Debbie Hustings works full time as the NHS England London region Carers Lead, whilst caring for family members with additional support needs. As a proud parent carer of an adult child living with autism, this is a lifelong commitment.
I started my caring journey back in the mid 80’s and I often look back on how ill prepared I was at the time. No one really knew what being an unpaid carer was and frankly, I was no exception to this. My days involved being called out at night to help de-escalate a crisis, deal with the police, pacify angry neighbours or to simply sit outside a psychiatric secure unit while awaiting admission. As a recent newly wed with a young family to support, I remember feeling close to despair and terribly alone on many occasions. From watching interest rates spiral in the early 90s to facing redundancies and negative equity in 2008, looking back not everything felt more affordable 35 years ago. Today, I’m feeling rather nostalgic for my old grocery and fuel bills, as I wonder how we survived with only £20 a week for our living costs? But survive we did.
Fast forward 35 years and I’ve witnessed huge social change in both carer awareness and carers rights. In comparison to the difficult experience of my father’s death in the 90s, I had far more support in providing end of life care to my mother during lockdown last year. This time around we were able to ensure that mum had a good death. Today, there are carer support services available up and down the country, and NHS staff are far better informed about carers and the need to involve us in care planning.
In addition, organisations such as Carers UK and Carers Trust have been at the heart of campaigns that aim to raise awareness and improve the rights of carers, including new employment rights for unpaid carers. During my career, I’ve been able to exercise these employment rights by flexing my working hours up and down to accommodate my caring role. It also helps that I can now work from home and be on hand to provide care, instead of relying on paid care workers.
Being an unpaid carer has always brought about additional costs and the most recent cost-of-living crisis will hit unpaid carers hard. Estimates show that 1.2 million unpaid carers in the UK are now living in poverty and 1 in 6 unpaid carers are in debt because of their caring role and financial situation.
There is no doubt that being an unpaid carer has impacted on my financial situation, but I wouldn’t want any other carer reading this blog to think that their situation is hopeless. Carer support services are geared up to provide welfare checks, advice and support. I would urge all my fellow carers who are struggling to seek the support they need. No carer need care alone.
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