 2021

Welcome to your latest issue of Caring magazine, in which I am delighted to share with you the plans for our new Direction of Travel.

It’s hard to believe that this is the fifth issue of the magazine written since the pandemic started, and just how much has changed since then. We’re gearing up for our second virtual Carers Week, something that wasn’t part of the plan but that has opened up so many brilliant opportunities for carers to get involved irrespective of their location or ability to travel. This year’s theme is Make Caring Visible and Valued – you can find out more about what we’ve got planned on page 10.

We’ve certainly not rested on our laurels over the last few months, as you’ll see from some of the brilliant stories of campaigning, volunteering and partnership in this issue. As always, our focus has been on listening to what carers want from us and fighting your corner;

holding the government to account on their manifesto commitments and calling for urgent, long-overdue social care reform that ensures unpaid carers get the practical and financial support they need.

When we set about creating a new five-year strategy for Carers UK in late 2019, we couldn’t possibly have foreseen what was to come. As has been our approach throughout the pandemic, we quickly responded to what carers need from us – now and in the coming years – and I’m very proud of the result: Vision 2025. I’m particularly excited to share with you our ambitions to make caring the 10th protected characteristic, and what that will mean for carers across the UK.

Stay safe, Helen

In this issue...

Our Direction of Travel

A positive focus

Kate Mosse interview

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Flexible working options for carers as we leave lockdown

News from Carers UK

Save the date: AGM and Members’ Conference 2021This year’s Annual General Meeting (AGM) and Members’ Conference will be held on Thursday 14 October 2021 and will take place online. We will be sending out more details in the coming months, but please save the date in your diaries.

You can watch all the films at carersuk.org/flexibleworking and download the guide at carersuk.org/flex-working-guide

Share and Learn videos

Want to join our online Share and Learn sessions, but struggle to find the time? You can now access recordings of our Share and Learn videos online.

Current videos include Latin dance for beginners, classical music concerts with Orchestra Vitae and tips for bedtime rituals from Sound Asleep Club, including a short meditation exercise to help you relax.

Access the videos at carersuk.org/share-and-learn-videos

If you are balancing work with caring responsibilities, you may be feeling anxious about how the end of government COVID-19 restrictions will affect your employment. You may wish to continue with certain flexible working options, such as working from home, or want to make longer-term changes to how and when you work.

Supported by Barclays LifeSkills, we have created a series of short films and a guide for carers balancing work with care. The short films feature Ally, Jane and Niki discussing how different working options have benefited their lives as carers, and include their tips on how to make a flexible working request.

You can also download the Let’s talk about flexible working guide, with practical information on how to start the conversation with your employer.

4 carersuk.org

Learning to be Carer Aware

June is the Month of Community

When you’re caring for someone, it’s important for your friends, family, community and employers to understand the daily stresses and strains you’re going through. That’s why we are grateful to the Masonic Charitable Foundation who have provided a grant of £48,204 to Carers UK for our Learning to be Carer Aware project. This project is about having more conversations about caring and empowering people to reach out and offer support to the carers in their lives.

edenprojectcommunities.com/blog/month-of-community

The past year has been incredibly difficult for us all – locally, nationally and globally. But through it all, one positive was how individuals came together to support each other through the pandemic, with many organising actions within their communities to be there for those in their time of need.That’s why a Month of Community has been arranged for June – an opportunity for us to come together, encouraging people to reconnect as lockdown restrictions change – and help both communities and individuals start to recover.

It will create a focal point for us to think about and join in with things that are going on in our communities, our neighbourhoods or, indeed, online. A chance to bring people together, share some community spirit and to celebrate and say thank you to one another for having been there through such tough times.

We’re proud that Carers Week is one of the activities to be focussed on – and how the need for unpaid carers to be visible and valued has been included. But there are various other activities going on throughout the month to get involved with including Volunteers Week, Loneliness Awareness Week and the Great Get Together. Visit:

We are working with the London Freemasons (there are 35,000 Freemasons in London) to raise awareness of the vital role that carers play and delivering a series of training events to Freemasons and other community groups this year. Are you involved in a hobby, faith or community group which might enjoy an interactive learning evening about the vital role of carers, and how we can all support carers more? If you are, let us know by emailing membership@carersuk.org. We may be able to speak at your group’s meeting.

@carersuk 5/carersuk

News and campaigns

Helen Walker introduces our new direction of travel for Carers UK and what that means for our members, and all unpaid carers in the UK.

Vision 2025 – our Direction of Travel

When I joined Carers UK in December 2018, we had two years left of our five-year strategy, so I immediately set about learning the ropes and undertaking a strategic review. No sooner had I presented my plans for that strategic review to the board of trustees in early March 2020, the pandemic hit and everything changed. Carers UK staff across all four nations transitioned to home working pretty smoothly, mostly thanks to the can-do attitude of the staff team. Foremost in our minds were unpaid carers, and how we could better support you at a time when services were closing, government guidance was constantly changing, and you were doing more than ever while propping up a health and

When we picked up the strategic view in September, it became very clear that a traditional five-year plan for Carers UK just wasn’t going to cut it in this new world, and so we set out Vision 2025 in a very different way to that we had planned. Vision 2025 is a five-year Direction of Travel – an ambitious plan for unpaid carers – that will allow us to be reactive and flexible to support carers as best we can in this extraordinarily fluid world.We know that carers will be needing even more support as we come out of the pandemic: respite care and support services re-opening, flexible working challenges addressed, financial issues created by the pandemic resolved, grief not processed during this period or the mental health ticking timebomb of lockdown addressed, getting both vaccines and then the annual booster – and the unknown issue of caring for those with long COVID.

social care system operating beyond capacity. The nation ‘clapped for carers’ each week, yet not for the carers we clapped for: the unpaid carers, caring behind closed doors. Supporting those shielding, juggling work and care at home, unable to get to supermarkets or unable to afford food and using foodbanks.We had a lot of work to do to make sure that unpaid carers were on the government’s radar, and that of the NHS and social care services. We quadrupled our helpline hours overnight, launched online meetups, and updated our advice and information webpages up to four times a day as guidance changed so rapidly in those early days. With the positive news of a vaccine came our fight to ensure carers were included in priority six, and as we come out of the pandemic we continue the ongoing battle to get social care reform higher on the government’s list of priorities.

