The impact of lived experience
Eden Arts Director Adrian has featured in a documentary on BBC Radio 4 'File on 4'. While this is not directly about his working role it is a story that has an impact on him and therefore his work. It feels relevant that this lived experience is placed in the work context.
He has made the following statement:
I am really grateful to Carolyn and Ben and the BBC for covering this horrendous story. It is something that I and other families live with every day, and it is impossible to overstate the impact it has on us. At the centre of this are our relatives and loved ones, trapped in a system that imprisons them for years – it feels reminiscent of, and a descendant of, the processes of the past that placed ‘difficult’ people in asylums, out of sight and out of mind.
The reality is that this is about lack of social care provision, and that this is a post code lottery. I have heard both Cumbrian local authorities, Cumberland, and Westmorland and Furness, claim that they are great and delivering well on adult social care. However, the fact is that according to data gathered by Mencap, North Cumbria and the North East are the poorest performing place in the country for getting autistic and learning disabled people out of hospital and into the community.
People like my daughter are ready for discharge but there is a lack of appropriate places for her to be discharged to, and in Cumbria at least there seems to be a negative attitude to supporting in her family home with me. We have literally experienced a situation where I took legal action to get my daughter home from the placement 130 miles away that she didn’t want to be in – a placement that will have been costing the local authority many thousands of pounds a week – and then when she was home all support disappeared for months, we didn’t even see a social worker in our house. This withdrawal of support felt like a punishment, a determined attempt to undermine home as an option, and when it inevitably broke down is used as the example of ‘home doesn’t work’.
The bizarre contradiction is that the system chooses the expensive option rather than supporting the cheaper one – so this is not about money, it is about inflexibility and a lack of creative solution making.
My daughter was sent to London ‘temporarily’ to a place that was identified as ‘the best option’ (yet in reality was so bad that it has since been closed down), she was there for two years. That placement was paid for (to a private company) by NHS and local authority here in Cumbria. Since then she has been in Matlock, you couldn’t find a more difficult place to get to from Cumbria if you tried, it takes 3.5 hours.
The local authority insists that it knows best and yet repeatedly makes the wrong decisions that are always based upon procedural and systemic plans. It/they seem to be incapable of recognising that it is failing and that it needs to change. When you speak up you are treated as a problem. There are insinuations made about you that are then used to undermine you When I complained I was then ‘frozen out’ of all involvement in my daughter’s case due to the ‘ongoing enquiry’ that went on for a year – this effectively ensures that you withdraw your complaint (which I did) and never do so again. When I raised this in a meeting the social worker said I should complain! It is utter madness, systemic and inflexible and inhumane.
My daughter is distressed daily. We are currently fighting another legal battle to get her released. The local authority has once again claimed that it has found a solution – one that flies in the face of logic, a place that I feel 100% certain will not work, yet the LA again insists it is the best option. They insist on consulting you (that’s their system and shows that they are ‘doing well’) then ignore what you say (because that’s their professional prerogative). So they are never wrong, yet they are always wrong.
The daily grind of this is hard. The emotional toil is difficult. I fear for my daughter’s wellbeing and even her safety. We fight on.
Professionally it feeds my belief that creativity plays a role in all walks of society, it is not just about producing art or events, it is about creative thinking, that this is the greatest role that creatives can play.
