Week 13: Does awareness raising go far enough? #LDWeek15 #107days

Today we find ourselves in the middle of Learning Disability Week 2015 #LDWeek15. We thought we’d use Week 13 to ask a question which many seem very uncomfortable with, are charities part of the problem? We’re starting off with questioning awareness raising.

So, what is Learning Disability Week I hear you ask?
It’s an awareness week run by Mencap, who simultaneously advertise themselves as ‘the UK’s leading learning disability charity’ and ‘the voice of learning disability’. Quite some accolade to give yourself, and quite a claim to live up to.

Each year for Learning Disability Week Mencap pick a theme for the week and seek to ‘raise awareness’ of the issue in hand. The week has traditionally been in June, although there was a slight detour into August in 2013, but business as usual returned in 2014.

What does LD Week focus on?
Each of the issues that feature in LDWeek are an existing Mencap campaign or priority, so if you were to take a cynical view one perspective could be that they are using a national awareness raising week to raise the profile of their organisation and do work they’re committed to doing anyway. Regardless of that, let’s take a look at the focus for the last few years:

2009 saw a focus on accessible toilets and Changing Places

2010 was equal healthcare and ‘Getting it right’

2011 turned the spotlight on Disability Hate Crime

2012 stuck with Hate Crime; perhaps there was a delay in planning, or no other issues that needed attention given toilets and healthcare were ‘done’.

The CEO at the time stated: “The reason we went back to the issue this year, is because we’re making good progress,” he explained. “We’re making great progress on working with the police in a way that will lead to a steady reduction of hate crime and a tackling of the perpetrators. There’s much more to do, though”.

2013 took a slightly surreal turn about, where presumably having sorted hate crime, healthcare and toilets it was time to celebrate. The August week focused on, wait for it, superheroes!

Who is your superhero? Celebrating families ‘amazing, brave and selfless people’. Which is an interesting way to frame learning disabled people and their family members! We’ll come back to that later.

2014 stuck with a theme of celebration, after all there were obviously no burning issues that needed raising awareness of in these two years.

The billing for the week asked: Do you remember your first? We asked you to celebrate people overcoming adversity, and people’s prejudice and ignorance to experience their incredible firsts.

2015 Bringing us up to date, this year the tone is less party and more traditional with a focus on Hear My Voice and listening:

We’re reaching out to the newly-elected politicians and people in a powerful position to tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.

What format do these awareness raising weeks take?
A quick search on the internet will provide you with a range of approaches to raising awareness during LDWeek, with some grassroots activity across the UK.

That said there is also a bit of a format at play, whereby every year Mencap Head Office beam with pride as they celebrate the success of learning disability week (usually by the Friday on their website or early the next calendar week) that involves:

a) a London launch event or soiree at Westminster
b) a few mentions in the media
c) a new film or media soundbyte to use
d) some airy celebrity promises of support
e) a Charter or commitment for people to sign up to.

Anyone with a rudimentary knowledge of measuring impact would be able to see that these blogs ‘celebrating success’ are focused purely on activity and not on impact or outcomes.

The other consideration is positioning; what message is being shared about learning disabled people and their lives? Are we celebrating them as superheroes? Really? I’ve yet to meet a superhero, learning disabled or otherwise. Are learning disabled people and their families brave, overcoming adversity, pioneering?

Or are they just like you and I. Human beings, wanting human rights. No more, no less.

A question of impact
So all of this activity leads to what exactly? It’s not for us to offer an answer, we’re simply asking the question, but we would like to hear about the impact of such a large amount of focus.

While it is no doubt reassuring to the senior management team to tick a box on the annual strategic plan, and external profile raising never goes a miss, one can’t help but wonder whether all this talk and awareness raising leads to very little change.

Eddie S talk patch

Later this week we’ll take a look at charity accounts and some of the positioning of charitable activity. All thoughts and contributions very welcome as ever, drop us an email if you’d like to blog on this.