“The nation ‘clapped for carers’ each week, yet not for the carers we clapped for: the unpaid carers, caring behind closed doors.”

“Carers will be needing even more

support as we come out of the pandemic.”

6 carersuk.org

More about Carers UK: carersuk.org/about-us

Vision 2025: three core goals

“it is an ambition of ours to take best practice from all nations and support them into practice in the others.”

Vision 2025 will take Carers UK to our 60th anniversary, and that is an important milestone for which we have set ourselves three core goals to have carers better valued by society:

• to create a society that requires carers to be treated equally in all aspects of their lives

• to connect carers so that no one has to care alone

• to halve the time it takes for carers to recognise themselves as carers and get the support they need.

As a national charity we are very mindful of the differences in the devolved parliaments in how they support unpaid carers, and it is an ambition of ours to take best practice from all nations and support them into practice in the others.

We have split our new Direction of Travel into three pillars based on these goals; these are the three areas carers tell us are most important to them: Equality, Support, and Recognition.

Our staff team have worked together to develop a new set of values to reflect the way in which we will need to work in order to deliver our goals: Attentive, Ambitious, Achievers.

Underpinning all of this we will change and improve the way we measure and evaluate our impact, to prove we are making a real difference to the lives of carers, and focus on income generation because without money we can’t achieve any of this.

Our three pillars:

Our three goals:

Our three values:

Equality

Attentive

Support

Ambitious

Recognition

Achievers

Create a society that requires carers be treated equally

Connect carers so no one has to

care alone

Halve the time it takes to

recognise carers

@carersuk /carersuk

News and campaigns

RecognitionRecognition is the final pillar of the strategy and links all the themes together. We know that it takes two years on average for carers to identify as such. We also know that during that time, their own health, wellbeing, and financial stability suffers, and that by putting their own needs last their ability to care is also impacted. We therefore know, as is so often the case, that early intervention is best. But it shouldn’t be on the shoulders of carers alone to self-recognise – others should recognise them too.

SupportWe provide support in a variety of ways: this includes our campaign and policy work to get carers support from the government, and the direct support we provide to carers ourselves in the form of our helpline, forum, advice pages, and online support sessions. Our research underpins both to ensure we are providing and campaigning for what carers need and want at that moment in time.

EqualityUnder the equality pillar we will focus on policy and legal change. Here we state our overarching ambition to achieve the 10th protected characteristic for unpaid carers. In the Equality Act 2010, there are nine protected characteristics that cover age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, and sex. We think that caring, unpaid, for disabled, chronically ill or older relatives or friends who need support is missing, and want to see caring become the 10th protected characteristic. While this is a considerable ambition, by setting our sights high we believe it will enable us to achieve much en route to the final goal.

You can read Vision 2025 on our website here: carersuk.org/about-us/who-we-are/our-vision-2025

Vision 2025: three pillars

Primary care can do this; particularly GP’s, building on those registering as a carer for the COVID-19 vaccine. Pharmacists can do this. Carer friendly workplaces can do this. Schools can do this by introducing lessons about caring. The media can help to do this through the portrayal of carers.

In short, we have very clear end goals – the route we will take will be flexible, possibly even circuitous, but I am just as confident that carers will benefit as I am that their numbers will increase and all of us will be affected by caring at some point in our lives.

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Help and support

Jaycee La Bouche is a carer, laughter coach and poet. She will be running laughter workshops for carers as part of our Share and Learn sessions.

Why laughter is the best medicine

My name is Jaycee La Bouche, and I am a laughter coach and carer for my mother. I started running online ‘Laughter Medicine’ session for carers during lockdown. The sessions are based on the principles of laughter yoga, the global phenomenon being practiced in over 72 countries. A typical session starts with breathing exercises, gentle stretches and clapping, followed by laughter exercises combining imagination with a childlike sense of playfulness. Our natural human response is to join in when we see others laughing, thus laughter often bubbles up spontaneously and can become contagious.

Research shows that laughter lowers the level of stress hormones and stimulates the release of endorphins (also known as ‘happy chemicals’), making it a simple, yet powerful practice to counter the negative effects of stress, release pent up emotions and create a positive state of mind.

Laughter also encourages us to expel old, stale air from the lungs, boosting our energy levels and improving brain function.

In Carers UK Caring Behind Closed Doors report, October 2020, more than half (58%) of carers stated their physical health has been impacted by caring through the pandemic, with 64% saying their mental health has suffered. As carers, we encounter tremendous stress, not to mention the loneliness and social isolation that can occur as a result of our caring responsibilities.

The great thing about laughter is that it is a universal language, making it wonderful for removing social barriers. It’s not about

laughing at each other, but simply about laughing together and connecting in a fun and positive way. Anyone can do it regardless of age or ability. I have a lady who is a non-native speakerwho attends every session. Her daughter sets up the laptop and she follows along by copying what she sees on the screen. According to cultural anthropologist Mahadev Apte, “the more laughter there is, the more bonding occurs within the group”.

I believe there is no better way to shake off our worries, release tension and enjoy a feeling of light relief than with a good hearty laugh. Best of all it’s free and available to all of us 24 hours of the day!

Find the latest Share and Learn sessions and book your place at carersuk.org/share-and-learn

“Laughter also encourages us to

expel old, stale air from the lungs,

boosting our energy levels and improving

brain function.”

Taking place from 7–13 June, Carers Week is our annual campaign to raise awareness of caring. This year’s theme is Make Caring Visible and Valued.

Carers Week 2021News and campaigns

To find Carers Week activities in your area, visit carersweek.org/get-involved/activities

Our supporters and sponsors Carers Week is led by Carers UK, with the support of five other national charities in 2021: Age UK, Carers Trust, MND Association, Oxfam GB and Rethink Mental Illness. We are delighted that our headline supporter this year is British Gas, and to also have support from Nutricia.

About Carers WeekAs well as raising awareness of caring, Carers Week also highlights the challenges carers face and recognise the contribution they make to families and communities throughout the UK. It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.This year, carers across the country are continuing to face new challenges as a result of the COVID-19 pandemic. They need to be recognised for the difficulties they are experiencing, respected for all they are doing, and provided with information, support and understanding. To find out more, visit carersweek.org

Make Caring Visible and Valued This year, we will be focusing on not only recognising carers, but also valuing them for the vital contribution they make every day. That’s why we’re coming together this Carers Week to Make Caring Visible and Valued. Carers Week is brought to life by the individuals, groups and organisations taking action and running activities throughout the UK. These activities reach carers, many of whom don’t know that help is available. They support carers who need a boost to keep going, and enable carers to share their experience of caring both before and after the coronavirus outbreak. Activities also connect carers to support and information they might not know exists.

