“I would say it's got worse”, says Sharon Tomlin when asked how the support she receives as an unpaid carer has changed over time. Having been caring for various family members for nearly 30 years, she says that as recently as a decade ago there were grants available to help unpaid carers with their work. “It could be up to £800 a year, which was really helpful to unpaid carers. But that's no longer on.”
Having been a long-time unpaid co-carer for both her parents before they died, Sharon now cares for her nephew, who lives with autism. “He is an amazing young man”, says Sharon, who has cared for him since he was a young child. These days she also co-cares for his mum – her sister – who has severe osteoarthritis and other health challenges. Sharon also works in a paid capacity as a community organiser, but says she recently reduced her paid working days to have more time for her caring duties. Having been caring for so long, does she feel that the culture towards unpaid carers has changed?
“Some of the policies these days may be more empathetic, but in practice there's actually less empathy now. And that’s because systems are overloaded in every way possible.”
It is a frustration that spills into Sharon’s frequent interactions with the NHS. “There is far less patience these days, and far fewer staff”. A decade ago, she says that when the person she cared for was hospitalised, there would be more nurses and volunteers available. “But it’s got far worse, which is why we worry about any of us being admitted to hospital. Simple things like making sure the person you’re with is fed, or taken to the toilet, or their clothes taken away. I can't tell you the amount of times when we were in hospital with mum and we just relied on each other to deliver that personal care. In earlier years, mum would get help on that and she would recognise certain members of staff, but towards the end it was us who did it all the time. The NHS is just so stretched these days.”
“Ten years ago there just wasn’t that culture of ‘don't approach a nurse’. Now I always feel guilty about approaching them, even if I have to. But woe betide if you as an unpaid carer have an off day and become stroppy yourself, so I go over the top in being polite and end up doing more of those things myself.”
She finds in particular that her nephew suffers as a consequence of such impatience – “people just don’t want to understand what life is like in that space for a person living with autism”. She also questions whether the money allocated for care, or for the conditions their dependant may suffer from, always goes to the right place. “My nephew has a work coach. I know they say there’s been more money, but they should be investing in better quality coaches. My sister has to communicate with my nephew's coach. He gets frustrated and he just won’t speak to them. Because the truth is they don't listen and don’t understand his context. And as soon as that happens, he won’t engage.”
Sharon, who has a medical microbiology background and in the past has worked with adults with learning disabilities, says she saw the roots of what felt as a change for the worse in unpaid care before 2007 when she worked as a paid administrator for a centre supporting young carers and adult carers. “I went into that job because we were caring already. I thought it would be great to work with a caring organisation that supported unpaid carers.”
Alongside her caring work and paid community role (which she’s been doing for nine years for a voluntary community sector organisation), Sharon “wears multiple hats” as a mother, a family historian and genealogist. “I do like to do many things and it doesn't faze me. I’m having to balance budgets but it’s really all about the community for me – that is always the thread. If someone feels disempowered and disengaged, let's see what we can build and empower people together.”
So what is the main thing as an unpaid carer that would she like to see changed? “Many things”, she argues, but more coordination and clarity on what’s available for unpaid carers would be at the top of the list. “It would be nice for people to see the choice and assets that are available for unpaid carers, but this is really patchy. There should be a generic body of information right throughout the country for each borough.”
She recalls her own personal example of being a mature student at university a few years ago. “If you needed to extend a deadline due to extenuating circumstances, that system did not recognise the role of unpaid carers. Your work would be marked as late and you would be penalised. That's the coordination I'm talking about. Political and educational systems need to find a way to recognise unpaid carers – because being an unpaid carer will impact on how you can deliver things in a way that people don’t hear about.”
Things can take their toll, she says. “As my line manager said the other day, ‘Sharon you work 24/7, even on your days off’. I do wish I had more quality time with my sister and my nephew and my son. Caring has taught me the importance of self-care and I’m trying to do as much of that as I can.”
But despite her frustrations, Sharon is adamant that she’s optimistic about the future. “Working with the community in a meaningful way – that needs to be done. I couldn't believe it when somebody told me that I’m very important in the community. He said to me that my email address is really important to have. I was so surprised!”
“The other reason why I feel optimistic is because the climate feels ready for discourse and dialogue, not only around social care, but on things which are cultural and meaningful for people. In everything I do, I always look for things where we have more in common than what separates us. I'm hopeful about identifying those things – either through dialogue or through policy. And being part of the voice that escalates it at that level.”
*Sharon Tomlin is a community organiser, family historian, genealogist, and carer.