'We're only human. Legal support to help enforce your rights under The Care Act.'

You're not alone. Local authorities must provide support.

Dear Reader, Thanks for being here. I appreciate all of you, your comments, and your support of each other and me!

If you’re new to Carer Mentor, ‘Howdy and Hugs (if you’re ok with hugs)!’ I’m Victoria. I cared for my Dad through to his passing (the hellish dark days with grains of joy), and now I look after Mum (calmer waters with giggles). In addition, I have two businesses that keep my brain cells dancing. You can read more about why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?’

The bottom line is that I advocate and support caregivers, raising awareness of what we do. By networking empathy and inspiration, we build our community and illuminate the breadth and amplitude of the social challenges we all face but think we must do alone. We’re not alone.

Heartfelt empathy for Caregivers. A hub of practical tools, resources, and expert insights. A portal of hope

Hands clasped together in support. An emblematic image of other hands encircling them in unity. Words’You’re not alone’ curved at the top

Dear Ones, I won’t lie—this week has been tiring for us. One appointment a day each morning may not seem like a lot to some, but we know differently, right?

Disrupted sleep and routine, waiting 2 hours for a less than 5-minute check to re-sign some patient consent forms. We have rolled along the everyday rocks with grated fatigue, so now we’re a bit raw.

The short of the very long story. Sequential logic dictated we remain in the appointment queue. Regardless of the fact, Mum had done all the tests, and we ‘just needed’ to sign forms again. So, a few minutes turned into nearly two hours and a few sorries. The procession line rolled without a system pause or big picture check, no one had complete oversight or leadership. Each person was doing their part. Sound familiar?

The extra rub? I’d done my usual (‘Hospitals: a Carers Mantra. Why?’) primed with papers, voiced and explained, plus we even had a nurse we knew trying to push things along.

I was just a little frustrated (understatement). However, I hadn’t planned anything else that day. Everyone was polite, asking if we wanted a drink, and we were comfortable. There were even free biscuits and water if we wanted them. This was part of a new building and eye service commissioned by the NHS. So, our in-the-moment decision was not to push more… we were just one person away from getting seen.

I need to underscore something I omitted in my previous article. We can have a mantra, be as primed as possible and even have vocal advocacy support in place, AND STILL, we may wait two hours or have other issues.

Our experiences are tiring—they just are. We have to decide when to push harder and when to conserve our energy. It’s a choice and instinct we hone.

There are no comparisons of ‘I shouldn’t feel this, compared to this other person, or this other thing that’s happening in the world’ (remember, ‘should’ is a swear word in my book). No Guilt-ridden thoughts of ‘I could’ve done more’, ‘done this’ or ‘done that’. We don’t like people ‘caresplaining’ what we ‘should’ do/have done, so let’s not get stuck in our own trap of rehashing what could’ve/would’ve/should’ve happened.

We are all doing the best we can in specific circumstances, including all the people in this healthcare system. Caregiving is about making choices and decisions and being agile all the time!

The toughest, most stressful moments are standing strong in a crisis, directing, correcting, and pushing. My advice is to conserve energy for those moments. Even better, if you anticipate this need, take another person as an additional advocate.

Love sets a very high standard when it comes to caregiving. Let’s give ourselves the grace to be human and the reassurance that we can’t do caring wrong if love is at the heart of our choices.

We learn, we try, we are human. I count my blessings that I can do what I do out of choice and love and that we have doctors vigilantly monitoring and coordinating with us.

BUT Everyone’s circumstances are different, many DO NOT feel they have a choice.

You are NOT alone; we’re perfectly imperfect and trying our best with systems that are far from perfect! We need support and community to navigate through it all.

Phew, drop the mic; I needed to say all that!

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For Carers in the UK

I’m copying this information from the Access to Social Care website because this information is not common knowledge.

Caregiving IS A CHOICE in the UK; you are not liable, nor do you have a legal duty to be a carer. These are tough choices and decisions to go through.

Please be aware that it is a fundamental right to access social care, but due to the ‘rolling back’ of funding and resources, it’s become increasingly difficult to a) gain access to and b) pay for this care.

Please listen to this and prime yourselves with information.

The transcript of the video (Duration 5 minutes 40 seconds)

I'm Susan Bowe, and this is Jonathan, my son. He's 31 years old, 32 next year. He was born with cerebral palsy and severe learning difficulties. My husband and I were joint carers. My husband became ill suddenly. Long story short, he came home in September last year, for two months and died in November.

I was left on my own looking after Jonathan. My son Matthew is brilliant and a wonderful support, but it was hard on him and me, and we had to have carers.

We had a dreadful job getting care, and social services were not helpful. I couldn't do it without carers and no help because they're actually taking the place of my husband because we did it together.