Join our campaign79% of carers have not been able to take any, or sufficient, breaks during the pandemic, so we’re calling on the government to increase funding for carers’ breaks. Support our campaign now by writing to your local MP and asking them to raise the need for better breaks support in Parliament. To get started, visit carersweek.org/campaign

How you can get involved

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Add Your VoiceThis year we want as many people as possible to add their voices to help Make Caring Visible and Valued. Whether you’re a carer or just someone who believes that unpaid carers in the UK deserve better, in a few clicks you can add your voice to our wall - and then encourage everyone you know to do the same.

Add your voice today carersweek.org/add-your-voice

Campaign with us: carersuk.org/news-and-campaigns

Helping employers support carers in the workplace

Employers for Carers, our membership forum for employers, is holding a series of Lunch and Learn sessions during Carers Week with organisations including HMRC, Bank of England, Asda, Next and Accenture. These sessions provide practical information, advice and guidance on working and caring, for both employees and line managers. Some Employers for Carers members are also running virtual drop-in sessions and ‘carer calls’ to enable carers to meet informally and share experiences and tips.

Download or print Carers Week resources at home

Visit carersweek.org/resources-and-downloads for window posters, stickers and more! If you’d like to show your support for Carers Week on social media, you can also find a Facebook frame and Twibbon on this page, along with other items to share on your social media. Also available for download is a short leaflet aimed at those who are new to caring or who have only recently started thinking of themselves as carer – perfect for sharing with any new carers you may know.

Share and Learn online: Carers Week edition

During Carers Week, we’re running a series of special online Share and Learn sessions, including a book reading with best-selling author Kate Mosse, journaling for emotional wellbeing with Flourish, Latin dance with dance teacher Mauricio and a sing-along to Motown hits with Jacky Webbe.Find out more: carersuk.org/share-and-learn

Celtic nations – would you Care for a Cuppa?Carers Wales, Carers Scotland and Carers Northern Ireland have joined forces to bring you the first Celtic Nations Care for a Cuppa session during Carers Week 2021. Carers are invited to come along for three sessions on 8, 9 and 10 June, with activities including crafting and bingo. Find out more and book via Carers Wales: carersuk.org/wales/help-and-advice/care-for-a-cuppa-in-wales

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Millions of carers have gone to extraordinary lengths over the past year to look after and support those they care for, with many caring around the clock without any meaningful breaks. This increased support has often come at great personal cost and left carers exhausted, burnt-out, and increasingly worried about the future. Our research in October 2020 showed that two thirds of carers have not had any breaks at all since the start of the pandemic. That is why this Carers Week we will be shining a spotlight on the lack of breaks that carers have been able to take in the past year, and the worrying impact this is having

Ahead of Carers Week 2021, we have launched a new campaign to highlight the urgent need for carers to be better supported to take breaks from their caring responsibilities.

Support our Carers Week campaign for better breaks for carers

News and campaigns

To find out more, and get involved with the campaign, visit: carersweek.org/campaign

on their health and wellbeing, as well as their ability to work and live a meaningful life beyond caring. To address this situation, we are calling on the Government to urgently increase funding for carers’ breaks by an additional £1.2 billion, so all carers providing significant hours of care can take a break. To raise awareness of our campaign, please write to your local MP ahead of Carers Week. If you are currently caring for someone, make sure you tell them about their own experience of caring and how long it has been since you had a meaningful break. We have provided a template letter for people to send.

12 carersuk.org

Campaign with us: carersuk.org/news-and-campaigns

We are delighted to announce that the following Members of Parliament have agreed to be Parliamentary Champions for Carers Week 2021:

• Munira Wilson (Liberal Democrat), Member of Parliament for Twickenham

• Caroline Lucas (Green Party) Member of Parliament for Brighton Pavilion

• Steve McCabe (Labour Party), Member of Parliament for Birmingham Selly Oak

• Dr Lisa Cameron (Scottish National Party), Member of Parliament for East Kilbride, Strathaven and Lesmahagow

Responding to the announcement, Munira Wilson said:

“The value of what unpaid carers do for our society is immense. They hold our communities and families together. Throughout the pandemic, they have

Each Carers Week we ask a Member of Parliament from each political party to be a ‘Champion’ and to help raise awareness of carers, both in their constituency and across Parliament.

Parliamentary Champions announced for Carers Week 2021

been working day and night to provide care for the most vulnerable in our communities.

“Sadly, despite all that unpaid carers do, they very rarely get the recognition they deserve. Many feel exhausted and close to burn out following the pressures the pandemic has placed on this group.

“That’s why I want to be a Parliamentary Champion for Carers Weeks 2021. It’s so important we make these unsung heroes more visible and get them the recognition they deserve.”Caroline Lucas also said:

“We’ve learned so much about the work of carers during this coronavirus crisis

– their commitment and dedication and the value of what they do.

“But there are still millions of people in the UK whose care work goes on behind closed doors. They are the unpaid carers, looking after a family member or friend who has a disability, or a mental or physical illness, or who needs

extra help as they grow older. It’s time we properly valued and shone the spotlight on what so many people are doing to support others, not just during this crisis but always.

“I’m proud to be a patron of the Carers Centre for Brighton and Hove and I’ll be doing all I can in Parliament to highlight the work of carers and fight to ensure that they get the support they need and deserve.”

Munira Wilson

Steve McCabe

Caroline Lucas

Dr Lisa Cameron

@carersuk 13/carersuk

Help and support

Talk to other carers who understand 24/7 at the Carers UK Forum: carersuk.org/forum

14 carersuk.org

Sue’s story: 10 years of volunteering on our Forum

After ten years of volunteering in our Forum, we catch up with Sue to find out what her highlights have been and what advice she has for other members interested in volunteering

Volunteering for 10 years is a big achievement! What are your highlights? The 10 years have gone by so quickly that I’ve hardly noticed! The main highlight has to be the friends I’ve made along the way – albeit mainly in cyber space. Most I will never meet in ‘real life’, but I still consider them to be true friends nonetheless.

