#LDWeek19 #ListenToMe Listening to feedback, concerns and complaints – Ask Listen Do

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For this years Learning Disability Awareness Week, PBS4 are focussing on how we ensure people with learning disabilities and their families are heard.

We have been fortunate to be stakeholders in NHS England’s Ask Listen Do project. You can find resources from this project here.

The project has come about as too often people with learning disabilities and their families report that they raise things with organisations, but nothing changes, and they are not listened to. This needs to change.

In all industries the phrase “the customer is always right” is commonly used. Why do people with learning disabilities and their families experience that they are not treated in this way? Perhaps it is to do with the by-proxy way that support is commissioned, meaning the customer status is not given to people receiving the support but given to the people who commission the service instead? Maybe because people who need support are not seen as understanding why things have to be done in a certain way because of their learning disability? Perhaps the families of people who need support are seen as “interfering”, or a problem, or that their views aren’t relevant as their child is now an adult? Whatever the reason, it needs to be challenged and the views of people and their families need to be heard.

If feedback is listened to, it prevents it becoming a concern, and if concerns are responded to it prevents it being a complaint. Whatever feedback is received an underpinning principle of Ask Listen Do is that all feedback should be positively received. Organisations should be as pleased to receive a complaint as they are a compliment. If someone is able to tell you what is not working for them you can know what you didn’t know before and you can do something about it.

Simply put, the basic principles of Ask Listen Do are:

Ask – Organisations should actively seek and encourage feedback from people who receive their services, and other relevant stakeholders such as family members.

Listen – When you get feedback it should be welcomed, fully listened to, and investigated if needed.

Do – Organisations should demonstrate what they have done in response to this feedback and show how the feedback is helping their organisation to develop.

PBS4 has recently updated its “feedback, concerns, and complaints policy” to ensure the principles of Ask Listen Do are firmly embedded in what we do. We have shared this with our managers who are in the process of cascading this through their teams. We are just finalising easier read complaints leaflets and information for families on making complaints. These will be shared with all people we support and their families, and will be available on our website by the end of June. We genuinely want to hear about concerns and complaints and we hope that these efforts increase peoples confidence in doing so, and that our desire for feedback is seen throughout the whole organisation.

PBS, ABA, and Neurodiversity

For a few years now, I have been approached on Twitter and other social media platforms by people who describe themselves as Neurodiverse, or #actuallyautistic. For those who have experienced or witnessed these conversations you have probably noticed that communications can be excessive and offensive. If you haven’t experienced this faithmummy’s blog gives a good description here of a parents experience.

From my experience, no matter what I say it is wrong so I have stopped engaging in conversations with them. They have made extraordinary claims about the things I do without actually knowing anything that I do. These have included claims of abuse and maltreatment of people I support that they have absolutely no knowledge of. I refuse to ignore their interactions, as knowing social media if their comments are left unchallenged they only go to reinforce themselves as their followers have similar views and therefore they self maintain this behaviour. I feel leaving their comments unresponded to or unchallenged only increases the likelihood these interactions will increase to vulnerable parents.

I take no offence in their comments as I have confidence in what I do. However, I am aware that not everyone who sees my responses will know the whole conversation, only the latest tweet. Some have misread my responses and do not understand all of the background conversation that has gone on with this. I wanted to attempt to put something here as an explanation about what their key issues are with me and what I feel are the facts behind this.

PBS is ABA in disguise

Their biggest issue by far is that PBS is underpinned by the science of ABA. From their perspective ABA is only early intensive behavioural interventions, and their understanding of this is it is 40 hours per week sat across a desk doing repetitive tasks for a token economy (discrete trial training). They feel this is abusive to autistic people and is an attempt to “cure” their autism. So in their view, if PBS is ABA then ABA is abusive so PBS must be abusive too.

In reality, early intensive behavioural interventions are broader than 40 hours of discrete trial training. It is not an attempt to cure autism, but an approach to build skills and independence and the skills targeted are those that are important to that person. I personally do not believe it to be abusive, but everyone is entitled to their own opinion. The science of ABA is simply the science of behaviour. It underpins early intensive behavioural interventions but it is so much broader than this.

As with any professional field, there will be practitioners out there who are/have misapplied early intensive behavioural interventions. For people who report their experiences as abusive I do not contest their experience and it is awful that this was their experience. We know some foolish services have pedalled this as a “cure” to autism, which is appalling. Equally we know a lot of “PBS services” do not use evidence based PBS with competent practitioners, and the PBS they provide is poor quality. From my perspective, this further strengthens the need for appropriately trained and regulated practitioners so as accountability can be upheld and practice is delivered to a code of conduct. It is not ok for unregulated, poorly qualified people to claim to deliver behavioural interventions, which if misapplied can be harmful. If they are regulated then the regulating body can police abusive practice and prevent it from continuing.

