Tag: Activism

Care fully considered

Jul 5th, 2024

Exciting news, everyone! Katy styles, campaigning powerhouse and founder of the We Care Campaign, and I have launched a podcast! It is called Care fully considered and you can listen to the first episode here. We speak to Patrick Butler, the Guardian’s social policy editor, about the carers allowance scandal and how his work on this story has made him think differently about caring and what being an unpaid carer is like.

Grandma’s verdict on the first episode was: ‘not bad, but it won’t make a blind bit of difference.‘ Her withering assessment wasn’t a surprise but she doesn’t know what a podcast is so I don’t take her opinion to heart. She is also wrong. We can never do, or talk, too much about caring. We need to keep sharing our stories, repeat our message at every opportunity, and show we exist. We need to make noise, take up space, and demand a seat at the table.

Our conversation with Patrick is interesting, I promise, and you don’t need to be a carer to listen and relate to our discussion. That’s the point. We want to widen out the conversation to include everyone (who are all soon-to-be-carers) in an accessible way so listeners can gain awareness of the issues we face, understand they will likely become one of us, and get them to act to change things. We aim to speak to as broad a range of guests as possible, and keep the tone light (I’ll keep the misery for the blogs…).

Through this podcast, I’m also excited to learn new things and meet great people. Neither Katy or I really have the time to do this, but we make it happen because this feels important, plus everyone needs a break from their true crime favourites now and then.

You might think doing a blog about a podcast is a bit much? NEVER! Give the episode a listen and let me know what you think, send guest suggestions, and share widely please- that’s also activism. Another radical act of activism comes from our producer, Nathan, whose legendary patience I envy, runs Bridgegrowth, a podcast producing agency, who is helping us on his own time. Welcome to the caring community, Nathan, and thank you for helping us be heard (despite my not-so-great audio… will get that fixed, I promise).
Mission improbable

May 6th, 2024

I don’t have time to write this blog. I have to write it over a few days, squeezing in 15 minutes here or there. Why do I bother, you ask? After all, I’m sure you would survive just fine without reading my ramblings.

I find time to write and publish my thoughts as a way of doing something, to raise awareness of unpaid carers. Granted, I do this at my tiny level. Through this blog and other small things I do that I don’t strictly have time to, I have slowly found my mission. Something positive and motivating to focus on. Not to be too Oprah Winfrey about it, but this blog is helping turn my pain, loneliness and frustration into purpose. Channelling those heavy feelings into my mission has helped me in my day-to-day caring role. I find myself to be less short-tempered or being able to find some joy in tiny moments throughout the day- something I thought I’d lost the ability to do.

My mission is simple: to raise awareness of unpaid carers and the issues we face to the general public. My goal is to help create impactful change for us.

Big stuff, innit? It will take a long time. It might not even happen. That doesn’t scare me, I’m very tenacious and this big goal will keep me mentally stimulated to prevent me from completely sinking into my ever-present depression. Action- through this blog, some media work, helping campaigning groups, participating in research projects, or simply taking an interest in the news, feeds my purpose, and in doing so, diminishes my pain.

It is not easy to do. Finding time to do these things, always having to prioritise, and not seeing immediate results from your work can be demotivating or feel that what I’m doing is futile. Maybe it is in some way, but if it keeps me from giving up on life then it is worth it just for that.

I’m also learning a lot on this mission, a lifeline for my creative brain. I used to be able to come up with an idea a minute for a campaign or a work project, I felt that part of my brain atrophy consumed by caring-related anxiety and sadness. I have recently contacted a few campaigning groups with some ideas and have loved re-discovering the feeling of an idea forming and letting it percolate until it pops into my head at unexpected moments.

You are helping too, yes you, dear reader. By taking an interest in the issues I describe, you are inching along with me on my improbable mission. It will be a tough, frustrating and slow ride but a worthwhile one. I’m sure Oprah has a quote on sticking with difficult journeys. I’m too British for that sort of thing so I’ll just get on with my new found mission and say a big THANK YOU for reading.
Open letter to the DWP

Apr 18th, 2024
To everyone at the DWP,

I’m just checking in, it’s been a tough few weeks – how are you all holding up? I bet some of you are working overtime. As a fellow communications professional, I especially feel sorry for the poor PRs having to deal with those pesky journalists asking questions about those tiresome unpaid carers.

What is their problem?! They made mistakes and now they must pay. You are just doing your jobs, right?

Well… the thing is, I don’t think most people see it that way. I realise you have to project a certain toughness, but the words that spring to mind on this are: ‘cruel’ ‘incompetence’ and ‘borderline entrapment’. Not sure that’s a brand image you should be aiming for.