You’re currently volunteering as a Forum moderator. What does your role involve? I originally became a member of Carers UK in 2008 after I’d been caring for my mum (Alzheimer’s) for a couple of years and hit the brick wall that all carers hit after a time – the forum provided me with support and an outlet for my frustration. After a couple of years, I was asked if I’d consider becoming a moderator. At that time it wasn’t feasible as caring for my mum took up all my time. Then in September 2011, my mum went into residential care

and I was asked if I would reconsider. This time I said yes and became one of the team.

What do you enjoy most about volunteering?I get satisfaction knowing that my words may help someone – if my experiences can help just one person then it’s worthwhile.

And are there any challenges?Sometimes my biggest challenge is finding the right words to reply to someone who is going through a very difficult time.

What would you say to someone thinking about becoming a volunteer?I’d say – go for it. Volunteering as a moderator doesn’t have to take up a great deal of your time – just an hour here and there is enough if that’s all you can spare.

Equally you don’t have to have a lot of knowledge about ‘benefits’ or the ‘system’ – Carers UK has the Helpline for that kind of information. A kind and thoughtful word can mean so much to someone at the end of their tether.

“I get satisfaction knowing that my words may help

someone – if my experiences can help just one person then

it’s worthwhile.”

This is caring

Kate Mosse is an international bestselling novelist, playwright and nonfiction author with sales of more than eight million copies in 38 languages. Ahead of the release of her new book during Carers Week, we met with Kate to hear about her caring story

Kate Mosse: An Extra Pair of Hands

In An Extra Pair of Hands, Kate tells her own personal story of finding herself a carer in middle age: first, helping her mother care for her beloved father through Parkinson’s, then supporting her heroic mother in widowhood, and finally as ‘an extra pair of hands’ for her 90-year-old mother-in-law, Granny Rosie.

What inspired you to write ‘An Extra Pair of Hands’?I was asked to write An Extra Pair of Hands by the Wellcome Trust. They knew that I was part of a multigenerational household and had experience of caring, so they asked me to write about it.Social care – and how we support carers - is an enormous issue for our society and one that I think should have a much higher priority. I felt if I could share even a little bit of my experience, it might just be a contribution to helping to make caring more visible.

There are 8.8 million unpaid carers in the UK. We are everywhere, hidden in plain sight.

In the book, you talk about helping to care for your father with Parkinson’s, then supporting your mother, and caring for your mother-in-law, Granny Rosie. What’s it like balancing caring with a busy writing career?I’m in an enormously fortunate position as a writer. Of all the jobs, writing and caring are probably the most compatible, because I work at home most of the time. For many people, it’s a choice between their job and being a carer. What was hardest was coping with the grief when my father died (in 2011) and after my mother’s death in 2014. I stopped being able to write for about six months. But, I feel very, very lucky.

“There are 8.8 million

unpaid carers in the UK.

We are everywhere,

hidden in plain sight.”

continued...

16 carersuk.org

Connect with other carers: carersuk.org/forum

Photo credit © Ruth Crafer

17@carersuk /carersuk

This is caringWhat sort of support have you had? Do you manage to get any breaks from caring?One of the reasons that I wanted to write the book is that I feel that we don’t support our full-time carers enough, particularly if they’re caring for people with very complex needs. I am in a very privileged position in that I have a lot of support - there’s a lot of extra pairs of hands. My husband and I are a team. If one of us needs to go away for work, the other one can step in. My brother-in-law and my sisters live around the corner. We juggle it between us, but many people don’t have that option.There are certain moments when it’s not whether you could get somebody else to stand in for you, but do you want to? Often people would say, can’t somebody else be with your dad? And of course, the answer was yes. But the truth is, I loved my dad very much. I loved my mother very much. And I love Rosie very much. When they’re ill, or their health is particularly challenging, I’d always want to be there.

In the book, you focus on the positive sides of caring as well as the challenges. How has caring impacted you in a positive way? I was determined that [An Extra Pair of Hands] would be about care an act of love. Sometimes people are caring for people for whom they don’t have so much affection. But for me, I was (and still am) caring for people that I love. I’m now a full-time carer for my mother-in-law, and we are very close friends. As an adult, you don’t have the chance to get to know your parents as people. But the wonderful thing about everybody living together was that there was time to sit and talk. I learned things about my parents’ lives that I’d never known before. And that would not have happened without us being in a caring relationship. The reason for writing the book was to be positive about caring and about ageing. In the book, I don’t underplay the challenges of being a carer. We all know the tough stuff, but we need to talk about the positive stuff as well. For those caring with people with dementia or Alzheimer’s, it’s incredibly tough. But in the best circumstances, caring is a partnership, between you and the person you’re caring for, with all the joy that can bring.

What else have you learned?I’m quite a rushing about type of person, quite driven in my professional life, but through caring, I’ve learned patience. You have a completely different timescale. And if you embrace that, the experience will be much, much better. In our very time driven society, it’s thought the more quickly you do something, the better it is. That’s not right when you’re a carer. It might be quicker for you to get everything from the cupboard and get it ready, but people being cared for must be allowed their independence and their own agency. I’ve learned to live at a different pace. You must never take over, unless there’s no other choice.

“Caring is a partnership, between you and the person you’re caring for, with all the joy that can bring.”

18 carersuk.org

Connect with other carers: carersuk.org/forum

An Extra Pair of Hands is released on 3 June 2021. Preorder your copy at profilebooks.com/work/an-extra-pair-of-hands/

As well as the positive aspects of caring, you also write about the positive aspects of ageing. I think we need to reset the language used about ageing. I think it’s a big part of why care as an issue isn’t taken seriously and swept under the carpet. There’s so much negativity about older people as a problem. What we should be saying is what an amazing thing the NHS has achieved, that huge numbers of people now live into their 80s, 90s and even 100s. The conversation we should be having is about healthy, older living and valuing people, rather than thinking the minute someone stops working for money that somehow they’re less important in society.

You set up the Women in History campaign about women’s hidden voices. How do feel society has historically acknowledged caring, especially for women?The minute you go to the history books, particularly novels, you realise that this is a very age-old discussion. Once the novel really got into its swing, there were always unmarried daughters or younger sisters caring for siblings, brothers, or fathers when wives have died. It’s an enormous part of literature, actually, that idea of women’s lost voices

and lost opportunities. I’m a big fan of the Ulster-Scots writer Helen Waddell, who I cite in the book. She had to give up her university career in her early 20s to care for a stepmother for whom he had no fondness and who was clearly a very difficult woman. And if her stepmother had not died, releasing Waddell from that obligation, it is possible that we would have none of her brilliant writing.

