"Carers support group stopped me going under"

A woman who cares full-time for her husband and son says she would have “gone under” without the help of support groups run by Carers Support West Sussex.

Claudieon Roberts, known to friends as Claud, became a carer for her husband six years ago after he sustained an accident whilst working at Gatwick Airport.

The accident left Anthony, 52, with a traumatic brain injury and Functional Neurological Disorder – a medical condition that causes problems with the nervous system – and affected his cognitive skills processing.

At the time, Claud was employed full-time as an IT technician in the City of London. But, just before the pandemic, spine surgery forced her to take time off work. When her employer refused to let her return to work with hours that would fit into her caring role, she had to give up paid employment and became her husband’s full-time carer.

Her tasks range from ensuring he has something to eat, basic personal care, sorting out his medication, completing all the household admin and attending medical appointments with him because he isn’t always able to remember things or articulate himself.

She explained: “I take him to appointments and run the household because his processing of information is a challenge. You can speak to him and he seems quite together but it does take him a long time to actually grasp things. So, at times, I have to be his brain, and generally keep things running day to day in our home.”

Alongside the impact on her professional life, the family’s change in circumstances has also affected their social life, and there has been a huge knock-on effect for their finances.

As well as looking after her husband, Claud is also a carer for her 26-year-old son who had a breakdown after completing his Masters degree at university and suffered psychosis. She regularly has to help him with administrative tasks and physical check-ins as he lives alone, supporting him during his most challenging days. “It can be pretty tough,” Claud admitted.

How Carers Support West Sussex made a difference

Anthony gets support from Headway in East Sussex, a charity supporting people with brain injuries. But Claud found her own source of support at Carers Support West Sussex, helping her navigate her way through the complexities of being a full-time carer.

She said: “With Anthony we were quite fortunate, with getting him into Headway using a personal health budget and his progress has been amazing. But if I didn’t have Carers Support West Sussex I think I’d have gone under. They were really there for me in ways that I didn’t expect from a charity, like providing me with a sum of money from the Carers Fund towards the purchase a laptop so I can indulge in my love of writing, as my respite.”

Claud attends an in-person carers group which greatly helps with challenges she faces caring for her husband. She also has an online mental health carers group which helps enormously with the intricate challenges faced by parents and partners of the cared for. 

She said “I met a lot of incredible, intelligent people who were facing situations similar to mine. Though we all have challenging lives, it was uplifting to hear their accounts and the small victories achieved in their caring role which makes all the difference to your mood and gives you that push to keep going.  The group facilitators were observant yet affable, and have a wealth of knowledge of, not only signposting, but making referrals to relevant services in the community, which delivered and ensured carers wellbeing.” 

Claud said she would encourage carers from diverse backgrounds to reach out to their local services and join a carers group. She said the help she received was invaluable, especially as she found her own network of friends did not know how to get support.  She explained: “Your network remember you as a city worker who is living life in the fast lane like them, and then your caring role puts the brakes on the speed of that life, and it’s hard for people to find an affinity with you, which could lead to loneliness.”

“Some carers from diverse backgrounds don’t know where to turn”

Carers Support West Sussex is part of the Sussex Carers Partnership, a collective of three organisations who are offering support to carers from minoritised ethnically diverse communities in the county. That support has been made possible through Making Carers Count, a programme led by charity Carers Trust with its network of carer organisations aiming to identify and support carers who are under-represented among the community groups they currently reach.  

It is estimated there are around half a million unpaid carers from ethnically diverse communities in the UK, but this isn’t reflected in the numbers who seek support. Recent research by Carers Trust shows just 16% of those from ethnically diverse backgrounds said they had been signposted to support by their local authority, compared to 31% of white carers.

Adeelah Khan, Carer Engagement Coordinator at Carers Support West Sussex, explained: “Unpaid carers are confronted with a myriad of responsibilities, often with little to no time for themselves. The strain they endure is not limited to their caring situation, as they also grapple with the scarcity of suitable respite options. This situation becomes even more complex for carers with culturally specific needs, who find it difficult to find services that reflect their cultural and even spiritual needs, not to mention those of the person being supported.

"Family dynamics, intergenerational responsibilities, and expectations about seeking professional healthcare services or social support are all influenced by cultural norms. This can therefore lead to preferences for familial carers over professional care services, reliance on alternative remedies or treatments, and respect for elderly authority within the household before seeking any outside support. Communication barriers due to limited English proficiency can further complicate care decisions, as access to mainstream healthcare and support services may be hindered. Such things can therefore make it hard for some unpaid carers to know where to turn to or how to ask help when needed.

"Through the Making Carers Count project, we have undertaken a transformative journey to not only grasp but actively address the preferences of our local diverse carer communities across Sussex.”

So far through the project, 500 carers have been given one-on-one support, helping them to navigate local services and ensuring they can access much-needed support. Some carers have also received tailored counselling to enhance their wellbeing, while 15 events have been held to connect people with others in similar circumstances. The project has even co-designed with carers a free online carer awareness training course aimed at professionals to help them understand the cultural values and preferences for ethnically and/or culturally diverse carers.

Adeelah said: “By combining our expertise and insights as the Sussex Carers Partnership, we can tap into a wealth of knowledge and experience that leads to positive outcomes for unpaid carers and enables us to expand our reach, effectively connecting carers to a range of support options to suit their needs. Together, we can amplify our impact and extend our support to those who need it most.”