Trying to “cure” my autism is trying to deny who I am

The #actuallyautistic community see their autism as their identity. It is who they are. The notion that anyone is trying to “cure” autism is offensive because it is part of who they are. Aligned to the social model of disability, it is not their autism that is disabling but it is society not being accessible, and attitudes and approaches that are disabling. When a parent says something like “I wish I could take his autism away” this is seen as a direct attack on them and saying they want to eliminate who they are.

We cannot say whether someone else has a disability. It is totally for the person to decide whether they have a disability or not. Similarities can be seen to ex-servicemen who may have lost limbs but would deny that they are disabled. Autism in itself is not a disability. If the person feels that they are unable to do things because of their autism then they may class themselves as having a disability, but many people with autism would not agree their autism is disabling.

ABA is not a cure for autism. Any claims for a “cure” to autism should be sense checked for quackery. PBS uses the science of ABA to understand the function/purpose of behaviour and instead of simply being focussed on reducing behaviours that we find challenging (as some approaches to challenging behaviour do) PBS looks at the function instead and how we can increase skills to meet this purpose in a better way. We are only concerned with adding things to peoples lives, and those things must be important to that person.

We know better than anyone what every autistic person needs

This is possibly the most challenging aspect of the interactions on social media. I have seen parents being told that they know better than their parents what is right for their child as they are autistic and their parents are not.

We know that autism is experienced very differently by everyone who has it. We know that there is not one thing that works for everyone with autism. The lives and the experiences of someone who has an average or high intelligence, who verbally communicates, and has autism will be very different to someone who has a learning disability, communicates in alternative ways to using verbal words, and has autism. If you haven’t lived in their shoes then you cannot claim to speak for them.

The difference extends to the language used. The #actuallyautistic community generally prefer the term “autistic people” as they see their autism as a key part of their identity and see the “people first” movement as disempowering and supporting the view that autism is a problem. The learning disability community in general prefer the “people first” terminology and would use the language “people with autism”. This is to reflect that we see the person before we see their disability and all people should be treated equally. If you see autism as your identity and not a disability then you can see how the people first language can be offensive. Both approaches to language have their pros and cons and ultimately it is for the person to decide what they find respectful and empowering.

In summary

I have been the focus of extensive tweets from the #actuallyautistic community due to promoting quality PBS. This offends them as they see PBS as being the same thing as early intensive behavioural interventions. These interventions are frequently described as ABA, ABA is actually the name of the science that PBS is based on and does not describe any particular approach. ABA is seen as offensive to autism as there have been some foolish services that have tried to pedal ABA as a “cure” to autism. For them, trying to cure autism is trying to take away from them who they are.

This misunderstanding has led to me receiving extensive and accusatory comments, as many other practitioners and parents have received. I don’t think ignoring this is the answer, but there is limited point in attempting to explain the reality as this will not be listened to. On social media you may only see the latest tweet/post and not the whole conversation. It is likely you will see the characteristics of the responses I receive in direct response to this blog. If you see any tweets from anyone that seem out of character keep in mind that you may only be seeing the latest in a long, complex conversation.

Debrief for family’s

By Jen Fookes

Incidents of behaviour that challenge can often leave staff feeling emotional, shocked, stressed and traumatised.

Debriefing systems for the individual and for support staff after an incident can be a valuable process. Offering support, understanding the behaviour and identifying needs. From lessons learnt support interventions and training to increase skills can be put in place to reduce or avoid future episodes. Supporting the wellbeing of staff means less sick leave, burnout and lower staff turnover. And a happier and more confident staff team.

But spare a thought for the families. They possibly will have had years and years of such behaviour.  With no support or training. This can have a significant emotional impact of their mental wellbeing and quality of life. Leaving families feeling vulnerable, isolated and worn down.

As a mother I have been attacked numerous times, knocked out and bones broken. I’ve witnessed my sons potentially life threatening self-injury, unable to do anything for years. Long term stress and anxiety was just a way of life for me, developing my own ways of dealing with it. Alongside this I had to fight to get the appropriate services he deserved.

Recently my son’s new provider offered me my first ever debriefing session. This helped me to destress after an incident. Helped me to organise my thoughts of how I could avoid the incident happening again. But ultimately, I felt – supported and respected as a parent. I was a valuable part of a team, working together to give my son consistency and the support he needs.

Why I am starting a @WeHateSpoons troll account

We all know there are lovers of Applied Behaviour Analysis and haters. Everyone is entitled to their own views and most people can accept some people think differently to them.

Today I have been having a very interesting chat with a twitter account by the name of ABA Controversy UK – @abaukdiscussion It really doesn’t matter what I said it would be replied with anger and challenge.

Their hatred towards ABA is so deep rooted that they have set up a twitter account to facelessly troll anything pro-ABA out there. If there is anything out there anti ABA it is circulated as gospel. Anything pro ABA is hung up as ridicule. Any questions raised responded with anger and hostility and no clear answers when questions to them are made. This gets people who agree with them to reinforce what they say, and avoids negativity from any other perspectives there may be out there so they are self assured they are right. Another good angle taken is to respond to tweets as “we…” so as it looks like a group of people are pressing the keys. Sadly this is the reality for most of us on twitter. We read what people who think the same as us think and therefore are reassured we must be right. If we don’t like what people say we unfollow or block.

To dedicate so much time and effort into shouting down ABA there must be a driver. Some tweets are suggesting that they may have autism themselves. Perhaps they have had personal experience of ABA that they didn’t like. I don’t know. I’ve tried to approach my discussions with them with an open and inquisitive mind but they seem polarised. To be dedicated to something you really believe is one thing, but I’ve never seen being dedicated to a disbelief with such commitment (anyone who is dreaming of starting a “there is no Santa” group right now should be ashamed of themselves)

I get that there are divides – religion, nationality, gender are the common headline ones. We might disagree about which political party we prefer, brexit or remain, BCFC or Villa, Take That or East 17. Whatever it is, there are common divides. The usual standpoint is my thing is better than yours. This account isn’t that, it’s just “your thing is rubbish”. Isn’t that akin to what bullies do? They are arguing against something but what are they arguing for? (I am still waiting for an explanation of how why is different to function)

What makes me really sad about this is that it is a complete extreme view about ABA. It’s not unique to this account but it is very sad.

ABA is nothing more than the science of behaviour. It’s not good, it’s not bad, it’s not right, it’s not wrong, it’s not angelic, it’s not evil. It’s just a way of understanding behaviour. It’s just a thing.

4765B9C2-19BB-49E7-AE0D-E9EBB366211EA spoon is just a thing too. Generally spoons do good. They stir your tea, help you eat yoghurt, soup, cereal. You can balance them on your nose. See yourself upside down in them, play music with them. Generally a very useful thing.  Sometimes spoons can be used for evil. If you don’t believe me just ask Richard Gale

Now if you have seriously just wasted 10 minutes of your life watching that as I have you will now understand why I am starting my @WeHateSpoons troll account. If that is my only perspective on spoons then spoons are evil and I want to make sure the world knows about it.

The truth is the spoon isn’t evil. There might be some people who use spoons to do evil things. But there are plenty of people out there who use spoons for good every day.

ABA is no different. ABA is just a thing. Yep you can find examples of people doing bad things with ABA. Yep some people might disagree with Some ABA approaches and they are entitled to that view. But ABA is much bigger than these things. It is all around us. It is behind every advertising campaign, underpinning what every teacher does in school, every parent does raising their child. There is use in mental health treatments, addiction therapy, pet training, organisation management, it’s behind the healthy eating programmes in all schools now and underpins recycling and green policy initiatives. There are many different interventions that are either solely underpinned by ABA or ABA is key to its working – Positive Behaviour Support, Cognitive Behaviour Therapy, Acceptance and Commitment Therapy, Organisational Behaviour Management, dialectical behaviour therapy and so on.

I’m not denying people have had bad experience of ABA. I’m not saying that people are wrong when they disagree with what they understand ABA to mean. My point here is only that ABA is just a spoon. It is neither good or bad. If your experience of ABA is bad then who am I to say your view is wrong. But that bad experience of ABA may not be everyone’s experience of ABA. Some people use spoons differently.

It’s not just quality of life

You will no doubt have heard someone say Positive Behaviour Support is all about improving quality of life. “We just listened to what he wanted…” or “We did things his way and now we don’t need to restrain him” are some of the common themes you will hear in this perspective.

I agree without a doubt that doing things the way that person wants and improving quality of life are core components of PBS. But I disagree this on its own is not enough to be Positive Behaviour Support. Here’s why.

If you aren’t doing this then what are you doing!