Looking from the past to the future, this year’s Carers Week theme is Make Caring Visible and Valued. How do you feel that caring could be made more visible and valued?We’re deliberately launching [An Extra Pair of Hands] during Carers Week, and the reason I accepted the

invitation to write the book was feeling that many carers feel invisible. was a big decision for me to write such a personal book, but I felt I had a responsibility. If we all of us who are carers put up our hands and say, yes, I’m doing that, I’m caring, then the visibility will transform. The crisis in care and the provision of care is as important as climate change. Climate change is crucially important, but the care crisis is here right now, too. I think if we just talk honestly about our experiences, it will become impossible to ignore.

Finally, what would you like to say to our members?I have such admiration and support for everyone who is a carer, especially those who are doing so with little support and with health issues of their own. Carers save the economy £132 billion a year - we’re making a huge contribution! Our voices need to be heard.

@carersuk 19/carersuk

Celebrating a year of working together

News and campaigns

During Carers Week 2020, we announced the launch of our 12-month partnership with Rotary Great Britain and Ireland. Through our shared values of supporting others, we wanted to make a difference by reaching and connecting unpaid carers in local communities across the UK with the support available to them

With Rotary’s network of over 45,000 members in 1,700 clubs across Great Britain and Ireland, Rotary members are uniquely placed to champion good causes, foster community spirit and support some of the most vulnerable people in society.Over the past twelve months, we have recruited 151 Rotarians as Rotary GB&I Carers UK Volunteers, 58% of whom have experience of caring. Thanks to the hard work of these volunteers, many Rotary members have recognised their own caring role due to our partnership.

“We have learnt a lot from listening to people’s stories. We have also now been able to appreciate that the things we do, which we thought were more a duty to family members and friends, can be identified as a caring role. An awakening for us.” – Carers UK Rotary GB&I District Lead

Our partnership in action• In England, many of our volunteers are

volunteering at COVID-19 vaccination centres, and have also been putting up posters and leaving leaflets to reach carers getting their vaccine.

• In South Wales, our team have been hosting presentations for local Rotary clubs, sharing about our partnership and reaching many Rotarians who did not recognise their caring role.

• In Northern Ireland, our team has been working with the Belfast Rotaract Club, based in Queens University. They have been active in raising awareness of Carers NI on various forums and are hoping to be able to distribute resources when restrictions allow.

20 carersuk.org

To celebrate the first 12 months of working together, we spoke to each of our Nation Leads across England, Northern Ireland and Wales.

England: Cheryle Berry

“As a Rotarian and a carer, I was delighted when Rotary Great Britain and Ireland formed a partnership with Carers UK. I have been a headteacher and Director of Education working with young people and families throughout the UK. I saw first-hand the incredible work of carers of all ages and was full of admiration for their dedication and commitment.

“We never know what lies ahead of us and I am now a carer for my husband. The support of my Rotary friends and the advice of Carers UK have been invaluable, and our partnership gave me an opportunity to help other carers.”

Northern Ireland: Mark Davidson

“When I joined Belfast Rotary club, some twenty years ago, I wanted to gain a better understanding of, and thereby helping, various local charities/support groups. I wanted to be part of our

Volunteer with us: carersuk.org/how-you-can-help/volunteer

About Rotary GB&IRotary is one of the world’s leading humanitarian service and membership organisations. Through membership of their local clubs, Rotary members volunteer their time and talents in tackling important issues on a local, national and global level. Find out more about Rotary GB&I rotarygbi.org.

partnership to help people understand their caring role so they can access the support they are entitled to.

“The connection with Carers NI, as a hands-on organisation, has been essential. I have worked closely with Clare-Anne Magee from Carers NI, whose dedication and drive in support of a better life for carers has been inspiring. My belief is that our partnership with Carers UK perfectly marries the core principles of Rotary, along with the practical support offered by Carers NI.”

Wales: Peter Hamilton

“When we first launched our partnership, I was not aware of Carers Wales, but I did know was that there was an increasing need to inform our caring community about the support that is available to them.

“I was delighted to get involved in the partnership and have been working closely with the Carers Wales team whose support has been vital. Our partnership is making a real difference in getting to the difficult to find carers in need of support.

“We know that many people are not aware of the help available, especially in our rural communities. The future here in the principality looks bright and the partnership will flourish because of our great team.”

@carersuk 21/carersuk

Help and support

Smart meters are the next generation of gas and electricity meters. They’re being installed in homes across Great Britain at no extra cost, to replace traditional meters. They measure how much gas and electricity is being using, as well as what it’s costing and display this on a handy in-home display (IHD).

Both the IHD and the smart meter operate without the need to be connected to the internet. Rest assured, smart meters operate on a secure system, ensuring data is only visible to the energy

Like many carers, helping the person you care for manage their energy is just one task out of a long list of jobs that you would perform. A smart meter could make this process easier.

A smart meter could benefit you and the person you care for

supplier and authorised parties where consumer consent is given.

Smart meters enable accurate billing – meaning, the person you care for will only need to pay for the energy they actually use. Even better, smart meters send gas and electricity readings directly and securely to the energy supplier so no more rummaging around in a cupboard. This can help to enable greater independence for the person you care for, whilst taking an item off your busy to-do list.

“Smart meters...can help to enable greater independence for the

person you care for, whilst taking an item off

your busy to-do list.”

All images used with permission of Smart Energy GB

22 carersuk.org

This content was sponsored by Smart Energy GB

How does it all work?

To learn more visit: smartenergygb.org/about-smart-meters

Priority Services Register (PSR) The PSR is a free and voluntary system that some energy suppliers use to ensure the correct support is given to the most vulnerable customers. This support varies by supplier and by an individual’s circumstances, but can include:

• Large-format or Braille bills• Advanced notice of service interruption• Priority in a power cut• Nominee scheme: customers can ask

for communications (for example account statements or bills) to be sent to someone who has been nominated to receive them, for instance a carer.

