Thriving not surviving – we need to care about each other

houseplant

Does the regulation of personal assistants contribute to good care?

“She feels like a houseplant” was a shocking statement spoken to me recently by the son of an 87-year-old woman, stuck at home: all her history, skills and interests forgotten with the social care system focussed solely on ensuring she was safe, fed and watered. I hope if I am known for anything it is my positivity, but it made me despair.

I have recently been reflecting on my own experience of social care and that of other people I know and know of. My reflections led to one place and one place only…a creeping realisation that we’ve got it all wrong.

My reflections led to one place and one place only…a creeping realisation that we’ve got it all wrong

In the media, stories of a care sector in crisis with growing demand, stressed workers, agencies going bust, local councils struggling to source the help that people need vie with shocking tales of people stuck in high cost, highly regulated, low quality settings with abuse unseen and unchecked. Wrong indeed.

People of every age have their own history, hopes, dreams, skills and experience. They have a drive to thrive, to be free to use what they are good at, contribute to their community and grab opportunities. I know these aspirations and attributes fit with well with the UN Declaration of Human Rights and would like to think they are basics for everyone in a modern UK society. But are they? And if you need help or care to live your life, is any of this on the radar of the people who make the strategic decisions or end up implementing the operational ones that emerge from this particular ‘care system’ sausage machine?

 How should we regulate the care sector? Let different voices be heard

With this at the forefront of my mind, I have been following with interest recent discussions on social media and beyond about the way the social care sector is and should be structured and regulated. A discussion in which traditional care agencies have a very loud voice and people who need support to live their lives have little or no voice at all. I want to redress that balance, to share my experience and maybe even rant a bit in the hope that different voices can get heard.

The view seems to be that what the sector needs to solve the very real problems it has is more regulation, more training and qualifications for workers and yes, more money. The argument goes that if every worker is qualified and their practice meets an agreed set of national standards things will be better. And that if everyone organising and delivering care is regulated and better funded, things will be even better still.

I would not profess to be an expert on regulated care agencies and don’t have a strong view on what that sector needs to be sustainable and enable quality providers to thrive. But I do think that blanket regulation of all care workers is not the answer. My personal past experience of using a homecare agency wasn’t particularly positive; care workers seemed to lose sight of me as a person in the quest to undertake the ‘care tasks’ they saw as their primary role. I also know my experience is not everyone’s experience, and that there are many excellent agencies able to offer great support to people.

What I am expert on is my history, my dreams, my skills, my family, my life and on the kind of help I need to live my life my way. To thrive and not just survive. I know lots and lots of other experts like me, and there are thousands and thousands of older and disabled people, who are experts on their own lives.

What I am expert on is my history, my dreams, my skills, my family, my life and on the kind of help I need to live my life my way

Years ago, I realised that using a traditional care agency, with all its regulation and training, would not enable me to thrive. I heard about a different way to get the help I need and since then have used a Direct Payment to employ my own supporters, recruiting workers for their personal qualities such as respect, compassion and curiosity rather than their experience. It is a decision I have never regretted. Whilst training and regulation is important and necessary, especially where specialist support is needed, I am excited by qualities not qualifications, values not standards. Thousands of other people have done the same, including many who choose not to become an employer and instead choose to contract with a smaller or more innovative ‘provider’.

Recruiting workers for their personal qualities…not qualifications

So now I worry that the loudest voices, driven by an underfunded sector in crisis, are starting to focus on the very kind of support I choose to use. I worry that they want to impose their view of ‘quality care’ with all its regulations and qualifications on people like me who have worked hard to escape it, and whose lives have been so much better as a result. I am all for checks and measures when you check and measure the right things. Check whether services and support can deliver humanity and compassion rather than time, task and keeping the ‘houseplants’ watered. Measure whether people can live their life their way. If we start to do this, then the arrangements that I and thousands like me have made will start to top the quality tables.

I want to try to make sure that quieter voices can be heard, to balance rather than compete against larger care providers. We need to be taken seriously to make sure our choice and control is not eroded, and our hard-fought rights can be upheld. Let’s start a conversation online and in person, and focus on #careabout.  

For more on this topic read Vanessa Davey's article on regulation of personal assistants

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