Challenging times for disabled people and unpaid carers using direct payments (DPs): One family’s diary

In January 2021 Ben and I wrote a blog about the difficulties we faced in lockdown.

Love, care and common sense got us through the Covid crisis. We were looking forward to better days. We weren’t expecting another crisis so soon! But come 2022, as an older carer, I needed to think about strengthening Ben’s team of personal assistants (PAs). Sadly it was getting harder to recruit new PAs.

April 2022 Dear Diary

A new social worker came today – first for three years – to review Ben’s support and direct payments.

July 2022 Dear Diary

The social worker came again with her report but no sign of a review of direct payments which we desperately need as they have not increased in five years. Says she’s leaving at the end of the week. Someone will be in touch.

October 2022 Dear Diary

Contacted social services today cos I’ve heard nothing. The team leader arranged for another social worker to visit to review the direct payments. It’s getting much harder to find skilled PAs on the current pay. There are gaps in the rota and I’m having to fill them despite my poor health.

January 2023 Dear Diary

As the new social worker suggested, I sent a detailed request to review the PAs’ hourly rates to social services today.
Saw my GP today – I’m stressed out, not sleeping and my mental health is deteriorating. Thank goodness for a listening and empathic doctor. She knows the score – she’s a parent too.

March 2023 Dear Diary

No response to my January request as yet. Phoned to enquire what’s happening; the social worker is on long term sick. Nobody told me.

Yet another social worker phoned today and arranged to visit.

But I’m so chuffed to see Ben celebrating 15 years of having an ordinary life not a service and to see him so happy in his own home. Downside is it’s taking its toll on me. Perhaps social services will ask us why Ben’s support works so well or how we train his PAs or maybe use Ben’s situation as an example of good practice…? Or even ask about the impact on my life? It’s not happened in 15 years so I’m not holding my breath…!

March 2023 Dear Diary

Had a carer’s assessment today and told them yet again I just can’t carry on filling in gaps in the rota – which bit don’t they understand? Told them what I need is for them to provide realistic hourly PA rates. Nothing more, nothing less!

June 2023 Dear Diary

Went along to a social services meeting they had called to ask direct payments holders to help them review their policy! Pity they didn’t take any notice of my comments the last time they reviewed the policy four years ago…

The Director told us that more people are stopping using direct payments than are starting. I’m not surprised – there’s a worrying disconnect nowadays between independent living and direct payments and the system that’s supposed to support people with them.

September 2023 Dear Diary

Still having difficulty finding new PAs. Waiting nine months and counting for a response to our request and still a wall of silence from social services. Note to self to make an appointment with a community law solicitor to talk about Care Act 2014 responsibilities.

Loving that Ben had a great day out with his PA newly back from long term sick leave. Such a brilliant team of PAs. But the costs to me and Ben’s family of plugging the gaps are ongoing, hidden and nobody chooses to look or ask. So stressful – and I wish I had more time to spend with my grandchildren.

October 2023 Dear Me! Who cares?

Still waiting – why? I’m exhausted by the lack of compassion and empathy from the council ‘support’ system that’s supposed to enable disabled people and unpaid carers to have choice and control over their lives.

Emailed Think Local Act Personal about ‘Get up, stand up, stand up for your right: why we need concerted action to improve direct payments’

Affirming to know we’re not alone.

But it doesn’t stop there… social care has to change – we have to have a more creative, respectful approach that stems from humanity and humility. It has to recognise that we all want to live in a place we call home, with the people and things that we love, in communities where we look out for one another.

And our elected representatives have responsibilities. We need to make social care a doorstep issue so that the people our elected representatives are there to serve are at the heart of social care policies.

Those of us who use social care and those who love and support us must voice our views too Future of Care – Hell or Hope in a Handcart?

Today Dear Diary

Popped to see Ben on my way home today – a perfect antidote to all the hassle. He and his PA were picking apples and sowing wildflower seeds. His garden offers welcome calm and sanctuary for him and everyone who visits.
Still waiting, sometimes weeping, still not sleeping, running on empty but…

Staying strong…

Anna, October 2023

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