Are there really approaches out there that don’t listen to people, try to do things their way, and try to improve quality of life? How is this any different to any other approach that is out there? If you are in the health or social care profession and these are not your goals you are in the wrong career. It is also something that is very easy to say you are doing but difficult to prove.

When we are saying we are improving people’s lives are we doing it to our beliefs of what is good or theirs? How do we know it is what they consider good if they cannot tell us?

lack of respect for people who are experiencing challenges. 

If the notion is that when people are listened to and their quality of life is good they are not challenging, then the assumption is that if someone is challenging us we obviously aren’t listening and are not trying to improve quality of life.

I have worked with many families and teams who have been challenged. Usually, they are doing their very best in a very difficult situation. If you are a parent who is challenged by your child’s behaviour and you know if you ask for help they will come in and tell you that you are obviously not listening to him enough or you should just try to make his life a bit better would you ask for help?

PBS is more than that

I see PBS as being on a spectrum of interventions. Person Centred Support is a values based approach to supporting people with learning disabilities that focuses on listening to people and improving their quality of life. I would estimate that for around 80% of people whose behaviour challenges others Person Centred Support will address this.

There are some people for whom person centred approaches alone would lead to people rocking in the corner in the name of “choice”. Some people need additional support and encouragement to sensitively try new things, to experience success, and increase occupation. For many of these people Active Support alongside Person Centred Support is needed.

And finally there are a small number of people whose behaviour is challenging their supports to a level that engaging in activities is not easy. In this instance PBS and Active Support and Person Centred Approaches are needed. You cannot do PBS without Person Centred Approaches.

Multi Elimental

PBS needs to be based on the science of behaviour and must be multi elemental.

Firstly we need to understand the function. Sometimes this is simple but other times a detailed functional behaviour assessment is required to properly understand the function of a behaviour. When we understand that function we can then plan how we can support the person to meet that function in a better way.

There is nothing prescriptive about what should or shouldn’t be in a multi elemental approach. However, they are commonly arranged with the following headings:

  • Teaching new skills – giving people better ways of getting what they want
  • Environmental interventions – changes to the physical environment and people in it (approaches by support) to make the new behaviours more likely and the environment more supportive
  • Focussed strategies – reinforcement is key to learning for all of us. People with learning disabilities sometimes need support in understanding reinforcements are connected to actions so we make plans to ensure reinforcement is effective
  • Proactive Strategies – how we avoid the behaviours that challenge us from occurring
  • Active Strategies – how do we respond to early warning signs that behaviours that challenge us may occur, or how do we manage risks in high risk situations that we know are likely to lead to these behaviours
  • Reactive strategies – how do we respond when the behaviours that challenge us are occurring to end the situation as quickly and safely as possible.

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A moral decision

Positive Behaviour Support is using the word “Positive” to mean “adding”. People with learning disabilities have learnt fewer behaviours than us to meet their needs. What right do we have to reduce or stop behaviours when behaviours that are effective for them are challenging us? In PBS we are choosing to “add” behaviours instead of reducing them.

Understanding the function of behaviour, changing our focus away from reducing the behaviour to meeting the function instead, and choosing to add behaviours instead of take behaviours away is central to what PBS is about. You can improve quality of life without doing this, but you are not delivering PBS if Quality of life is your only focus.

A different way of “working” #LDWeek17 #TransformingCare #TransformingLives

Keith Jarvis, our Service Development Worker describes how PBS4 is changing the lives of people we employ:

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I would like to tell you about another side of PBS, a side that is sometimes forgotten, But is an important part of the support we offer.

That is the journey of our Enablement Assistants, as they see the effect of PBS working. How PBS4 not only changes the lives of the people we support but of the people giving the support.

I came to PBS4 from a care home, I had been in care for around 8 years when I started with PBS4. I came because it was a new company, with opportunities, but I also found that the company is not an in the box organisation.

As I started with the company, it was a little difficult to adjust to doing things the PBS4 way, thinking about the individual and shaping the day, around them and their needs, rather than the company.

As I have developed and progressed within the company, it has been amazing to see how the people we support have developed. I have seen and been part of services joining PBS4 and services progressing, to where the individuals needs have been enhanced so much that they have a staff reduction.

As part of the PBS4 management team, I have seen our Enablement Assistants develop with them, our culture of nurture, shaping, support and Training, means that our staff come to us with the solutions, come to us with a plan for something. They have the confidence to step outside the box, and challenge the system.

We are very privileged to have an amazing team of enablement assistants that work to improve the life of the individuals, in an individual way.

I for one am very grateful for the two way progress PBS4 has had on my life and my way of thinking.