Please note: Eligibility of smart meters and the AIHD may vary; Consumer action required to obtain cost savings and budgeting benefits of smart meters.

We all want to work smarter not harder. Smart meters could help to find ways to reduce energy waste around the home and save money. The IHD shows you in near-real time the amount of energy being used in pounds and pence. Allowing households to keep a closer eye on their energy spending habits.Good news! Smart meters are set up to work for both prepay and credit customers. A smart meter in prepay mode allows you or the person you support to top up whenever it suits; online, via mobile or at the shop – very helpful.When it comes to installing a smart meter, you can agree to a time slot and date with the supplier. An installer will never turn up unexpectedly. Get in touch with yours/their energy supplier about installing a smart meter.

Consumers who may be in vulnerable circumstances can contact their energy supplier to determine if they are eligible to be put on the PSR.

Accessible in-home display (AIHD) For anyone who is blind, partially sighted, or has difficulties with dexterity or memory loss, an AHID could make tracking energy usage easier. The AIHD has been developed in partnership with the Royal National Institute of Blind People (RNIB), and includes features such as large buttons and text-to-speech functionality.

“A smart meter in prepay mode allows you or the person you support to top up whenever it suits.”

Did you know?

@carersuk 23/carersuk

Help and support

Carer Confidence at workWith one in seven people now juggling work with caring for someone who is older, ill or disabled, as well as an ageing population, carers are a growing reality in the UK workforce

Since the COVID-19 pandemic began, an additional 2.8 million workers have also taken on responsibilities as unpaid carers. The Carer Confident benchmarking scheme builds on learning from Carers UK’s Employers for Carers business forum to help employers develop a more supportive workplace for staff who are, or will become, carers and to make the most of the talents that carers can bring to the workplace. The scheme aims to:• Create a clear path for

organisations to follow that will help them to

develop and sustain their support for carers, and understand the business benefits of doing so.

• Identify and address areas in which the organisation can improve to create an effective Carer Confident organisation.

• Measure the positive impact of changes to help the organisation work towards wider employer recognition schemes, for example across the Equality and Diversity and Inclusion agenda.

Carer Confident has three levels designed to support employers towards building a positive and inclusive workplace for carers.

Level 1: Active in addressing carer supportAt Level 1, a Carer Confident employer is one that is committed to supporting carers in the workforce through new policies, compliance with carers’ legal rights, and helps staff to identify themselves as carers and seek practical support.

Level 2: Accomplished in providing carer support The next step is Level 2. This is achieved when organisations have a process in place for carers to identify themselves and clear policies or guidance on workplace support. The organisation should also provide a range of practical support for carers and ensure all staff know about this and feel comfortable accessing it.

Level 3: Ambassador for carer support both internally and externallyA Level 3 employer goes above and beyond to champion carers within their organisation and externally.

24 carersuk.org

Making a difference for carers at Volunteer Expo Online

Raising awareness of caring on social mediaOur new Online Awareness Raiser volunteer role helps raise awareness of caring and the support available to unpaid carers through social media, while also providing a voice for unpaid carers with assistance from Carers UK.

Volunteers receive an online toolkit each month by email with suggested posts and social media graphics for Facebook, Twitter, Instagram and LinkedIn. By sharing posts through your personal social media accounts,

On 7-8 May we were pleased to be part of Volunteer Expo Online, a new UK-wide virtual volunteering show showcasing the impact of volunteering on society. As part of the free event, we reached out to thousands of potential volunteers and hosted a workshop on supporting carers in the UK.

If you attended the Expo, we’d love to hear how you found it. Please email membership@carersuk.org with your thoughts.

you can help us reach those who may not realise they’re caring with information, guidance and support.

If you are active on social media and would like to volunteer, visit carersuk.org/online-awareness-raiser

Volunteer Expo Online was hosted by Rotary in Great Britain and Ireland, who we are in partnership with to raise awareness of caring.

For more information about the event, visit volunteerexpo.co.uk

Find help and advice: carersuk.org/help-and-advice

They’ll have developed creative ways to support carers and involve them in the development of future policies for carers in the workplace. Carers will be supported through all stages of their employment, with the organisation actively promoting carers issues and providing a wide range of resources to help support carers throughout their journey.

The scheme was launched in 2019 and there are now over 30 employers who have received a Carer Confident Award. If you’re balancing caring with work, why not check whether your organisation is an Employers for Carers member and tell them about the Carer Confident scheme? Find out more at employersforcarers.org/carer-confident

Employers in Scotland are also encouraged to engage with the Carer Positive recognition scheme, which is sponsored by the Scottish Government and operated by Carers Scotland. For more information visit carerpositive.org

@carersuk 25/carersuk

This is caring

“Ella required support day and night... so I found myself caught up in a relentless care cycle”

Richard Dicks began studying with The Open University as a way to cope when his daughter Ella was diagnosed with a terminal illness.

A positive focus during difficult times

Though life seemed impossible at times, Richard says being able to study gave him something positive to focus on and that he found strength in Ella’s determination to keep smiling despite the challenges she faced through her eleven years.Richard hopes sharing his family’s story will help inspire and motivate others who may be facing incredibly tough times and show that there can be positives even in the hardest of situations.After suffering anxiety during his school days, Richard left education after college and worked in the building trade for several years. He had planned to retrain for a new career in 2009, however his family’s life took an unexpected turn. At three months old, his daughter Ella was diagnosed with a terminal

variation of a genetic disorder, known as 1p36 micro-deletion syndrome.

“She suffered from severe epilepsy, which prevented her from developing basic skills, like walking, talking and swallowing safely, so was left completely dependent,” explains Richard. “Ella also suffered from regular chest infections, which developed from common colds and influenza and often resulted in emergency hospital admissions, breathing support and sometimes intensive care ventilation. Ella required support day and night, often becoming critical in the early hours, without any warning, so I found myself caught up in a relentless care cycle.”

Coping with extremesAs a way to cope with the incredibly difficult challenges, Richard’s wife encouraged him to consider returning to his studies. “I was desperate to find a way of coping with the extremes I was facing and after a few years, decided to try an Access course with The Open University,” says Richard.

The OU’s Access module gave Richard the confidence boost needed to enrol for a BA (Hons) Open degree in 2014. It was through subjects like Creative Writing and English Literature that Richard quickly rediscovered his childhood passion for writing: a dream he had always wanted to pursue.