I realise I haven’t introduced myself, I’m Laura, I’m a communications manager and an unpaid carer. Don’t worry, before you fire up your laptops to send me a threatening letter, I earn ‘too much’ to claim the carer’s allowance. In fact, to put it bluntly, my taxes pay for these benefits. I’m fine with that, that’s the deal. What I’m not fine with, is standing by when you’re facing this crisis but fear not! I have compiled a list of actions you could take to resolve matters. You’re welcome:
- Fix your tech. I’m not a techie but there must be a way for your systems to flag overpayments and mistakes so you can resolve them early. Oh wait, you have one of those already? Great! So maybe, next time it happens do something about it? That way, you spot the mistakes early and these unpaid carers don’t get into debt or go to the press, you’ll also save money on legal bills and crisis comms consultants. Incidentally, just putting it out there, you might catch fraudsters earlier too. How’s recovering our £50 million from that crime gang going, by the way? It took you a while to catch them too, I believe. Not hating, just sayin’!
- Change the system. Do you have to be so harsh towards unpaid carers? I mean I get it, they are SO annoying with all the caring for their loved ones, being the scaffolding for the social care system and the NHS while your colleagues over at the DHSC are busy diligently ignoring them. Why can’t they just suffer in silence and live on the £80 a week you so generously give them. Benefit scroungers, the lot of them! It’s not like they were trying to get whatever jobs they could to contribute to the system and make ends meet… Oops! Sorry- that’s actually what they were doing. My bad. Anyway, I just feel for the optics of the situation – not because it is the right thing to do (LOL!)- maybe drop the ‘cliff edge’ policy?
- Simplify the system. All this business is very complicated isn’t it. I realise admin is basically your jobs, and you all must love it. That’s cool, you do you. But us unpaid carers are a tad busy keeping the people we care for alive with no help (long story- you’ll find out all about it one day). Would it be an idea to make things easier to reduce errors in the first place?
- Increase the Carer’s Allowance. This is a bit sensitive for you, I understand, but I have to ask – could you live off £81.90 a week? I’d venture to guess that is probably what you spend on Pret lunches and coffees in a month. I used to spend about that back when I had a life in London, I love that place. I understand we must keep Pret A Manger going at all costs but if the Carer’s Allowance isn’t meant to be a living wage or replace loss of earnings, what is it meant to do? Why give a benefit that has no benefits? One to consider over a flat white.
- Finally, a *tiny* point to the comms team. Please don’t call unpaid carers ‘heroes’. I know it is tempting, but it’ll go to our heads and we’ll start making mad demands like a national strategy for carers. We can’t have that. I’m certainly not a hero, I’m just a normal person trying to do my best. So drop the H word, yeah?
I think that’s enough to be getting on with, I’d send you an invoice for my services but you’re better off saving that money to persecute 92-year-olds with dementia – GO YOU! Fighting the good fight!

Best,

L
A rising tide

Mar 28th, 2024
‘A rising tide lifts all boats.’ I hate that expression. Not because it doesn’t sound true, but because a big boss used it once in a company I used to work for which led to many middle managers parroting it, mostly out of context, for months afterwards; it drove me mad.

Anyway, I digress. This expression is helpful for what I want to talk about today. This week, unpaid carers and the exorbitant cost of care has been in the news, courtesy of ITV’s Kate Garraway’s documentary about caring for her very ill husband. In a heartbreaking display, the documentary shows the toll caring takes, and her fight against the nearly non-existent social care system. Depressingly familiar themes for the millions of unpaid carers across the country.

Before her husband died in January, the cost of her husband’s (private) care came to £16,000 per month. She has been left in debt despite her considerable TV salary. I took a look at the reactions to the documentary on social media, curious to see what the soon-to-be-unpaid-carers thought. I saw a lot of messages of support saying it was ‘heartbreaking’, that we must support these ‘heroes’ and the system needs to be fixed. There were a few trolls too but the less said about them, the better.

I hate to say this, but these well-meaning messages are useless. We know it is heartbreaking. We get it. It is very sad and good on Kate for using her platform for good. But now is the time to act. Tweeting is not going to help fix this. Heartbroken emojis will do nothing. To those nice people who were moved to share their thoughts on social media by that documentary, here are three things you can do to help:
- Do your research. Find out what provisions are available in your local area. Speak to your local council about the social care provisions where you live. When you find out they are probably dreadful, look up local private care companies. How much do they charge? Do they have capacity? How do you get in touch with district nurses? Etc. Make a list and keep it – you *will* need it.
- Save your money. Assume there is no help. While you’re still earning, save what you can every month in a care pot. If someone who earns several hundred thousands pounds a year can’t afford private care, you won’t be able to either but your savings will help bridge the gap while you’re battling the system.
- Help us help you. You are likely to become an unpaid carer. Accept that. I know you might disagree or don’t want to think about it, but it is going to happen. So supporting unpaid carers will help you when you join our ranks. Support charities, sign petitions, get involved with volunteering, email your local MP. Help us make this an electable issue. In short, act. That’s the only way to make a difference.
In this case, supporting unpaid carers helps everyone, this caring tide will lift all boats. More support for unpaid carers means better social care and better healthcare, which means you’ll have help when you need it.

