A Sticking Plaster Solution that is not a sticking plaster solution.

Lets start with a story, (thanks SHCR:) A few weeks ago one Sunday I was carrying a bit of timber and somehow something on the floor managed to trap my feet, the harder I tried to move the tighter the grip on my feet. It was 11 am, so no I wasn't carrying a gin and tonic!

Cut to slow motion sequence, the feet have stopped moving, the rest of me hasn’t so with hands full I was right on target to take a bite out of the concrete floor. I decided that a flat face wasn’t a look I aspired to so used my forearm against a timber post as a brake block. I will spare you the close up shots and rather bleepy soundtrack.

So now I have a deep graze, but on the upside at least I don’t have a flat face. I washed the wound with boiled salt water and applied antiseptic every 12 hours and kept it lightly covered most of the time. I am 61 and have a rather denuded immune system so despite my best efforts infection was setting in rapidly and the weekend was approaching.

It was now Friday and the skin round the wound was reddening and hurt as much as the wound so I went to the pharmacist for advice. I should mention that I had a nasty throat abscess in July and ended up in A&E twice so I know how rapidly things can go pear shaped.

The pharmacist recommended Hydrocolloid dressings, I’d never heard of them and yet apparently that have been in use in hospitals for years as it speeds recovery and reduces scarring. So I used one on my forearm, they are a little weird and floppy, no jokes please:)   

Within 24 hours the wound was calming down, by 48 hours all reddening had gone and because they are breathable and water proof you can take a bath no prob. In terms of cost they are great value as you only need to change them every 3 days and they don’t fall off meantime.

I bet if you looked at the total cost of treating infected grazes in the over 50’s that have then needed a Dr, Practice/District Nurse or A&E to intervene its a significant annual cost to the NHS.

So why not run an awareness campaign and consider handing out a pack of these Hydrocolliod dressings with every flu jab... because compared to anything else you can buy over the counter these dressings will stop a lot of minor injuries turning into things that need medical intervention and that cost the NHS a lot to treat every day?  

Just saving the cost to the NHS of 10 patients being treated for infected grazes would buy an awful lot of sticking plasters...

Radical or old school common sense? 

What went in to creating the toolkit?

Grassroots Suicide Prevention Toolkit for people with Learning Disabilities 

Some years ago I was asked to draw on my 30 years experience as video director to transform a 40 page legal tenancy agreement into a “see and hear” version for supported living tenants for Origin and Dimensions. So I worked with the tenants every step of the way to benchmark and test my “visual language”. 

As a troubled young man I have personal experience of what it is to have suicidal feelings, I shared my story on the Samaritans website stressing the importance of there being someone to talk to at a time of need. The 3 suicides that have touched my life were sadly all people with learning disabilities. 

Being a tad dyslexic means I have a learning disability too so perhaps it was destiny that the inspiring Chris Brown, formerly a director of Grassroots Suicide Prevention saw my housing association work and got in touch.  

Over a period of about a year we slowly gathered research as there is nothing out there, some was done quite formally via sessions run by Brighton and Hove based advocacy Speak Out with their clients. You can read some of their stories but you will need a box of tissues.

I also spent that time talking to parents and carers from around the world who so kindly shared the intimate and tragic details of their experiences with a stranger. It was the hardest research project I have ever taken on, but it gave me a much better feel for the breadth of the LD spectrum and how best to communicate this most difficult of topics to them. 

As ideas and concepts were developed we were so lucky to have a team of people with learning disabilities who were prepared to get involved and give us their vital feedback,which now forms part of our evidence base.  It’s a tragic fact that they all knew people who had attempted and sometimes succeeded in hurting themselves or ending their lives, so special thanks to them for their courage and commitment.

I spent 18 months creating testing and refining the suicide prevention tool kit, getting the language and tone of voice right was a complex challenge. We put considerable effort into making the character  "gender neutral", the skin tone was approached with the same inclusive thinking. When we finally had a finished product we then ran a pilot for 6 months.  

The degree of approval and positive feedback has exceeded anything we ever dared expect, all the respected names in this area have endorsed it, LD nurses let us run a tweet chat about it. I have 
presented it to an audience of LD clinicians at Kings College and again the feedback was positive.