Day 103: Person centred practice, nursing students, and a legal webchat #107days

Day 103 is our first three-way share of a day. It is shared by Max of the UK Learning Community for Person Centred Practices, Bridget and Sarah from School of Nursing Sciences at UEA, and Steve Broach from Doughty Street Chambers.

When asked why they were supporting #JusticeforLB and #107days the UK Learning Community for Person Centred Practices had this to say:

We wanted to support the #JusticeforLB campaign because it highlighted how far we still have to go in the UK with promoting person centred planning, thinking and approaches. Even though these approaches were right at the heart of the ‘Valuing People’ strategy for people with learning disabilities since 2001, staff at the Assessment and Treatment Unit where Connor Sparrowhawk was confined in the 107 days running up to his avoidable death did not understand what Connor’s family were trying to achieve by holding a Person Centred Review at the ATU, and did not respect this work, saying it “Was not the Care Programme Approach”. It seems clear from the Verita’s report, and from other accounts, that if the ATU had listened properly to Connors’ family when they told them what was important to Connor now and in the future, and the things that would help to keep him healthy and safe (such as a proper approach to his epilepsy), his death could have been avoided.

This is what they decided to do:

Day103PostcardQu

I contacted the campaign on behalf of the UK Learning Community for Person Centred Practices. Our national gathering was coming up on April 30 2014, and I wanted to ensure that everybody there heard about Connor’s story. At the closing of the gathering, Gail Hanrahan, a close friend of Connor’s family spoke to everyone so passionately and movingly about Connor and his life. We shared a #JusticeforLB postcard with every participant (about 50 people) and asked them to make 2 pledges:

  1. Firstly to tell us how they would use their postcard to share Connor’s story, and
  2. Secondly what they would do in their work to ensure that within their sphere of influence, people and their families were listened to.

We’ve followed up those pledges asking people to let us know what they’ve done. Here are some of the responses we’ve received.

Cath Barton said ‘I always read Sara’s blogs and share and have made a pledge for George Julian’s #hairhack fundraiser which is raising money for Justice for LB and Rowcroft Hospice’.

‘My action is to always support people and their families to have a voice and be listened to. I hope my role as Community Circles Connector will help people develop relationships and networks which will support them to be heard and valued’.

Penny Jackson said ‘I am due to deliver Person Centred Thinking training in July to our Independent Futures staff and will be including LB’s story within this’

Max Neill took the big #JusticeforLB poster to share with the Preston Learning Disability Forum. They displayed it at events during Learning Disability Week in Preston.

Every story about how these person centred skills have worked and made a difference increases the impetus for change. If we can succeed in turning these person centred behaviours into everyday habits, at scale across whole services and sectors, then we can create fundamental lasting change in the culture, in the way we include and involve families and in the way we regard people.

Max and TLCPCP have written a fuller write up of their context, their gathering and the actions that have followed. You can read it in full here.

The second group sharing Day 103 are staff with interests in safeguarding and learning disability from the School of Nursing Sciences, UEA, Norwich. When Bridget Penhale and Sarah Richardson were asked why they were supporting the campaign they said:

We didn’t know LB personally but followed his mother’s blog from before he was admitted to Slade House and were very upset at the news of his untimely death. We have followed and supported the development of the campaigns since.

They were keen to ensure that a large number of staff and students at their university heard LB’s story. This is what they have planned:

On Day 103, sessions in the Essential Nursing Practice module for first year undergraduate nursing students are being dedicated to LB. The module covers the role of the Community Learning Disability Nurse and one of the specific topics today is about epilepsy; this is a core condition that our students learn about from the beginning of their programme (but also focus on throughout their course).

The Enquiry Based Learning Package is dedicated to Connor and students taking the module will be introduced to him at the beginning of the day. The Lecture on Introduction to Epilepsy will also be dedicated to Connor.

Information about Connor and the campaign will also be available for everyone working in or visiting our building on that day (through a slide on our plasma screen in the reception area of the building). We will continue to raise awareness about Connor, his life and untimely death throughout the coming year(s) – for as long as it takes.

The final person sharing today is Steve Broach, a barrister at Doughty Street Chambers. Described on twitter yesterday as a miracle, a ‘competent barrister able to put suffering people at ease’, Steve has very generously offered to run a legal webchat, an hour long Q&A session tonight at 7.30pm.

Steve will be holding a free web Q&A on the law in relation to education, health and care services for disabled young people in England. Steve will look at both the current law and the changes coming soon under the Children and Families Act 2014 and the Care Act 2014. He will also cover what the Human Rights Act 1998 should mean for the standard and quality of care disabled young people receive. Steve can only answer questions about the law in England, as the other UK nations have different legal frameworks, although some of the general points he makes will be relevant across the UK.

We are very grateful to Steve for his offer, and know that many of you will wish to make use of this opportunity. To participate you can send your questions in advance using the hashtag #JusticeforLBLaw, or add them on our facebook page, or as a comment to the web-chat blog page, and Steve will answer as many as possible tonight.

Please note Steve can only answer general questions about the law and cannot provide advice on individual cases during this session.

Please share the information about the web-chat far and wide, this is a great opportunity, and one that we hope many people will be able to learn from.

Day 60: 107 red balloons #107days

Day 60 was adopted by Beck from Frog Orange. At 3pm this afternoon everyone is welcome to join them at Shotover (at the top by the car park) to release 107 red balloons in memory of LB. Here’s what Beck had to say about why she wanted to support #JusticeforLB and the #107days campaign:

I wanted to adopt a day as part of the #JusticeforLB campaign for a number of reasons. I started reading Sara’s blog a few months before Connor was admitted to the treatment and assessment unit. I enjoyed Sara’s writing, her photography, her sense of humour.

I enjoyed reading about her musings about her family life and the little community we share. It was the only blog I ever requested to have emailed to my inbox. Naturally after Connor was admitted some of Sara’s entries made for really tough reading. I’ll never forget reading the few words she wrote on July 4th 2013. The horror, sickness and sadness I felt was so powerful.

I can not imagine the pain that Connor’s family and buddies are going through.

I was appalled by the non care that Connor received.

I was astonished how Sara and her family were treated during his stay.

I was horrified that Connor was allowed and left to drown in these circumstances.

And I have been disgusted by the way NHS Southern Health have behaved since.

I know Sara and Rich a little, we’ve hung out socially a few times and they have been customers (at Frog Orange) for years. Rich used to come in with Connor, his brothers and sister. He used to carefully herd them around the shop helping them spend their Christmas money.

One of the main reasons for taking part in this campaign is because if you know Sara and Rich at all, you know what utterly fabulous parents they are. They are just so bloody good at the whole parenting thing. It is just TOO cruel that they cared so well for Connor along with his brothers and sister, and within 107 days in the unit, he was gone.

So why balloons? Well, I don’t write a blog that anyone reads and so many wonderful people have written such powerful pieces in defence of Connor and his family. I thought maybe something visual would be good. A little time out in the fresh air thinking about the sunshine that LB brought to his family and friends. And if somebody finds a tag with #107days #JusticeforLB they might google it and spread the word. Let’s hope so.

Day60_107redballoons

Just to be completely transparent (it’s a style we’re deeply committed to), we had a comment on our post and facebook page from Vicky who was worried about the environmental impact of releasing balloons. It is something we have considered, and decided the risks are worth taking, you can read the discussion here.

Please do come along if you’re in the Oxford area and would like to join us and please do share any photos on twitter with the #JusticeforLB and #107days hashtags. Thank you.

Postscript

The super talented Izzi Crowther decided to produce an adaptation of Nena’s 99 red balloons for LB. So much love and so much awesome, here’s to the dude:

You and I, and the Frog Orange shop
Buy a bag of balloons with the love we’ve got
Set them free at 3 o’clock
‘Til one by one, they were gone…

One-oh-seven red balloons
Floating in the summer sky
Connor Co’s aerobus fleet
Go tell everyone you meet

One-oh-seven Shotover Park
One-oh-seven dogs will bark
Lorry lorry super-scurry
Call the troops out in a hurry

One-oh-seven knights of the air
Riding super high-tech jet fighters
LB is a super hero
LB is like Captain Kirk

With orders to identify, to clarify and classify
Scrambling in the summer sky
As 107 balloons go by
107 red balloons go by

107 dreams we’ve had
Every one a red balloon
It’s all over and we’re standin’ pretty
Overlooking Connor’s city

If I could find a souvenir
Just to prove LB was here
And here is a red balloon
I think of you and let it go

Day 56: Citizen power #107days

Day 56 was adopted by InclusionNorth. This is why they wanted to support #JusticeforLB and #107days:

Inclusion North’s Board of Directors and Advisory Council talked about what happened to LB and what has happened since he died.

They were all really upset for the people who loved & knew LB and wanted Inclusion North to do something that helped other people have their say & get involved as well as show we support the kinds of positive changes that would be Justice for LB.

Day56InclusionNorth

Inclusion North decided that they wanted to adopt a day, that coincided with a special self-advocacy meeting, to share real-life examples. These examples will harness practical examples of the changes that need to happen, and share success when people are already getting it right. This is what they have to say about their day today:

We decided Inclusion North should support the campaign by sharing information that shows how it can be different when people with learning disabilities and their families are treated with respect and in control of good support. On 14 May we were already hosting a special meeting for self advocacy leaders to meet with People First England so it felt perfect to do the two things together.

Luckily we could, and we adopted the day from the #107days campaign. We are sharing pictures, stories, videos or even reports that show how we all need to work together to make the changes that are needed. Most of the examples we will share have come from people with Learning Disabilities and family members who got in touch, but if we are honest, the staff team also added in some stuff or twisted the arms of some people for examples we really love! Thank you thank you thank you to everyone who has shared something already & those who do on the day.

At the same time 80 self advocacy leaders and their allies are meeting in York so we will also be sharing updates from that meeting as well. You can see more on Inclusion North’s facebook page.

You can join in with Inclusion North on twitter today and they’ll be using the hashtag #107days. Even better they’ve promised that after the day they’ll collect everything that they get into ‘one big example of what can work if you treat people right’. Looking forward to seeing it.

POSTSCRIPT

19 MAY – Inclusion North have shared with us the write up of the event and learning so far, you can download it by clicking on the first page below:

Screenshot 2014-05-19 17.53.04

Day 55: Connecting voices #107days

Day 55 was adopted by Paradigm and friends, with an excellent write up being provided by Sally Warren, Jayne Knight and Nan Carle. You can read about their day in full in this attached pdf.

Head heart hands

The day was spent in a community workshop, facilitated by Paradigm and Nan Carle, which focused on connecting the voices of people from around the country to highlight injustices, share thoughts and agree action to stop the crazy, ill thought out decisions that prevent people living valued, ordinary lives. Lives with their family and in their community. In a community space, passionate people (family members, self advocates, researchers, support workers and community members) met for a series of conversations, which lead to a commitment to personal action and to new alliances to ensure collective action.

Group 1

A family who are also fighting for their son/brother, currently in an institution and his voice lost, were part of the workshop. The whole family are in danger of being alienated from the life of their son. They shared their personal story giving a real understanding, credence, strength and power to the need to resolve the abuse and neglect experienced by LB, his family and others.

The workshop was structured around five conversations:

1) How did LB’s story touch me personally, at work and at home?

