Working together to support carers

The coronavirus COVID-19 pandemic has placed new or additional caring responsibilities on thousands of people, who have taken up the role of looking after relatives and friends who are disabled, ill or older and who need support.

The responsibilities of caring for someone else can impact on all aspects of your life, no matter how willing and prepared for the role you may be – from relationships and health to finances and work.

This Carers Week (7 – 13 June 2021) we hear from those leading our Sussex carer support organisations, who share their insights in to the challenges, experiences and rewards of being a carer locally during the past 12 months.

Tom Lambert, Chief Executive of The Carers Centre for Brighton and Hove; Sonia Mangan, Chief Executive of Carers Support West Sussex; and Jennifer Twist, Chief Executive at Care for the Carers, have co-authored this special blog written to mark Carers Week 2021.

Anyone can find themselves as a carer. From the 85-year-old husband caring for his wife with Dementia; an 18-year-old looking after their Mum with a long-term illness; a young person looking after a parent with an alcohol problem; or a man looking after a partner with cancer whilst continuing to work and support the family.

There is no one type of carer, which is why each case is taken on an individual basis and local carers support organisations are there no matter what the caring role.

Carers report that the top three challenges they face are experiencing feelings of stress; managing their own physical and mental health and not being able to take time away from their caring role.

Through our work at the carers support organisations in Sussex, we really do recognise that caring can be both wonderful and tough. It can also often become a fulltime job – leaving carers with little or no time for themselves.

The challenges of being a carer in Sussex

Carers face many challenges in their daily roles, some far more visible than others. Caring can of course take a physical toll, especially where lifting and/or hoisting of the person they care for is required. Other simple things that many of us take for granted such as sharing housework and shopping tasks with a partner might not be an option for some carers. In other familial caring relationships, perhaps a grown-up son/daughter with significant needs could require personal care from an elderly parent.

Taking on a caring role can also result in a reduction in family income, making it difficult to work full time. The poverty rate among working-age carers increases with the number of hours they care for, particularly after 20 hours per week. In some cases disability or illness means that no one in the household is able to continue in paid work.

There really are so many variables to people’s circumstances.

The emotional challenges that carers face can include feelings of isolation, having little time for yourself, stress within relationships at home and financial pressures exacerbating that stress.

Sussex is diverse in many ways, geographically and demographically. But this diversity can impact carers including difficulty accessing services for those in rural communities compared to carers in urban settings, and language or cultural barriers for those from ethnic minority backgrounds, for example.

Caring can be a hugely rewarding experience too

While tough, caring for someone can also bring much joy – with people being brought closer together through the care of a loved one. The empathy that many carers develop can help them in their lives, with many directly transferring their skills into caring professions or volunteering roles within their community.

Carers in Sussex have access to carers support services in their locality which can provide a huge amount of personal support for them and new friendships.

Caring during the coronavirus (COVID-19) pandemic

The impact of the COVID-19 pandemic on carers has been profound.

Firstly, the loss of the term ‘carer’ as a way to identify family/friends who look after someone. While acknowledging the incredible work of NHS staff during the past year, initiatives such as ‘clap for carers’ has led to the term being more associated with paid care and medical staff. At carers centres we have heard genuine feedback from family/friend carers to say they feel forgotten or that they didn’t want to come forward for help for fear of burdening busy professionals.

Our increased reliance on technology to engage with carers has led to many carers being digitally-excluded because they either can’t or don’t want to use the internet to access support. Where possible, Sussex carers support services have been seeking grants to secure IT devices for those who want to, and to upskill our volunteers in the use of digital communication.

However, the positive side of this development is that many other carers have accessed more support in the past year than they ever were able to before. This could be because of the distance they would have had to travel before or because they feel unable to leave the person they care for at home alone. Either way, video calling is here to stay and we foresee a hybrid model of support for carers in the future.

The COVID-19 vaccination roll-out for carers

NHS services and carers support organisations across Sussex worked together to ensure that as many carers can access a COVID-19 vaccination as possible. Our partnership work has had a real impact on the lives of thousands of carers who otherwise would have been relying entirely on their age group being called forward.

The other benefit of our support in the vaccine roll-out has been the general increase in carers coming forward for support. Awareness raising and carer identification is a shared goal and one that only strengthens the case for further carer support in Sussex.

Working together to support carers

Sussex carers’ organisations have a long history of working with our local authorities and the NHS to support carers.  The organisations are commissioned to act as the first port of call for local carers.  At the core of this role, local carer organisations provide information, advice and emotional support.

Caring for somebody goes hand in hand with navigating the – often complex – health and social care system, and our teams are there to support carers to find their way through the maze of services. NHS staff and social workers also refer carers to our services, as they are often the first professionals that carers reach out to for support.

Our organisations are carer-led, and we support carers to speak up on the issues affecting them and the people they care for. This enables us to help our health and social care partners “think carer”, by providing training to NHS and social care teams, and advising on carers’ experiences and needs when services are being planned or reviewed.

What is one thing people can do to help carers this carers week and beyond

This year, the theme of Carers Week is “Make Caring Visible and Valued”.  Too many carers remain isolated and feel invisible, yet we know that being registered with a carers’ organisation early on is key in reducing the impact caring can have on your own health and wellbeing.

Everyone can get involved in Carers Week.  Whether it is speaking up and raising awareness of caring, asking your employer to adopt carer friendly employment practices, or making a pledge on the Carers Week website (www.carersweek.org).

With one in ten of us caring for someone at any one time, we all know at least one person who is an unpaid carer.  So one big thing we can all do is to check in that person, let them know that you recognise and value what they do.  Make sure they know about Carers Week, and that there is a local carers’ organisation there for them.  Together, we can make carers feel visible, valued and supported.

Are you looking after someone?

It’s not always easy to recognise yourself as a carer, but if you are looking after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support and you are not paid for doing this – you are a carer. And we can support you.

The Carers Centre for Brighton and Hove; Carers Support West Sussex; and Care for the Carers in East Sussex provide free support to carers registered with them. The teams take the time to understand the needs of an individual carer, and provide the most relevant services for their circumstances – such as contingency planning; emotional support and counselling; carer assessments; support with hospital admission and discharge and more.

What is Carers Week all about?

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid 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.

It is an opportunity to acknowledge the invaluable contribution carers make to families and our local community. It is about raising awareness to make caring more visible and to make those in a caring role feel valued. Our ask to those in the community is to help us raise awareness of family and friend carers, so they can help carers get the practical, financial, and emotional support they need.

This year’s theme is ‘Make caring visible and valued’. The campaign is brought to life by thousands of individuals and organisations who come together to provide support for carers, run activities, highlight the vital role carers play in our communities and drawing attention to just how important caring is.

We all want to acknowledge the efforts carers make and celebrate the valiant work of carers across Sussex.

Find out more, get involved, or get support: