For a while now we’ve been working on a plan on how best to take things forward with 7daysofaction. For those of you who don’t know, 7daysofaction is a family and supporter led campaign that is fighting to get people home from inpatient hospital provision. Many of the people being held in these hospitals are being detained against their will under the Mental Health Act 1983 and many are simply there because there is insufficient support in their home communities. The campaign is fighting to get people released, it’s fighting to keep them out and it’s fighting to stop people from going into these places in the first place.
So far our campaigns have mainly consisted of highlighting the stories of individual families and the challenges that they face in their struggle with the system, but for a while now we have been looking at ways of adapting and broadening our campaign and making it more solution focused. We successfully put in a Freedom of Information request to get financial information how Transforming Care Partnerships were spending money. We have developed a website that allows us to share people’s stories and to keep track of what is going on in their area. We and our partners are working with individual families to help to get them home. But the struggle to get people home has to be stepped up, because in too many places people are still being drugged when they do not need to be, restrained when they do not need to be and subject to assault and excessively long detention.
In order to do this, we recognise that we will need to work collaboratively with practitioners, commissioners and providers to ensure that everything possible is being done to reduce and minimise the use of inpatient hospital provision for people with learning disabilities and/or ASD. And therein lies the problem that we have in developing our plan for the way ahead. How do you tell the parent of somebody who has had their arm broken by a support worker, that working in partnership with the organisation that employed them and then covered it up, is the way to go? How do you tell the mother of somebody who died in an organisation’s care that the best way to stop it from happening again is to work with the organisation? The simple answer is you can’t and you shouldn’t.
Nevertheless, the dilemma remains and it’s a dilemma that is common to many campaigns working across health and care, and for a while now the steering group at 7daysofaction has struggled with how best to reconcile it within the work that we do. We have been a space for people to share their hurt but at the same time we have striven to find solutions. I’ve advocated that we become less reactive and more strategic in the way that we operate, whereas Mark Neary has done what he always does; he simply reaches into the humanity of a moment and nails it for what it is. My argument is that angry people are easy to dismiss; and his and I suspect many others would be, that if you don’t get angry in the face of these things you are missing the point? He’s right of course, but that doesn’t change the reality of how easily families can be marginalised.
So where does this leave us, how do we reconcile the pain that families have had to endure and their right and need to express that pain; with the need to work in partnership with a system that is too often the cause of that pain? You probably can’t but this is what we are proposing to do.
Going forward we propose that our campaign has two focuses
- My Own Front Door
7daysofaction will continue to focus on the experiences of people and their families and their struggle with the system. It will shine a light on what it is actually happening to people in inpatient provision; and as it has always done, it will do this by telling the stories of families, gathering information and challenging the myths pedalled by vested interests. We will continue to provide families with a space to share their experiences by:
- Maintaining the website – sevendaysofaction.net
- Maintaining two Facebook Groups
- 7 Days of Action Campaign https://www.facebook.com/groups/7daysofaction/ This is the main Facebook Campaign Group which currently has almost 1700 members.
- 7 Days of Action Support Group – This group was recently hacked or infiltrated by a major independent provider and the information was used in an attempt to undermine one of our members. So we will be creating a secret and more secure group and admission process for families.
My Own Front Door (MOFD)
My Own Front Door will be a platform for collaboration that will allow people and organisations to work together in support of the interests of people with learning disabilities and/or ASD and their place in our community.
We have defined it as – A collaborative project – People, families, practitioners and academics sharing experiences and perspectives on the rights of people with learning disabilities and or ASD to live in their communities in a place they call home.
It will have a news section.
And a section called My Own Front Door which acts as a doorway to different areas of interest. Our intention is that each area of interest will have its own sub-domain and that stakeholders who are involved in that area will all contribute content and co-edit their part of the site.
So far Bringing Us Together, Respond, You Know and of course 7daysofaction have expressed an interest in becoming a part of this collaborative project. Over the coming months we want other organisations and individuals to join us and work with us in developing this solution focused resource. We want it to become the place to go for examples of what works, with a culture that recognises and respects differences of perspective, whilst at the same time being rigorous and challenging. It will have a governance framework that recognises the right to challenge but requires mutual respect.
It will continue to work to get people out of inpatient provision but the project’s focus will be broader than that of 7daysofaction itself. The emphasis will be on the place of people with learning disabilities in our community and the importance of having somewhere that you can call home.
We envisage that it will cover a broad range of interest areas from, Transforming Care, the Transition from Children’s to Adult’s services, to Patient Safety and reasonable adjustments. As families we know that policy initiatives come and go, so overtime these interest areas will evolve and so we hope, will the organisations and individuals who come to play a part in this venture.
The Next Steps
We believe that this approach can help us to find a way ahead for 7daysofaction that recognises the hurt and pain of so many families, whilst at the same time creating a platform for the collaborative working that is central to a better future for our loved ones.
We want you to tell us what you think.
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