One of the overriding feelings shared in the group was one of shock and dismay that people are so de-humanised and invisible. The family present explained how they themselves feel like the ‘invisible family, like ghosts’. People’s feeling are reflected in the images created in this montage.

Thoughts and feelings montage

2) What concerns does this bring forward for me, at home and at work?

As you can imagine participants shared a lots of concerns.

The key concerns were:

  • safeguarding systems that isolate people. Where members of the public, families and staff are raising concerns but not being heard. ‘We have a system in place to check people are safe and well, we have followed it so…all must be OK’. Dangerous!
  • complacency: what is it that makes it seem OK to offer a low standard of care? The idea of ‘acceptable rather than best’ is live and kicking…how can this be?!
  • a limited understanding by many of what good support is about and the need to go beyond minimum standard and compliance
  • about language. For people who are not labelled we would use the language of violence, abuse and neglect. Why do we use ‘cuddly language’ when it comes to people who are labelled? A Mum in the group was forbidden from using the word abuse!

3) What resources are present which would help us find real solutions to ensure ordinary, meaningful lives for all?

Creativity, connection and the knowledge of AND belief in what is possible are the resources we all bring. We must get ‘smarter’ at recognising and sharing the range of resources around us all. People, community, families, social groups, skills exchanges, agencies and more. This conversation stimulated more and more resources and ideas. Ideas that people hadn’t all considered (see full write up for more detail).

4) Personal commitments to action

Connecting Our Voices directly links to connecting our action, or as we said our ‘passion for action’. Each and everyone of us as a part to play in ensuring the LB’s life and death is not forgotten. People’s commitments to action were varied with people feeling able to contributes in different way but the message was that whatever you can do is important.

5) Shared action

As is typical at the end of a day in a room filled of passionate people determined to be part of a better future, time started running out!  We have created a network to stay connected to ensure mutual support and action. The three areas of collective action identified with initial connections and ideas in place were in relation to: 

  1. collective action to make people aware of what is possible
  2. family support
  3. housing for all

At the end of the day we are puzzled, concerned and angry but the fire in our belly against injustice has been stoked. We’ve made new connections and restored our passion for action and our hearts and minds are connected!

LB was with the group throughout the day with a symbolic empty chair. We are grateful to them for sharing his memory and working together to ensure that improvements happen. There will be a full write up on the Paradigm website in due course and we’ll add a link here when it is available.

Day 53: The golden M (iddle) #107days

Today is a bit of a ‘breath catching, where are we going, what are we doing and how are we doing it?’ kind of day. Lovely Saba Salman provided an independent view of #107days on Day 47. Here we are writing this post from a most definitely not independent view, with a few reflections on what #107days has become and is becoming. To kick off, I dipped back into my blog to see what was happening with LB this time last year. It was the Land of the Golden M day. The trip to the fast food joint that is friend to families with ‘unruly’ kids across the country. He ordered, scoffed and enjoyed. With no sniff that there were only 53 days left in his lifetime. He should have had at least 14,000, even with reduced rates for living in a country in which this label guarantees a default reduction in life length.

ryan5-163

Anyway, let’s not dwell on that right now. Let’s think about the same set of days, 12 months later. Well. It’s astonishing. Remarkable. Moving. Inspiring. And unlike other campaigns. Well we think so anyway.

It really has taken on a life of its own. This may be because neither of us have any experience in ‘running a campaign’ and we started off with the sketchiest of plans. I dug back through the mountain of emails to find out when the idea began and found this from George on March 8th;

Was thinking we need to share something on outcomes on fighting fund blog and was hoping might be able to come up with 107 days of action – inspired by tweet earlier. Just a thought, idea, action, memory, reflection each day? Maybe? 

Eleven days before kick off. With no funding. No plan. No rules or regulation. Just a desire for action, a commitment to improve things and an army of similarly enraged people who clearly wanted to do something. George set up a spreadsheet and we took to social media.

