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Direct from the source: the value of lived experience

Posted by: and , Posted on: - Categories: Care and support, coronavirus, Guidance
illustration of shops and services
Advice for people who buy care and support through a direct payment, as well as local authorities, clinical commissioning groups and those who provide care and support has recently been published.

Hope in diversity

Katherine Wynne: Every now and then, you come across a real glimmer of hope; usually it happens when I am part of a diverse community which values listening, adult-to-adult conversation, is based on trust, and takes the time needed to understand the heart of the matter. Most vitally, it includes the voices of people with lived experience, people who have a disability and/or health condition.

I work in a charity – not your average charity. Independent Lives was created for - and is run by - people with lived experience. It’s a gloves-off role and perfect for someone like me who believes everyone has the right to live the life they choose, that change is possible and who wants to see and make it happen.

Early in the year, in reaction to COVID-19, I was invited to join a group of people who meet weekly in response to the pandemic with a focus on personalised care, looking at how we can help shape services to reflect our needs during the current health crisis.

Along with a whole host of people who I’ve come to greatly admire, chaired by our friends at Think Local Act Personal (TLAP), with support from the Department of Health and Social Care and the NHS, we pooled our skills, lived experience, resources and passion.

There was a great buzz as we started to achieve many things together - and at speed! One of those things was our contribution to updating the direct payments guidance which has now been published.

When we are able to co-produce like this, health and care services – and the guidance supporting them - become more reflective of what disabled people and people with long term health conditions want to see. After all, there’s a whole life we need to get on with beyond professional advice and recommendations.

and I both know what it feels like to be in a system which works against you; one which makes you feel like an alien with no control, in a weird landscape. But when it works, it works well!

Family with children with disability having fun
Direct payments can help you organise the support you need to live the life you want.

Disability should never equal lack of choice

My name is Simon Wilson and if you click on my name at the top of this blog post, you'll see the t-shirt I am wearing in my profile picture reflects perfectly the life I want to live – Eat, Drink, Rave, Repeat!

I have been living independently with Direct Payments for eighteen years. I have Cerebral Palsy and no speech, so I require assistance with all aspects of my life.

I lead a very active life. Before coronavirus I travelled far to meetings, as I have my own mentoring service for families who have children with disabilities. I went clubbing and took part in other social events, so I need the right support from people with a wide-range of skills and qualities.

With my Direct Payment I chose to employ staff who can be trained to understand me and what is important to me. The additional work pays off - I can lead the life I want, because I have the support I want.

But I am sorry to say, that despite direct payments being a right to have for over 20 years and further reinforced by The Care Act in 2014 – there are still some painful examples arising from the health and social care system which are confusing and inconsistent - causing endless delays and are potentially life-limiting.

Just because I have a disability doesn’t mean I can’t make normal choices. I need autonomy, to be trusted and have easy access to information, advice and support when I need it.

Sometimes it’s really hard just to be able to have an ordinary life. But at least people like me, Katherine, and everyone with lived experience can feel more confident when we have the opportunity to input into the development and review of guidance that will make the difference.

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