(Matthew) There were three care agencies that were sent to us. All three of them - the biggest issue was that they don't start before seven o'clock in the morning, and eventually social services got to the point of ‘well we've tried everything we can but we can't find anyone so you need to go and find your own carers’

I was aware that Mencap ran a legal advice line and I rang them and explained the situation and then they said well we've got someone who can help you fight to get the support that you need.

One of the first things he said is well do you actually want to hire your own carers and go for all of that process and I said to him well no not really we've got so much else going on still with Dad’s things and everything that's the last thing that we want but that's what the council have told us to do.

He said ‘yeah they can't do that. It is their obligation to provide care and find a way of doing that.’

Kari Gerstheimer (CEO Access for Care, Director Legal Network when it was with Mencap) Social Care really came into being after the world wars, and the government recognised that there was a need to look after people within their communities who had come back from fighting in the war or who had been injured at home in the war.

So, initially, it started off as being a power for local authorities to assess people and provide support in the community. Then in the 1970s, that power became a duty.

What's happened in the last ten years because of austerity is really a rowing back on access to social care.

Local authorities have experienced a more than 50% cut to their funding and what that means in real terms of course, if anybody had their income cut by 50%, they'd struggle to pay the bills and it's the same for local authorities.

(Victoria Butler-Cole QC) So the legal network does three things:

Firstly, we see care workers as being our boots on the ground so if we can encourage care workers (and carers) to pick up the phone and speak to our legal team about an issue then we know that we can help people.

The second thing that we do is provide high-volume early legal help, so we help as many people as we can to access legal advice and legal support.

The third thing we're doing is well finally we recognise that we're never going to solve the problems with access to justice and access to social care through the provision of casework alone. So we're capturing data about patterns of unlawful behaviour and we're using that data to influence systems change.

So the legal network is really important because there's a huge range of problems that can crop up and some of them will have really simple solutions, if you know what the law is, if you know what the guidance is, and if you know what the judges have said.

Marrying up that sort of expertise which is all there with lawyers who have, and the right person knows the answer, marrying that up with people on the ground who are trying to do their jobs, or get the right outcomes for people, is so important.

(Kari) Since 2010 there's been an 84 percent cut to legal help which is the type of legal aid that is really used to fund the cases that we work on. Local authorities unfortunately can act with impunity unless people can access a lawyer.

Without access to justice, rights might as well not exist.

(Mathew) People don't necessarily know what they're entitled to, so you've got to have support and access to something or some sort of network that is going to just look after you and make sure that what's happening is in your interests.

(Kari) We know that everyday people are being denied the social care that they have a right to.

Through the legal network we know that together with our teams of lawyers and with the managers working on the front line who have contact with families and individuals who are experiencing unlawful decision-making and unlawful delays.

We knww that we could make a difference. Together we know that we can make sure that people's rights are enforced.

Find out more here:

Without access to justice, rights don’t exist.

Access Social Care helps to ensure that those in need have access to the care that they deserve. Watch our story , find out what people are saying about us and the impact we have had.

Two Routes to contact them

Telephone advice line

This advice chatbot routes you to advice, videos, template emails/letters This is a collaboration between the charity Access Social Care and Carers UK.

Don’t forget The Carers UK Helpline.

Reference:

The Carers UK explanation of the Care Act

What Rights do Carers have?

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A few reminders:

The Caregivers’ Library contains articles by myself and other authors, curated into four main sections. You can access this from the desktop homepage of Carer Mentor or by bookmarking the Library link. Explore all the resource articles by subject.

These are the sections:

1. The Resonance, Resources curated for caregivers

2. The Cape Dispelling the myth that caregivers are superhuman

3. The Carer Mentor Journey Victoria’s journey

4. Mentoring: A Portal to Experts through a Caregiver’s Lens Research-based insights to inform your way forward.

Other resources hyperlinked on the homepage:

• Grief Articles and Resources

• Book Tools for a Carers Journey

• Back office operations - articles for writers starting their journey on the Substack platform, seeking tips on what’s worked for others.

This week’s article sharing ‘One Resource, Two Insights and Three Ideas/Tips’ is live.

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In other news:

Our local hospital has been reported to have COVID in five wards. Visitors are still allowed, and the hospital (only) urges people to wear masks and use hand sanitiser.

Another hospital in the South of England has stopped people from visiting because of COVID.

So far, there have been four cases of COVID among my friends locally. Please take extra care for the sake of vulnerable people you come into contact with.

There is a definite rise in COVID cases as holidays and crowd events increase…something to remember—superspreader events are still here. ‘What constitutes a superspreader event’ by the Cleveland Clinic (February 5, 2024)

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