Having got clinical sign off from Brighton and Hove LD team and with 500 copies out there in the community the vision is simple, it should be a free tool available to individuals,charities, supported living providers and carers nationally.  

The overriding message from the toolkit is how important "talking to someone" is, and we touch on and acknowledge the reasons why this is so hard and more importantly we guide them in ways to start the conversation to get the support they need. We also provide strategies for identifying triggers and simple tools for coping when they feel overwhelmed.

From my experience of working with poeple who have an intellectual/learning disability just because you may have a learning or Intellectual disability doesn't mean you experience loss, sadness, isolation or any other emotion differently from anyone else. 

What is so much harder for people with LD/ID is to communicate how they feel and understand what they are feeling and then to reach out to get help and that's where you may come in.

The toolkit was produced in partnership with Grassroots an amazing Brighton based suicide prevention charity.  http://www.prevent-suicide.org.uk

In order for the toolkit to become a free to use nationwide resource we are now updating the "get help" section and we are looking to any organisations around the UK that do provide support for people with learning difficulties to add to our list. Can you help? if you can please contact grassroots or me, I am @chicustard on Twitter.  

Here is a link to the toolkit video. 

https://www.youtube.com/watch?v=FNaWcmlEM9c&t=1s

Thanks for reading 

Jon 

Copyright Jon Bryant 2018 

     

Recruiting for change

Bringing about organic cultural change.

I think it’s widely understood that for change to happen successfully and to be self sustaining there needs to be a cultural shift for any 5 year plan for the NHS to work.

Clearly one way is via SHCR reaching out to NHS staff to create change agents. This has a finite limit, only those who want to learn about being change makers will engage.

What has been abundantly clear observing this term of students is that there is one defining quality common to all no matter of status, role or location. That is their underlying caring nature, what is in their hearts and what underpins their personal satisfaction and rewards is helping people.

I don’t think these qualities are or should be the exclusive domain of those directly involved in delivering care. No matter what your role in the NHS, you, patients and the NHS will benefit directly from your passion to help, you will do a better job because it matters to you.

For that reason as part of every recruitment process, be it for book keepers, IT people, lab technicians, senior management or maintenance staff, identifying those who genuinely care and have a compassionate nature will be the ones who will stay in post because of the job rewards.

I would encourage management to ensure all those “behind the scenes” people get to spend some time closer to the patient experience so they can engage in that feeling of reward and making a difference. This would do much for the sense of cultural cohesion around a trust and would break down barriers and hierachies.  

The staff churn rate in care and in some areas in health runs as high as 19%. The cost in terms of recruitment and training that is lost to the NHS is hundreds of millions per year. People who have found their vocation and get the job rewards mean retention levels go up and the depth of experience is retained by way of organisational wisdom.  

So if at the recruitment phase measuring compassion was possible, this would improve retention, it would also be drawing the right kind of people into the NHS, so over time, perhaps 5 years the ”workforce” has been revitalised with more of the right kind of people.

A change in how the NHS recruits and the values it seeks, which might carry more weight than qualifications in some roles, is how longer term the NHS can organically change and bring about sustainable change in my view.

The recruitment tool I made for the care sector, that are already tried and tested on 1000’s of people can easily be modified to also identify those who will be open to change as well as having that special something.

As we have seen from SHCR it is the caring nature that has driven the desire to bring about change…

The cost of doing this is tiny, compared to the year on year savings via improved retention. If you can't think of a downside then you do have to ask yourself why it shouldn't be piloted:) or have I oversimplified things again? 

Framing

I have used a lifetime of acquired skills in mainstream corporate communication combined with my insight in to what it is to have a learning disability as I am dyslexic to make a difference for people with learning disabilities.

I converted a 43 page legal tenancy agreement for supported living tenants in to an accessible see and hear format, the visual language was developed with continuous input from people with LD. I am now using this work as a basis for new tools to improve the lives of people with learning disabilities.

Having had unanimous positive feedback from both Clinical and academic people including professors of learning disabilities and the LD nursing community I want to bring the suicide prevention tools for people with LD into daily use by the NHS.

There are many advocates and endorsements for my work in this field I now want to form a group of academics and medical people to support the project and take it to the decision commissioners in the NHS so people with learning disabilities can benefit from this piece of work.

