Unpaid carers from Honiton are sharing their experiences with the NHS as part of an initiative to reduce the enormous difficulties suffered by people in their position.

People looking after a loved one in the last years of their life have opened up about the stress and worry they suffer. They highlighted the lack of support and advice available, the financial pressures, and the complicated systems and red tape involved in getting the necessary medical treatments and equipment for the person they care for.

Their experiences and views have been submitted anonymously to a regional NHS team working on a national review and update of the health service's approach to 'end of life' care.

And the chair of the Honiton Carers Support Group, Winnie Cameron, was among five 'Carer Ambassadors' from Devon who attended an online meeting of the regional NHS team at the end of last month.

How did Honiton Carers get involved in this?

A spokesperson for Devon Carers said: "The NHS reached out to us to hear our stories and to ask the simple question: 'What would make a difference?'

"This openness and shared understanding of the practical difficulties and mental strains which many carers face - particularly during the pandemic -is the start of being able to address some of those issues."

Winnie Cameron contacted all the members of the Honiton Carers Support Group, and received a wealth of feedback.

What one of the unpaid carers said

One woman, who is caring for her mother despite having disabilities herself, described the 'great responsibility' of the role, and her worry that both she and her mother would be 'cast adrift' if she – the carer – found herself unable to continue doing it. She said: "I am doing a nursing role without any training or a back-up team of professionals …. I am making decisions I think are right but if I get it wrong I will feel dreadful and guilty."

She said that while the role of each carer is completely different, depending on their loved one's needs, it would help to have specially trained support teams in each area of the county. They would be able to help with medical and wellbeing issues, advise on financial matters, assist with the notorious 'red tape' and signpost carers to other sources of support.

She said carers also needed a fairer allowance and properly funded breaks.

She added: "To be blunt there needs to be a professional spokesperson who has had direct caring experience, someone society would trust and listen to."

What changes could result from this?

The views of the Honiton Carers, and others from across Devon, will be considered by the NHS and Devon County Council, who jointly commission the services provided by Devon Carers. This organisation supports more than 22,000 unpaid carers – and that number doesn't include those in the Torbay and Plymouth local authority areas.

It's not clear, at this early stage, what actions could or might be taken by the NHS team as a result of the 'end of life care' review. But at least the initiative has been giving local carers something they often feel deprived of – a voice.

[i]Anyone who is a carer, or thinks they may be, can find a lot of a information on the Devon Carers website. In addition, the Carers Passport will enable them to access further support and advice.[i].