Care Now

This July marks ten years since I made a life-changing phone call. It was one I’d put off for months and would be the start of a process that’s happening to this day. On 12th July 2011 I called social services about myself – and it was one of the best decisions I’ve ever made.

That first call wasn’t without its frustrations. Initially the physical disability team didn’t want to assess me and wanted the learning disability team to do it instead, which seemed pointless to me because I’m not learning disabled. Eventually the team manager agreed and sent a social worker to assess me – to give her, her full title – ‘London’s Best Social Worker’.

My memories of that first assessment are positive. It was thorough, clear and left me feeling cared about – this was 2011, before the impact of Austerity had really begun to bite. I’ve had many social care reviews since then, some more difficult than others. The stakes are always incredibly high. With the right support I can live a happy, full, independent life and feel safe most of the time. Without it, everything that makes me ‘me’ is on the line.

This is a post about Social Care, about its importance and its brilliance. It’s also about how social care is discussed, imagined, and tossed about in political power games.

There are lots of articles in the press and online about social care because the Government has promised an ‘imminent announcement’ about reform of the system, though they’ve been saying this every year for almost a decade. These articles are usually illustrated in the same way, with an anonymous elder in a wheelchair, or a close-up of a pair of clasped hands. These images don’t illustrate my experience of social care so I’ve chosen images for this post that better reflect my reality

A close up photograph of a pair of muddy hands, clasped together as a wheelchair user is pulled through the mud at a festival

It matters to me how we talk about this system so that the reality of disabled lives is better understood and so that people know it’s an option for them and can therefore make that crucial call sooner. My care is currently being reviewed and this process is emotionally and physically exhausting.

Touretteshero is at the centre of an image grinning at the camera a team of four friends and personal assistants is gathered around her, all are dressed for a festival and wearing lanyards, tents are visible in the background, gentle sunlight falls across their joyful faces

I’m mostly happy, feel loved, make a positive contribution in my communities, and live in my own castle – but this always feels precarious and never more so than when politicians are making plans about the lives of millions of social care users.

My current social worker is brilliant, I’ve known her for a while, she listens to me, and I trust her. This should be a given, but in a system that’s been cut to shreds by politicians and sustained neglect, good practice is far from guaranteed.

My social care review has been underway for several months. At the moment, all my support at home is funded by my Local Authority. But they think the NHS should be contributing to my care too, so they’ve asked for an NHS Continuing Care assessment. This isn’t the first time this type of assessment has been carried out – a couple of years ago I was found to be ineligible, although the decision was borderline.

Despite everyone’s best efforts, the assessment process can feel pretty brutal. It’s a very in-depth process with requirements assessed across twelve different areas of care.

A colourful digital drawing showing twelve playing card style cards piled on top of each other. They are all different colours and each has a different area of care written on it these are: Skin, cognition, nutrition, communication, continence, emotional, breathing, behaviour, mobility, drugs, altered states of consciousness and other  Weirdly it’s not straightforwardly about assessing whether I need support, or what this support should be. Both the NHS assessor and my social worker agree that I need support and would be at serious risk without it. What this is ultimately about is who should pay for it – social services or health?

It’s simultaneously about me and my support requirements, and not about me at all. It puts me in the weird position of explaining my requirements in detail, and then standing back as the health worker and social worker debate where I come on a scale from low to severe. It’s the closest you can get to knowing what it feels like to be an antique being haggled over on Bargain Hunt.

Claire’s been sitting in on the process with me, taking notes and offering her perspective as someone providing my care day in, day out. Having her support with this process has been invaluable. Because of my pain and energy levels we’ve had to split the questions over three sessions, each lasting a couple of hours, and even then, I’m worn out for the rest of the day.

There are some areas of care I didn’t expect I’d have much to say about, but then, thinking about it, I realised there were some quite significant requirements. For example, skin. During the discussion I realised that the skin on my knees, knuckles and chest is often damaged and worn away by the repetitive movements of my tics. I wear protective clothing and sometimes dressings to protect these areas. I’ve also had several nasty burns, both friction burns sustained during ‘tic attacks’ on carpeted floors and an actual burn from a hot radiator pipe.

Some of the questions were impossible to answer in a straightforward way. For example, “How long does it take to feed yourself? This totally depends on what I’m eating, how my tics are, whether I’m in pain or nauseous, and whether I involuntarily throw the meal on the floor before we begin.

My care is complex, constant, and far from the clinical representations you often see in the media.

Last Friday I picked Bean up from nursery, we played together in the park, I brought her home, gave her dinner and we talked at length about the misdemeanours of an imaginary naughty dinosaur. This allowed Fat Sister and King Russell to celebrate their 10th wedding anniversary together without relentless dino-chat, and I could spend some time catching up with Bean.

A digital drawing of a child wearing a hat eating a sandwich next to an adult, both are sitting crossed legged.

No part of this would have been possible or safe for either of us had Claire not been there to push us in my chair, climb to the top of the slide, make our food, and reassure Bean when I was having a ‘tic attack’. Social care allows me to be an aunty, a sister and a friend. And all this could be taken away from me in a moment.

When politicians talk about Social Care it’s nearly always framed as a problem that needs solving, not as an essential element of a fair society.

I’m writing this to ease the knot I feel in my chest every time MPs promise to set out their plans for Social Care – what will it mean this time? Losing my home? Being warehoused in residential care? Or going back to having to rely on negotiated support from friends and family that puts a strain on our relationships.

I want to live in a society where care isn’t a lottery, and where every disabled person has the right to the kind of independent living that puts their requirements, interests, and ambitions at the centre.

As these issues are discussed and dissected in days, months and years to come, here are some key ways you can support social-care users and their families:

• Pay attention to any developments on social care and recognise that this is an issue that’s relevant to everyone. Be ready to raise concerns about social care policies in your area with your MP

• Follow disabled people and our organisations. For trusted perspectives Baroness Jane Campbell, Inclusion London, Stay Up Late and The Disability News Service are good places to start

• Challenge assumptions about social care wherever you find them, particularly when talking to friends, colleagues, or family members. Reflect on the type of care people require at different stages in their lives

• Support organisations, like The Disability Law Service and Disabled People Against Cuts, that help disabled people take action when they don’t receive the right support or when services are cut

I’ll have to wait (no idea how long) to find out both what the government’s plans are and for the outcome of my most recent assessments.

What I know for certain is that having every aspect of your life so fundamentally in the hands of strangers is stressful. Good practice shouldn’t be noteworthy, independent living shouldn’t be a lottery, and high-quality social care should be part of the fabric of our society.

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