Reflections on Module One

If like me you have dyslexia and you have to say out loud School for Health and Care Radicals in order to type #SHCR because the letters are like bars of soap in the shower, the tighter you grasp them the further they go, it’s probably impacted your life from a very early age.

I can still remember being at primary school and being forced to stay in the head mistresses office for an excruciating length of time until I read the word “Garden” out loud, that was 52 years ago! And it still makes me clammy to think about it in writing this.

Having failed the 11+ my self confidence took a massive knock, having failed to live up to my parent’s expectations. Secondary school was even worse, back then the more enlightened teachers called it word blindness, but the majority labelled it as laziness. It was a humiliating and damaging experience. Perhaps the only positive thing that came from it was I discovered that I was “a creative” type, and that my artistic side was one area in which I could excel.

My teens and 20’s were in hindsight a period of self harm, as I sought to bury my feelings of failure and inadequacy with drugs.

To survive in the world I had to rely on “intelligence” and a creative approach to life that was not based on reading, education or conventional learning. I had to find other ways to function and absorb information about new things. Above all I learned to improvise, to solve problems with practical skills and common sense and NOT by the book.

To me this is the only way I know how to operate; I am totally left brained if you like. I also grew to dislike process, that works for those who are wired that way but for me it often seems to be a replacement for the intuitive. In fact it often appears to me to stifle free thinking with its rules and structure.

After 35 years of making it up as I went along as a video director/producer/lighting cameraman in the corporate world I started getting involved in the social housing, health and care sectors. This type of work gave me rewards I had not previously experienced and not knowing what I couldn’t do I created a visual language for people with learning disabilities as in my view this was about human skills, communication in its purest sense.

Perhaps arrogantly I felt that it was unlikely that a learning disability “professional” be it academic or clinical would be likely to have the skills I felt were important. I also felt my own disability was perhaps for the first time a gift.

Out of that project came another challenge, to make a suicide prevention tool for people with learning disabilities. Again all I had was instinct and a modicum of intelligence to throw at it. 

I spent 18 months living with it, refining reflecting and polishing. It then dawned on my as to why I was dragging my feet, because to go public to a world of Dr’s Professor’s, LD experts, LD nurses was to be put back in the head mistresses room, to be back a school, to be back in a world that was wired so differently.

What I was fearful of was rejection and failure, that my thinking was off the mark, that I had dared to say I think I know how to do it better. This is why the self efficacy element in module one really rang bells for me.

What gave me the confidence and self belief was also the thing I feared most, stepping up to the plate and being judged.

In taking the risk, being passionate about what I believed in and sharing what I thought was the right approach with a world, that I had always felt on the edge of was and is life changing.

I still have to pinch myself when I look at the universally positive feedback I have received in the last 6 months while it has been out there in it’s pilot phase.

For me a great deal of what module one has covered is instinctive, I can’t help but operate that way as my only qualification is the work that I do. I have always run my own business so the hierarchies I encounter are always external….How can I possibly influence the NHS to use my tool from the outside.

In the case of the suicide prevention project and other work around enhancing communications for patients with learning disabilities the turning point in terms of my self efficacy was down to a few people who validated my efforts, and judged me by my thinking not my status or qualifications.

So for me one of the best ways of bringing about change is to “enable” those around me by giving them confidence in their dreams and aspirations as well as having confidence in my own thinking and beliefs.

I think the power of #SHCR is the validation it brings us all, that we are not alone, what we believe in is right and because of what motivates us as humans we “know” that our intentions are in the right place, guided by what is in our hearts.

It is so rewarding to see people who have been hitherto trapped by toxic cultures, colleagues grasping at power and the myriad of obstacles that previously seem insurmountable suddenly see a shaft of light, a new possibility, by allowing their creative minds the space to think out side the box.

Revisiting the school experience for me is a chance to rewrite “what is possible” in my terms.

Family Courts are intimidating places for people with learning disabilities

The Family Court Support toolsCreative Treatment by Jon Bryant based on an idea from The Dudley Advocacy

copyright Jon Bryant 2015

The desire to find a partner in life and to have children is part of what it is to be human, it is a fundamental right we all take for granted. Society is built around the human need to have children and become a family unit, for many it is the single most important ambition in life, to be in a loving relationship and have children. This is a fundamental human right we all take for granted.

Life can be very different if you have a learning disability, society can intervene if there are concerns that your ability to be a competent parent is in doubt.

