Unpaid carer of 40 years left feeling more support will only be available when she dies

Sylvia Penny has an unbreakable bond with her children.

Widowed when they were young, she has dedicated more than 40 years of her life to their ongoing care needs.

She provides round-the-clock care for her daughter Michelle, who is 95% bedbound with ME, or chronic fatigue syndrome, and her severely autistic son David.

Sylvia believes there are a lot of misconceptions about the jobs which unpaid carers do on a day-to-day basis.

She said: "[The public] has the perception that a carer sits down and has a cup of tea and a piece of cake with somebody. They think that's all you do.

"They don't realise you're responsible for somebody's medicine, their health and well-being, their finances and their happiness - everything.

"It's like looking after a newborn baby, it's that type of responsibility but I don't think the general public know that or understand it.

"Things are a little bit better but it's very difficult."

It comes as unpaid carers are found to suffer poorer physical and mental health than non-carers and use healthcare services more than the rest of the population, according to a new report from the Wales Networked Data Laboratory (NDL).

The last census in 2021 found there are more than 300,000 people in Wales with an unpaid caring responsibility.

NDL Wales, a partnership between Public Health Wales, Social Care Wales, Digital Health and Care Wales and Swansea University, says it is vital that unpaid carers are able to access support and advice, both for their own health and wellbeing and those they care for.

One charity advocating for unpaid carers which launched this year is calling for local authorities across Wales to take a preventative stance to supporting unpaid carers rather than reacting when it's too late, leading to increased pressure on the system.

Dinas Powys resident Sylvia is worried about what getting older will mean for her children's care.

She says when she asked for more support from social services earlier this year, she was asked to come up with an emergency care plan - for when she dies.

Sylvia says that makes her feel "unwanted", saying: "How would you feel if that was said to you?

"I know things are hard. I know there's no money around, but that's not my fault. I've been caring for over 40 years."

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Asked how she would want her local authority - Vale of Glamorgan - to help her so she can continue carrying out her caring responsibilities, Sylvia said: "It would be nice if I could have a life where one day a week I could meet friends, go to the museum, go to a gallery, to do the things that I like to do without having to consider someone else's needs first.

"But I don't think there's any prospect of that in the near future because finances are so stretched, and there are people worse off than me."

In response to Sylvia's story, a spokesperson for the Vale of Glamorgan Council said: "Unpaid carers play a vital role in supporting their loved ones and enabling them to remain in their homes.

"Where an individual consents, we undertake a carers assessment to understand their circumstances and provide information and support to assist them in their caring role. We would encourage anyone in the Vale with caring responsibilities to contact us for such an assessment."

The council said they are "very aware" of the physically and emotionally demanding nature of unpaid caring, and appreciate that some carers may sometimes feel they simply do not have time to look after themselves as well.

"In these circumstances the council provides a range of support for unpaid carers, including respite packages where assessed as appropriate," the spokesperson said.

"We have dedicated funding to pay for short-term care and have in the past provided respite care for Sylvia. While we cannot commit to supporting every request we would always encourage carers to speak to us about what is possible to enable them to take a break from their caring responsibilities."

There has long been concern in the sector that if there is insufficient support for those providing care, the impact on them and those they care for could be dramatic.

"If every unpaid carer in Wales decided tomorrow that they could no longer provide care, the health sector would be under immense pressure". Credit: ITV Cymru Wales

Mike O'Brien, an unpaid carer for his parents, recently co-founded the charitable organisation VOICES ADFOCAD alongside Bobbie-Jo Haarhoff.

Mike said: "If every unpaid carer in Wales decided tomorrow that they could no longer provide care then the health and social care sector would be under immense pressure to provide the care that we do.

"We set up the charity to raise the voices of unpaid carers in Wales because quite often they are making complaints to councils or Welsh Government and they're just not being heard, so we set up this organisation so they can be heard in the places they need to be.

"We have Carers Rights Day and we have Carers Week and the powers that be say they're really grateful to unpaid carers, but they need to start showing that. They need to recognise the contribution we make to the state."

Meeting the needs of unpaid carers will get even harder for many, with the charity The Care Collective (TCC) announcing in recent days it is having to permanently close down after more than 30 years supporting unpaid carers across south Wales.

It will also mean all 87 employees will be made redundant.

Karen Robson, who was appointed as chief executive of TCC in June 2023, said: "Unfortunately, unpaid carers have long been under-appreciated and support for them underfunded.

"I see no improvement in this situation when organisations such as ourselves are no longer able to deliver vital services to vulnerable people and their carers".

After the publication of the Wales Networked Data Laboratory (NDL) report in early March, Alisha Davies, head of research and evaluation at Public Health Wales, said: “Understanding the size of the unpaid carer population in Wales, and their needs is essential to inform the support available to this vitally important population in Wales.

"And yet, this is often limited by only having one point of view: for example, from primary care or local government. Here, this new approach has shown the value of bringing anonymous data from all parts of health and care systems together, to provide a more comprehensive understanding of unpaid carers as a group, and to assist agencies to respond to the needs of unpaid carers."

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