Dusting Ourselves Off

After posting the blog on My Own Front Door we had a huge response, some of it very positive and some less so, in fact to be blunt it got pretty heated at times. So after careful consideration, we think that it’s best not to proceed with My Own Front Door as a 7daysofaction project. It’s still a good idea and a number of people and organisations are thinking of taking it forward as a new initiative and I’ll be supporting them in that just as I’ll be supporting the families at 7daysofaction.

So where do we go now with 7daysofaction?

Well as recent events and posts on the have shown, despite the rhetoric about improving the system, too much is as bad as it was, and as always it’s people with learning disabilities and their families who are living with the consequences. There are plenty of people who want 7days to fail but the need for 7daysofaction is as great as ever so we need to start working on our next campaign. Well – I’ll let you into a secret, we’ve actually been working on it for quite a while now.

As I said in my last blog, last Summer we put in a freedom of information request to NHS England to get the financial information from the Transforming Care Partnerships and with a lot of help from Elaine James and Chris Hatton we’ve been analysing it. We’ve already sent off an academic paper (well, Elaine did) but we are now approaching the point where we need to start using some of the information we have produced for our next 7daysofaction campaign.

But rather than just writing a series of blogs on the finances of the system, which would be pretty dull. What we want to do is to share families’ experiences around a number of themes and use that to illustrate the impact that money and economics is having on people’s lives and the struggle to get people home, or keep them at home. We want to weave the two together and bring the data to life with your stories. We want to remind people that every argument they have about who should be paying for something has very human consequences.

There are three themes that we want to be part of the next campaign:

  • The impact of distance on family life
  • Fighting about money and the struggle to get home
  • Local provision and support

So we want you to tell us about your experiences on any or all of these themes. Unlike previous campaigns, all of the experiences that we share will be done anonymously so you don’t have to worry about people using the information you share with us against you.

We’ve created a web-page on our site where you can tell us about your experience so that we can build it into our next campaign.

Click here to tell us about your experiences

OurNextCampaign

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7daysofaction – Our Plan

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.

Our Plan

Going forward we propose that our campaign has two focuses

  1. 7daysofaction
  2. My Own Front Door

7daysofaction

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.

MOFDOOR1

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.

MOFDoor2

It will have a news section.

MOFDoor3

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.

MOFDoor4

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.

 

Charging at the Romans

Its AD 61 and you are standing in a field somewhere in the Midlands and you are angry, raging at the injustice of it. Your world has been conquered, Boudicca’s daughters have been raped and along with well over a 100,000 of your fellow Britons you are hell bent on having your revenge and on punishing the Romans for what they have done. Driven by your indignation and convinced that you have right and numbers on your side, you and your fellow tribe members charge at the Romans – a seething mass of rage surging across a field. Unfortunately, it was a field of the Romans choosing. It was open, yet narrow and despite being massively outnumbered, their organisation and superior tactics meant that they were able to slaughter tens of thousands of Britons for the loss of only a few hundred Romans.

There is something about this scenario that reminds me of us. I’ve lost count of the number of times I’ve heard the parents of disabled children and adults described as warriors and we are that. And time and again you see a new generation of fresh faced families drawn into the choice between collaboration and conflict. Should we work together with the system to improve services for our children and then adults? Or should we arm ourselves with a Code of Practice and a phone call to IPSEA and embark on a lifetime of struggle?

It’s a Hobson’ choice. On the one hand working together with practitioners is essential if we are to get the best outcomes for our daughters and sons, and on the other hand if you don’t struggle, if you don’t fight for what is right the system will ignore you until you become a crisis.  When that happens we all Charge at the Romans only to be mown down by their might and intransigence.

On Wednesday night Dispatches showed a documentary into some of the care that was being provided by St Andrews Healthcare in Northampton – it was harrowing and disturbing viewing and the families that took part in it displayed enormous dignity and courage. The programme rightly sparked a wave of outrage across social media of which I was a part.

The next day St Andrews responded with a statement stating that the programme was biased and that the film-makers had not given them a fair right of reply. True or not, there were a number of other things that hadn’t been done. As somebody who has spent a lot of time researching how Transforming Care is being implemented, I knew how cursory and poor the coverage of that had been. I knew that the programme researchers didn’t know how poor St Andrews implementation of the New Code of Practice is, and why that is so important, and that this failing is spread across the whole sector. I also knew that the large providers like St Andrews hold commissioners desperate to find a bed for somebody in crisis, to ransom. In short the programme makers had been over-reliant on the stories of the families and had failed to support their courage with the research and rigour that the subject deserved.

It was probable that this lack of rigour was one of the reason’s that the story didn’t get that much additional coverage in other media outlets and it was probably for this reason that people on social media were popping up to defend St Andrews. One of the people who popped up to defend it was a film-maker who apparently argued that a film he had been involved in making showed that there was another perspective. His film called “In Our Own Words” (which had undoubtedly been commissioned by St Andrews for marketing purposes) was presented as the voices of some of the people who had been at St Andrews and late yesterday it was put on the 7daysofaction public campaign page. Where it was greeted with the comment “Fuck the fuck off & then fuck off some more” and 14 likes. The charge across the field was in full flow. There was no thought that these were the voices of young people and how this might look, there was just rage and indignance.

However, justifiable anger might be. It is in moment’s like this that the voices of families and their supporters become instantly dismissable. Whilst it is perfectly reasonable to challenge the independence and balance of a video, mindlessly attacking a representation of the experiences and voices of young people makes the marginalisation of families so much easier to achieve – rather than being experts in the culture of our sons and daughters – we become an unreasoned mob.

St Andrews is a part of a huge industry that has grown up around the care of people who are in crisis. It is an industry that has its own interests and its own agenda. It has evolved out of an era when people with learning disabilities were often seen as less than human and where the voice of the clinician is seen as un-challengeable (not much change there). Some of the people who work in it are good people trying to make a difference, some are not. It is a part of the healthcare system that operates differently to other parts and it is far more affected by the decisions of healthcare entrepreneurs than much of the rest of the NHS. It is an industry that is expert in how it presents itself and is more than capable of hiding itself behind the voices of young people.

That is what we are fighting. If we charge at it without thought, we will get slaughtered, at least in public relations terms.  But it is vulnerable. It is vulnerable to the rights of the people who go there, to the concerns of their families, their practitioners, their regulators and their commissioners. All of the people with a responsibility for a person’s well-being and best interests.

Norman Lamb was the Minister that began the attempt to Transform the Care of in-patient provision following Winterbourne View. Yet, despite his best efforts as a Minister and since, and the efforts of a great many people, not enough has changed. But it still can and I genuinely believe that if we all work together we can change an industry that has brutally resisted transformation. But if we as families want that to happen and it won’t happen without us – the whole “Charging at the Romans” thing – it’s really got to stop.