People with learning disabilities have learning disabilities, they do not by default have a feeling disability and experience the same emotions of joy and sadness that we do in response to events and circumstances in life.

If as a result of a loving and affectionate relationship involving people with learning disabilities a child comes along, this is where society intervenes and triggers the involvement of the state. Its seeks to protect the interests of the child first, will the parents with their support network be fit and able to raise a child with all that entails?

Learning disabilities can be in a range from profound to just a mild intellectual impairment so the State has to make decisions based on an assessment of their competency to provide and care for the child as a family unit.

To better understand how that is for a couple with a learning disability, putting ourselves in their shoes is a very valuable exercise in how best to support them in reaching the right outcomes and life choices.

Let’s imagine you have found someone, a soul mate, the person you want to share your life with, these are universal feelings, no different from a parent living in a remote tribe in the rain forest. It has nothing to do with education or the ability to learn, it is instinctive. The tribe’s people may not have made the connection that sex makes babies, but are still perfectly capable of being great parents with all the joy that brings.

The loss of a child is no less traumatic and life changing because they are uneducated and lead simple lives.

Imagine this…

Your partner becomes pregnant or perhaps you have already had child with whom you have bonded and has become the centre of your world. Then one day you are told you have to go to the Family Courts because “people” have decided that they need to make a decision about your children.

Imagine that Family Court was somewhere in a foreign land, where you did not understand much of the language or the rules, the court from the outside  looked like a prison or police station with all the security guards at the entrance. When the burly uniformed guards after looking for guns, knives and explosives with scanners let you in, then you were taken to a room full of strangers.

There are one or two of the people you do recognise, people who have visited you at home who seemed really friendly and always asked you questions and got you to show them how you did things.  It’s hard to understand everything they say but they seem to be saying that you and your partner are not able to look after your child properly even with the help you get.

In the room which is totally unfamiliar and scary, as it has nothing comforting or homely around it reminds you of a hospital, but smells very different, there is also a person called the Judge, you remember from the TV that Judges lock nasty people up in prison for doing bad things, you get very anxious that perhaps you have done something wrong.

By now you’re very nervous, unsettled, struggling to understand what people are saying and when someone asks you a question all the strangers in the room stare at you.  Your mouth goes dry, you feel shaky and unhappy. You know what you say seems to be important to everyone but the whole experience has left you so anxious you can’t find the right words, after all you have never spoken in public before. Your are scared that  if you said the wrong thing they will take your child away, or maybe stop you seeing your best friend in the world.

Be honest if this happened to you tomorrow in a foreign court in a foreign land with laws and processes you were unfamiliar with how frightening would that be?

How well you be able to “speak for yourself” in such an intimidating set of circumstances? 

How would you feel if in not being able to express yourself because you were petrified and confused, meant your baby or toddler was as a result taken from you forever? Even if you were OK about it how do you console your distraught partner.

Our Aims

This project seeks to address the issues raised above, Family Courts frequently have to make rulings on the fitness of couples with learning disabilities to bring up children and this can result in children being removed.

A vital part of that decision making process is the Judge weighing up the information provided by social workers and carers, gaining some insight into the parents themselves, their life circumstances, aspirations, understanding and capabilities.

There will be occasions where the parent’s contribution to the proceedings will directly affect the final outcome, if you couldn't say what you wanted to when it mattered.

Family Court or Fortress?

Family Courts deal with family matter, so are already very different from other courts setting and much has been done to make them as “unintimidating” as possible so they are typically less formal.

However for a person with a learning disability just the building itself may appear deeply intimidating. What you and I accept as part of everyday life  by way of burly uniformed security guards, with their squealing hand held metal detectors and security arches we have to walk through one at a time to enter buildings is totally alien and frightening for them.

So just getting in to the Family Court building will challenge some in extreme ways that it’s very hard for us to comprehend, ask those with a fear of flying or agoraphobia about the profound ways their ”phobias” affect them, this is no different.

Awareness and understanding

It’s fair to say that virtually everyone attending a Family Court has good comprehension of why they having to go there, what has lead to it, what is to be ruled on, and what the likely outcomes might be dependent on the Judge’s ruling be they good or bad.