Here are some links to get you started:
If you’re in the UK, you can watch the documentary here: https://www.itv.com/watch/kate-garraway-dereks-story/10a1610

Outside the UK, you can read about it here: https://www.bbc.co.uk/news/entertainment-arts-68656222
Interview with Katy Styles, founder of the We Care Campaign, the Jack Russell of carers organisations

Sep 7th, 2023

As I was on my Saturday morning hike last weekend, I was thinking about what more could be done to help unpaid carers. I had been following a few conversations on that topic on social media and was coming up empty on ways to move the conversation forward. So I thought I’d ask an expert. A few days later, I was on a zoom call with Katy Styles, the founder of the We Care Campaign and all-round campaigning powerhouse. I learnt so much from our discussion, here is some of it… with more to come.

– Tell me about yourself, how would you introduce yourself at a dinner party?

Born into caring, I’ve been a carer since age 5, caring for various family members. But it wasn’t until my husband left work due to MND (Motor Neurone Disease), nine years ago that I officially identified as a carer. Today, I juggle care for my husband, my mum who has had strokes, and my mother-in-law. I’m also a former geography teacher and an iced coffee addict.

– You are the founder of the We Care Campaign- can you tell us more about the organisation?

Five years ago, I founded We Care. Frustrated by the lack of attention unpaid carers received, I started a petition when the UK Government’s National Carers Strategy was brushed aside. It was clear that carers wanted to campaign but lacked guidance and energy. So, We Care was born, starting with a digital community on a laptop on my kitchen table via a Google Hangout call. No Zoom then! We have since grown to thousands of followers across the UK. Because of our size, we can be responsive and deal with tough topics other carer charities shy away from, we’re feisty; like a Jack Russell terrier.

– What are the campaign’s main objectives?

Our mission is crystal clear: amplify carers’ voices to UK decision-makers. As for me, campaigning isn’t as tough as it seems; it’s about building relationships and effective communication. I was told carers wouldn’t want to campaign but I found that is not true, they just need a bit of help and direction. My aim has always been to get more carers to do what I do, even if it is going to see their MP for the first time, that’s a huge win.

– In your experience, what are the biggest issues unpaid carers face?

Carers face pressing challenges today. The cost of living increases, impacting our finances as full-time caregivers. There’s a dire shortage of social care, breaks, and respite. Worst of all, many don’t grasp the vital role we play in society, upholding its very infrastructure.

– How do you get the government to engage with you to create actionable change?

We raise carers’ voices in front of decision-makers, online and in person. We infuse lived experiences into our submissions, putting real stories alongside cold statistics. Petitions drive debates, and we connect carers with media interviews to ensure our issues stay in the spotlight.

Our award-winning film, “The Ones Who Care,” has touched 80,000 hearts, but we need more to see it. Hospitals, carer organisations, councils, and charities use it for training, providing a glimpse into caregivers’ world.

– What is the biggest policy change you would like to see happen?

My dream? A National Carers Strategy that values us. No more postcode lotteries; a unified approach is needed, one that supports carers, addresses finances, and holds someone accountable for our issues. The Care Act needs an overhaul; too few get carers’ assessments.

– Any big events coming up for the We Care Campaign?

In October, we’re bringing carers’ issues to the Senedd (the Welsh Parliament), in a unique way—on dusters. Craftivism unites us; carers stitch their concerns and send them in. This project forms a tight-knit online community, offering companionship to many isolated carers. I can’t wait to see our messages hanging in the Senedd for MSPs (members of the Welsh Parliament) to ponder.

– What would your message be to society at large about unpaid carers?

Carers are society’s backbone, supporting the NHS and Social Care systems. We don’t need applause or empty words; we need tangible actions. The time for recognition is now.

Huge thanks to Katy for her time and wisdom, please visit the We Care Campaign’s website to find out how to support: https://wecarecampaign.org.uk/

Tag: Activism

Care fully considered

Mission improbable

Open letter to the DWP

A rising tide

Interview with Katy Styles, founder of the We Care Campaign, the Jack Russell of carers organisations