“Due to the unpredictable nature of Ella’s health, I found myself studying in many places: beside her many general ward hospital beds, in emergency hospital accommodation, and even sat in intensive care, on one occasion. I sometimes studied at night and occasionally, whilst looking after Ella’s baby sister, who has no health challenges.

“What I tried to do was impossible and my wife also suffered numerous health problems and had to have surgery several times – there were weeks when I was caring for three people, then picking up a study book.’

26 carersuk.org

Considering studying: carersuk.org/boosting-your-skills

“My message to other students would be to take this great opportunity and give it

everything you have, as even the impossible can be overcome. Let yourself start again.”

Despite this, Richard found strength from his family and his eldest daughter, whose fight helped to motivate him to finish his degree:

“I was motivated by Ella’s determination to overcome impossible health challenges and still find the spirit for a smile and this was enough to push me to start my University journey, however hard it was going to be. My daughter fought every day to stay alive for eleven years and I think it was her enduring courage that made me feel there was no limit to how much I should put myself through.”

Fulfilling a long-held dream

“My degree ended with the outbreak of the coronavirus,” says Richard. “Ella had been in hospital in September, December and February, where she was transferred to Southampton Intensive care from Bath RUH, and stayed for a further month, before coming home. During this time, The Open University offered extra tutoring, as they had every time things became unbearable.

“I received electronic notification of my graduation in August 2020, one month before Ella’s death. I was able to give her a big hug to mark my graduation and when the time came, wrote a poem for her funeral to say goodbye.”Richard’s wife, Louise, now works in the Public Health sector and has since set up a wellbeing and counselling business in Ella’s memory (www.galenawellbeing.co.uk), which Richard writes content and poetry for to help other families suffering loss and hardship.Though his family are still rebuilding their lives and grieving, Richard says that one day he hopes he will be able to turn his love of writing into his career.

“I fulfilled my childhood dream of studying writing with The Open University,

now I need to use my skills to realise a new dream. Looking back, I feel I always had the ability, but never the belief and The Open University helped me to believe.

“My message to other students would be to take this great opportunity and give it everything you have, as even the impossible can be overcome. Let yourself start again. I hope sharing what happened to me will help some people who think

‘I can’t do this’ begin to think ‘Yes, I will try’. That would be a big thing.”

To find out more or apply for The Open University Carers’ Scholarship Fund visit open.ac.uk/courses/fees-and-funding/carers-scholarship-fund

Article courtesy of Carly Sumner Sinfield, the Open University

@carersuk 27/carersuk

News and campaigns

Our new report, ‘Carers and Physical Activity’, looks at ways to support carers aged 55+ in England to take part in more physical activity, to improve their wellbeing and reduce loneliness.

The report was supported by Sport England, with funds from the National Lottery. We are grateful to the many carers who were involved throughout the work. The report found that unpaid carers aged 55+ faced significant challenges in being physically active, despite 87% wanting ‘to be fitter than I am’. Three quarters (76%) of carers said they are not able to do as much physical exercise as they’d like. The main barriers included:

• not having the time to take part in physical activity (88%)

• not being motivated (71%)

• not being able to afford the costs (67%)

• and not having anyone to go with (59%).

Carers aged 55+ are much less active than other adults aged 55+ and have poorer health. 46% of carers are ‘inactive’, compared with 33% of adults aged 55+.

Carers with disabilities, working carers and carers who are struggling financially are particularly affected. Carers who are able to be active showed improved health, life satisfaction, decreased anxiety. They felt better connected and less lonely. We are delighted that we’ll be continuing to work on this area with Sport England over the next three years, with carers at the heart of what we do. Carers UK and Sport will develop a dedicated Carers Active programme to support carers to become active and work to encourage physical activity as part of mainstream carers’ support. This will be done through direct activity with carers, sharing good practice, raising awareness and learning from carers’ views. We will also be working with physical activity providers to help them be more aware of carers’ needs. We continue to work on some of the ‘bigger issues’ in our broader work – making sure that carers have sufficient care and support, campaigning to improve carers’ incomes and making sure that caring is seen as a social determinant of health.

You can read the full report here: carersuk.org/carers-and-physical-activity

Working with Sport England to support carers to be physically active

28 carersuk.org

Two Hearts Pizzeria reunites a carer and her friend

Connect with other carers: carersuk.org/forum

In April, our friends at Virgin Media ran two pop up pizza restaurants, one in Edinburgh and the other in London, bringing together people who hadn’t been able to see each other, due to lockdown restrictions, through the power of their super-fast broadband technology

Most guests were taking part after having entered a competition, but they also offered a chance for an unpaid carer to experience this once-in-a-lifetime opportunity to enjoy a virtual lunch with a friend in another city. On the day, Jacqui and her husband were collected and dropped off at the Two Hearts Pizzeria in Edinburgh. As they sat at their table awaiting their food, suddenly a hologram of Jacqui’s friend Beverly appeared across the table from them, with Beverly having a matching experience live from London.

You can watch the video here: https://vimeo.com/542757655/870684cc4a

Having been apart for so long it was both a novel and emotional lunch with Jacqui saying, “It was like we’d never been apart – we just sat chatting like we would if we were down in London” and Beverly adding, “It was more real than I imagined it could be”. We’d like to say a thank you to the Virgin Media team for bringing these two friends together after a year and a half apart.

@carersuk 29/carersuk

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Help and support

“The changes in lockdown restrictions will mean taking baby steps back towards a new ‘normal’ for us, like getting my daughter back to the day service.”

Member Marie on the new normal and connecting with other carers at our Care for a Cuppa sessions

Adjusting to caring after lockdown

I’m what is known as a ‘sandwich carer’ as I care for my elderly parents, my mum has had several strokes, and I care for my 26-year-old daughter who has complex needs, including physical disabilities and autism.

Lockdown in some ways wasn’t too different for us as we’ve always been quite socially isolated. Before COVID-19 though, my daughter did attend a day service three days a week. That was some brief respite for me, but they closed last March and began working remotely. I stepped into their shoes by making a timetable and supporting my daughter to do the work at home.

The changes in lockdown restrictions will mean taking baby steps back towards a new ‘normal’ for us, like getting my daughter back to the day service. I already know this isn’t going to be easy as she is very reluctant to go outside and has lost a lot of her mobility whilst we’ve been in lockdown. We also don’t know exactly what the ‘new’ world out there looks like. I feel like I’ve lost my confidence too. Just getting back into things like driving after hardly driving anywhere for over a year is going to be hard.