For a couple with learning disabilities gaining this understanding of the process is a challenge in itself, this is another area the tools will address. Booklets in Easy Read format are in our opinion helpful but there is a far more effective and comprehensive approach we are promoting.

In order to make Family Courts less intimidating and more learning disability friendly there are many things to address, it is a process of education and familarisation not confined the just the parents attending court.

The aims of this project go beyond the parents to the Courts themselves, rising awareness and educating ALL court staff from the security people to the Judge about the things they can do to make the visit to the Court a less stressful and intimidating experience for the parents.

A good model for this is what cinemas have done to make movies accessible and autism friendly. The screenings take in to account the things autistic people experience and react badly to, so lights are left on, soundtracks are turned down and if they wish they can spend time in the cinema prior to the screening to become at ease with their surroundings.

These are simple measures that cost virtually nothing, are easy to implements and utterly transform the moving going experience for the autistic person allowing them perhaps for the first time in their lives to see the movies their friends have.

The unfamiliar and unknown is far more stressful for many people with learning disabilities, so familiarisation is a corner stone of our approach.

Probable Format

At this early stage prior to research we envisage the tools will come in the form of a downloadable “app” with access to the various video elements. It may also be made to work on a menu driven DVD. The production format would allow us to add bespoke media to personalize it to the Family Court in the borough.

To make the tools properly accessible for the parents I will be drawing on my experience in creating and using visual languages to enhance communications of complex subjects for learning disabled people as well as many years in mainstream video production and direction.

The recourses we want to create have two objectives and two audiences.

1)    To, train and facilitate Family Court staff to make the courts and the court proceedings less intimidating and more accessible for learning disabled parents.

2)    To provide tools that all the agencies involved (social workers etc) in the lives of the parents, including their carers and families. It would be used prior to the hearing and also on the day to support and  familiarise the parents making the unknown a known and to help them feel safe and at ease to “speak for themselves in court” and to arrive there with an understanding of the process. The other important job is to ensure that the strange surroundings and security do not overwhelm them before events have even begun.

For the Parents

By producing a range of short informal video interviews featuring a Judge, court staff including security people who will talk about their jobs, they become familiar, reassuring the viewer that they are real people who want to help.

“I am the security man our job is to make sure you are safe while you are here, keep your eye open for my smiley face badge, here is my scanner I call him Rover after my dog” ….“I am the judge we are not scary people, I am always very friendly to speak to and I really do want to listen to what you have to say, so if you are nervous I understand I won’t rush you I am here to help as I want what is best for you”

For the court staff

This will be a short video based programme designed to convey how the whole experience of a day in court is experienced by people with learning disabilities and the things they can do to help, like smiling, taking a bit more time to explain things, and possibly overcoming a little stigma en route.

Practical Measures

I am developing a range of concepts where little things could be done, maybe the Security Guard wears a smiley face badge, the portable scanner has a name, the judge and court staff and others present each have a card in front to them, not names but colours and shapes about postcard size. These will tie back into the interviews where the card will be established so the parents know the red triangle is the Judge, the green square is the social worker etc.

They will be established early on within the interviews as little reassurances.  It will be easy for the advocate of social worker to have a simple map on paper or a tablet so that the parents understand who is who within the courtroom when they are speaking.

Production

On the filming side we need to shoot a range of interviews, the judge for example might benefit from being interviewed at home, informally over a cup of tea in the kitchen, this will help the viewer see that they are just regular people who have a job called “Judge”.  Court staff might take us on an informal tour of the court room so people know what to expect, perhaps the enlightened courts would allow access prior to parents appearing for them to overcome some of the fears and feel more at ease.

The second part of the filming might be with the parents with learning disabilities and people in their lives talking about some of the things they struggle with, I want to let court staff see life through their eyes to engender empathy and understanding.

We want them to “own” the responsibility as a team to make their court building learning disabled friendly. With a little planning I am sure having allotted times in their schedule where cases involving learning disabled people are heard would be the best way forwards in the interest of all parties.

The APP, we need this to work on iPads, tablets and laptops, and with or without an internet connection.  The tool itself is not complex in structure nor is it feature rich, it needs to work for all, so a person with a mild learning disability should be able to use it independently. Or if help is needed work through it with their social worker, support team carers or family who may not always be skilled at such things. Most people can use a DVD.

copyright Jon Bryant 2015