Day 25 featured a recap of activity to that point, since then we’ve had another 29 days of pure brilliance. There have been creative contributions including musical ones in the shape of First Note in Luton recording a song for JusticeforLB and Louise and Anne-Marie dedicating a choral performance of laments to LB, artistic ones in the shape of buses and yesterday’s afternoon tea and mosaic making, and many more postcards of awesome arriving.

There have been extreme physical endeavours to raise awareness and funds, including 15 year old Madi who kayaked 125miles over four days and Jane who is in the middle of running 107ks. These personal feats are accompanied by the fulfilling of LB’s personal ambitions, with three school buses and a Scania truck dedicated to LB, his very own fleet.

A number of brave souls have shared their personal experiences, or their hopes, fears and dreams for the dudes they care about. These have included drops of brilliance, a celebration of big man’s birthday, reflections on when care goes missing, thoughts on a disjointed system and working within it, a question of trust, some thoughts on advocacy in speaking up and speaking out, and a post on ATUs, autism and anxiety. We also continue to make ripples slightly further afield, in France and Canada most recently.

There have also been attempts to raise awareness and knowledge by researchers and academics at conferences and through their teaching. Topics included art history and legal commentary, the Mental Capacity Act, the essentials of care, the role of people with learning disabilities in sociological research, a focus on institutional abuse and people with learning disabilities, and the violence of disablism. These academic offerings, sit alongside a remarkable response from learning disability nurses and student social workers. A day in the life of… provided useful food for thought on nursing notes and language, the second WeLDNurses chat was held focusing on preventable deaths, and one student social worker decided to be the catalyst for tenants in her placement setting to develop one-page profiles.

The campaign has been such a success purely because of the contributions and commitment people have made. Such diversity and a randomness that is refreshing, not least because it perfectly captures LB’s quirkiness and irreverent approach to life. We are still only half way with much more to come, including more focus on advocacy and activism; a number of conferences, workshops and seminars; more quilting, a comedy night and the release of 107 red balloons. There will be many more blog posts, videos, animation and music produced and celebrated, including a campaign flag at Glastonbury. There are also a number of days adopted for fundraising activity including 107 London buses in a day, George is shaving her head (we don’t do things by half), and the party night to end all party nights.

There is real momentum and determination for change which (hopefully) can’t be downtrodden and chucked into the inertia bucket.

107days

So is it all worth it? We think so. So far we’ve achieved a number of the aims set out in the Connor Manifesto:

  • a Serious Case Review into LB’s death is about to begin and will examine how such poor provision could be commissioned
  • an independent investigation is currently being arranged into all the unexpected deaths in Southern Health’s mental health and learning disability services dating back to 2011
  • one of the remaining #107days days will involve a meeting with our MP, Andrew Smith, and Deborah Coles, CEO of INQUEST to discuss the issue of independent investigations into every death that happens in a secure (loosely defined) setting.

Anyone who would like to dismiss us as using this case inappropriately, can feel free to do so, but we are proud of what has been achieved so far, and committed to the long haul. For too long people have lamented the state of provision for people with learning disabilities, much hand wringing and head scratching appears to have led to a systemic apathy and not much else, with the Winterbourne View JIP recently described as an abject failure by the Minister. Maybe it’s time for the suits in the system to take a long look in the mirror and ask what their own behaviour is affirming in this malignant system. We don’t need more concordats, we don’t need more of those responsible sitting around meeting tables and repeatedly asking people to share their good practice.

We need people to stop and listen to what people are really saying. To leave their prejudices and fears and professional cloaks at the door, and take the time to hear what people are saying, and join them in their journey to improve things. While they’re busy attending meetings and seeking examples, we’re busy making change. We have 54 days to go and most have been adopted, but we can double up on days. We have a number of actions concluding at the end of #107days, and still many ways in which people can get involved.

We want to finish by reiterating Saba’s call to those in authority:

People need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

There is always room on the #107days bus, and everyone is welcome.