I wish people would understand that caring is 24/7 with no pay and very little respite. It has its ups and downs as you fulfil many varied roles, but as time goes by you become an expert in your own caring role.

The Care for a Cuppa sessions have been a real lifeline for me. To be able to connect with other carers and not feel so alone during this challenging past year as meant so much to me.

I really look forward to them each week and always sign up well in advance, so I don’t miss out.

I’d say to other carers who are struggling to reach out for some support and not to feel like they have to suffer in silence. Carers UK are there for us and have so much help available in many different formats, including the online forum, the Helpline and the weekly Care for a Cuppa sessions. They understand what we’re going through and are there to listen. Nobody needs to go through it alone, even during a pandemic.

“The Care for a Cuppa sessions have been

a real lifeline for me. To be able to connect

with other carers and not feel so alone

during this challenging past year as meant so

much to me.”

32 carersuk.org

Find help and advice: carersuk.org/help-and-advice

Power of attorneyHow to go about seeing if power of attorney the right choice for you, how to go about arranging one, and what alternatives are available to help make decisions on behalf of someone.

Using servicesHow to lighten your load when dealing with companies, such as banks and utility providers, on someone’s behalf.

Health mattersHow to get the most from health services, from making appointments to talking with health professionals.

Top tips from carersManaging services for someone else

Download the free factsheets at carersuk.org/ tips-from-carers

Do you often need to step in to help make appointments, pay bills or make important decisions on behalf of someone you care for? Based on the insights of carers who have been there, we have three top tip sheets to help:

1 2 3

@carersuk 33/carersuk

Advice and information

Lynn Crilly is from Surrey and is a mother, mental health counsellor and author of the Hope with Mental Health book range, covering anxiety, depression, OCD and eating disorders

Ask the expert: Caring for someone with anxiety

How people act and react around someone with anxiety can be an important part of their recovery. However, promoting genuine acceptance and understanding can be a challenging task. I have listed below some suggestions and ideas to help cope with some of the challenges of caring for someone who has an anxiety disorder or who may be at risk of developing it.

1. Avoid making personal criticismThe way in which you react to your loved one’s anxiety can have a big impact. While their behaviour and low mood may at times be frustrating as well as upsetting, showing exasperation or anger is unlikely to be helpful. Try to detach yourself from the way they are acting. Remember that it is part of their illness and that the person you love and care for is still very much inside.

2. Acknowledge small steps forwardThe road to recovery from an anxiety disorder can be a long and complex one. The recovery process may involve medication and therapy, as well as a willingness and courage on the part of the person with the illness. Frequent encouragement and praise will help to give them the strength to take the next step on this journey.Encourage the person you care for to keep moving forward, recognising even seemingly small accomplishments. Whether it’s keeping up with therapy appointments or GP visits, sticking to prescribed medication, or even simply admitting how they are feeling, the reaction of loved ones can be a powerful motivator.

3. Encourage self careWhen someone has an anxiety disorder, they

may lose interest in both their surroundings and themselves. They may feel that looking after their own wellbeing is exhausting, unnecessary and out of reach.However, self-care is not a luxury; it can in fact be an important part of their recovery plan. Encourage them to adopt good sleeping habits, eat well and take exercise – anything from walking or cycling to yoga or dance

– and perhaps join them in doing so. Help them make a list of things they enjoy (or have done in the past), such as a good book, long bath or their favourite funny film, so that have a bank of tools improve their own mood. Encouraging them to set mini goals can provide a really positive focus and something to aim for.

Lynn Crilly’s latest book, Hope with Anxiety, can be found on Amazon or on the Waterstones website.

34 carersuk.org

Connect with other carers: carersuk.org/forum

Forum Q&A QQI care for my mum

who has Alzheimer’s. I also work five days a week and I’m struggling with the menopause. Things are an emotional rollercoaster and the hardest thing for me is asking for help. I don’t have the emotional energy to do it but I’m trying to work on that.

My brother has been caring for his wife who has a progressive genetic condition. She is in a wheelchair and the house is designed around her. My brother sleeps on a mattress with wheels so it can be rolled out of the way. She refuses to go to respite or have carers that she doesn’t know and has fallen out with many of them, including her mum who is now banned from the house. My brother has no time to himself and has lost so much weight. She seems blissfully unaware of how low he is. I have no idea how to make life better for them, does anyone have any idea how to proceed.

Talk to other carers who understand 24/7 at the Carers UK Forum: carersuk.org/forum If you need information or support, our Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can email advice@carersuk.org

Replies from the forum...“You are juggling a lot! I know what you mean about being bogged down in everyday survival, that you have no emotional energy left. It sounds like some breathing space is needed, whether that’s taking some time off work or taking the plunge and getting a needs assessment for your Mum and a carer’s assessment for you.”

A1

“It shows courage and strength to ask for help. Here at Carers UK we want you to know that you’re not alone, we are sure that many on here will understand exactly how you feel and offer support. Carers UK run online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to: carersuk.org/cuppa”

A2

Reply from the forum...“Your brother needs time to sleep, after all a bed on wheels is not going to let him! Can you sit down with him in a day or two and think about a list of current issues, what she needs and what he needs? The only way he is going to get a decent sleep is to change something. Since social services provide limited day care, no night cover, an application for NHS Continuing Healthcare should be made. Ultimately, given it’s a serious condition, is it better for her to stay in residential care?”

A1

@carersuk 35/carersuk

Carer [noun] /’keərə(r)

Looking after someone?Find out about the help and support available at carersweek.org

[1] Cares (unpaid) for family or friends who have a disability, illness or who need support in later life:

Washing them. And their laundry. And their dishes Keeping appointments. And records. And tempers. Giving medicine. And time. And hugs. Filling forms. And fridges. And silences. Dealing with doctors. And nurses. And pharmacists. Andsocialworkers.Andbenefitsagencies. And care workers. And a lack of sleep.

[2] Needs support to manage a life of their own.

Headline supporter

CarersWeekhasbeenmadepossiblebyCarersUKworkingwithfiveothernationalcharities.Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and acompanylimitedbyguarantee864097.Registeredoffice20GreatDoverStreet,LondonSE14LX.