Thank you Jimmy McGovern, co-writer Gillian Juckes, LA Productions UK and the whole cast for your well observed drama, BBC1’s Care. This programme and its scheduling is really important. Telly rarely dwells on a carer’s perspective, especially on BBC1 prime time. I watched Care on Sunday night and discussed it with other carers yesterday afternoon in our Carers Bucks funded ‘Christmas afternoon tea’*. Read on for what carers thought about this drama…
Carers in numbers
First up, let’s get our heads around the boggling facts. There are 6.5 million carers (that we know about) in the UK. One in five 50-64 year olds are carers. 60% are women. Only 7% manage to hold down full time jobs and juggle care.
These carers save the UK economy £132 billion every year. That’s the total annual bill for the NHS**. It’s worth digesting that info for a moment.
Carers on BBC1 ‘Care‘
I spoke to six other carers yesterday. Half of us had seen it and the rest were wondering whether it would be too upsetting to watch.
You can ‘watch again’ here until Tuesday 8 Jan 2019 10.30pm.
Those carers who did watch loved the performances. Alison (Mum, Mary), Sheridan and Sinead (Mary’s daughter’s) were awesome, as were the supporting actors. OK, there was a little ‘care-splaining’ but from our perspective, so what? How else can you attempt to convey some of carers’ experiences in 90 minutes?
I’ve read that Alison Steadman deliberately didn’t rehearse with the rest of the cast. You can tell in a good way. When Mary spies Jenny’s necklace in the hospital and starts to eat it, or when she goes in for a frustrated slap, Jenny’s reactions feel heart wrenchingly authentic. So is the lost look that Alison conjures behind Mary’s eyes.
Content-wise we felt it was a pretty balanced summary of health and social care support today, as perceived by the ‘end users’ who advocate on behalf of their elders. A postcode lottery creaking from ‘the system’ of targets, efficiency measures, ad hoc investment and cuts in resources on top of a structure that originated in the 1940s. Our population age and health profile has changed so much since.
I’m all for targets and efficiency measures but we do seem to be at the end of what is possible from years of tweaking. We’re on track to a service staffed by well meaning yet increasingly demoralised professionals. This means despite their calling, to us professionals can often feel patronising, antagonising at worst. Having said that, I’ve not come across a social worker who would describe anyone as ‘demented’. And I’ve a total girl crush on all Marj’s Occupational Therapists who have been incredibly supportive.
The fictional ‘Belle Vista’ Nursing home is shown understaffed and underfunded, as so many are. ‘Everyone knows this’ says the home’s care worker, ‘better substandard care than none at all… we battle on’. Belle Vista actually seemed quite swish compared to some I’ve visited, so it would be easy to believe there is some truth in this. All carers could share stories, good and bad, of homes they have experienced.
We loved the time given to the ‘real life’ around Jenny. The challenges from a thoughtless ex, from nurturing children and finding vital ‘me-time’ (go Jenny 😉 came through. Daily micro hassles were lightly signposted by Jenny’s flipping out. She’ll not be the last carer driven to down half a bottle of wine either. Good metaphors for how carers can neglect their own wellbeing and become overwhelmed if unsupported.
Broadcasting the support already available
Easing pressure on the NHS and care services will take joined up thinking. We’re overdue for transformational change. Many in the care sector are looking forward to the long promised Green Paper on adult social care.
For local authorities, supporting an elder at home is 25% of the cost of ‘putting them in residential care’. We need to bring carers out of the shadows, encourage and appreciate them. While we wait for changes, let’s be more explicit about the support already available to carers and their elders. When you’re new into caring, its easy to feel all at sea because so little is written or talked about caring in the mainstream.
Care revealed the routine concealment of Continuous Healthcare from people with cognitive brain impairment. If we develop cancer, cardiovascular disease or other long term health conditions we benefit from free health care. If we develop dementia we don’t. We need to level the playing field, even if that means changes to the social contract, ie. ‘retirement’ age and how we are taxed***.
Employers can help
In Care, before her stroke, Grandma Mary had looked after the kids while Mum Jenny was at work. While struggling to juggle work, childcare and Mary’s care, Jenny is sacked. By contrast Claire (Jenny’s sister who lives at a distance) is offered compassionate leave by her boss (yaye). Claire, perhaps due to the all-to-common fear of seeming less committed to her job, turns down the offer (nooo!). We’ve all done it though. Putting on the face of ‘everything’s ok’ when actually some things are falling apart and we just need a little breathing space to find our balance again. Screwed up isn’t it?
Flexible working hours would help more carers (and able elders) stay in work longer. Many employers who are actually able to implement flexible working are struggling to realise this. Measuring an employee’s contribution by their output and value delivered is far more productive than focusing on clocking in and out time. So called ‘presentee-ism’. Just because someone’s actually in the workplace doesn’t always mean they are doing something productive. It just takes a shift in how we target and reward employees.
Small adjustments to the working day would mean carers are capable of delivering at least what’s expected of them. Transparent and reasonable policies that help employees transition into a carer role, in the same way as parenthood, would reduce fear of reprisal or potential resentment from team mates.
Families can help
Tension and resentment can easily fester between family members. One may have taken the primary responsibility for care and feel terribly unsupported. Other family member/s may not understand why a residential home wasn’t the first choice. Nor do they experience the sometimes grinding 24×7 responsibility of managing care. Well intentioned questions can easily be taken the wrong way, especially if that family member isn’t around much to help. Lots of guilt all round so we need to tread softly with each other.
We can help the carers in our families by giving them a little of our time. Time to talk about how they are feeling and what they need. All carers would love an hour or more to take a break, a day or (luxury) a weekend off. Even a thank you text or card is a thoughtful way of saying you are thinking of them and appreciating what they do.
A happy ending?
Care ended on relatively upbeat note, which helped the carers who watched. How will we we make a happy ending for everyone?
Change starts by doing something different. As individuals we can support our elders and their family carers with positive language or direct help. We can also make an impact through national advocates like Carers UK, Alzheimer’s Society and the Care Quality Commission. If we work in the health and social care sector or with policy makers, even better. We can start making change today. It boils down to what kind of society we want to live in when we are older.
Thank you BBC1 for airing this drama. It’s probably not a ratings winner because it’s not a sexy subject matter, but you made carers feel heard. I dialled the BBC1 action line. It offers details of organisations that can help if you 1) are affected by dementia 2) need help for/as a carer 3) have been affected by stroke.
* It’s OK, we didn’t get carried away, our allowance was £5 per head 🙂
** Data from Age UK and Carers UK 2017
*** Further reading: ‘The 100-Year Life: Living and Working in an Age of Longevity‘ by Lynda Gratton and Andrew Scott.