This is LD week, and we celebrate the amazing achievements they have made, but I feel we also need to celebrate the individuals that have supported them to get there as well.

My training #LDWeek17 #TransformingCare #TransformingLives

Ian is a man we support. He was involved in his teams induction training. Here is his feedback

IMG_1553What went well?

It was beneficial for me and the staff. I found it indicated to me that the staff needed a lot of training, which they got. Now I have the right staff and that’s why I’m getting on with them more.

Proact Scip was good for me and I can see it will help the staff to deal with situations. I love the way that the staff can direct you to places and it’s not like hospital where they just put you on the floor and hurt you. Jonathan taught everyone properly and there was one staff that didn’t take it seriously. The other staff took it seriously.

I loved being involved in the Proact Scip because in the hospital I wasn’t allowed to take part. I got a feeling that I was actually in control and the staff were in control. I feel like the moves that were taught would calm me down.

What did you not like?

I couldn’t concentrate for a long time. There was too much information for me.

I didn’t like to sit through the whole day. I know it was beneficial for me as well, but I can’t take in loads of information and I felt overwhelmed which is why I kept interrupting.

Ideas for next time?

Longer breaks. I would like it if my parents took me out for the day. Maybe they could stay for a little bit so they can hear, and I can go out in the afternoon with them because this is when I struggle.

I would like if staff took the information and put it into pictures because of my autism and my learning disabilities, I understand it more if it’s in pictures, even if it’s little figurines (cartoons) in the picture.

A fresh start #LDWeek17 #TransformingCare #TransformingLives

For #LDWeek17 here is how our Enablement Assistant Hilary Taylor-McCaffey is finding her role:

I wanted to share a little bit about my experiences with Ian so far.
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I have worked in care for the past three and a half years. Before that I went through job after job, constantly looking for something rewarding and engaging. I constantly felt like I wasn’t making a difference, and so I would move onto the next job looking for that missing spark.
I recently bought a house with my husband and we made the plans to move house. Part of those plans was for me to change jobs, and I was keen to look for something similar to what I was already doing. I answered an ad to work for PBS4 and was lucky enough to meet Ian on the day that I interviewed. We had a great chat and he had great banter, and I was immediately intrigued to learn more about him.
When I started working with Ian I had big plans for him. I suppose I had a sense that I would be walking into his life to help him in some way, and those illusions were soon dashed! Quite the opposite became true: I found I was learning more from Ian than he was learning from me. Instead of me showing Ian how to fit into the world, Ian was showing me how the world should fit around him.
In the few short months I have been working with Ian, he has taught me to meet the world head-on. In this age of self-absorption, Ian reminded me how important it was to talk to people, to make friends on the bus, or just start a conversation with someone in a waiting room.
He taught me to not fear new situations, and to express your feelings in a way where people would listen.
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I could go on and on! But I think I’ve summed it up enough. I thought I was getting into care to help other people, but I had no idea how much the people I support would be helping me.

#TransformingCare #TransformingLives #LDWeek17 Improving Communication

Our Enablement Leader, Lisa Malia, shares her experience:

I do a lot of work with PECS (Picture Exchange Communication Systems) with a person we support.
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We subscribe to a system called Communicate In Print from Widget. I have made lots of symbols available for the person we support by identifying what is important to her and what she would like to choose. I printed the pictures, laminated them, and organised them in folders so as the person we support and her team know where they are and they can find them quickly. We also have put up a white board in her living room and put the most used ones all around the edges so as anyone can find them quickly.
I introduced them to morning routines using now and next to build consistency, and use them on a choice board for activities and meals.
In October I went around the person’s home and placed PECS on cupboards, rooms and draws. Her routine is for her team members to hold out 2 items of clothing for her to choose from in the morning. Since sorting her draws onto individual items and placing PECS on the draws, some days she will get her clothing for the day including underwear and place them in a pile outside her bathroom with no support before day staff arrive on shift. She does this completely independently now because the pictures have given her structure and predictability. She has never done this before and she is now more in control of her life.
I love the fact PECS have given her independence, consistent morning routines, and clear choices she makes herself. She is in control!

An invisible difficulty

By Jonathan Beebee

Somewhen in the near future will be a landmark time for me. I am approaching the 19th anniversary of my head injury. It happened when I was 19 so I will have lived as long after my head injury as I lived before it (no hiding my age now)

The fact I am living at all is incredible. My family were told I would die when it happened. When the doctors realised I wouldn’t die they told my parents I would be a “cabbage” (great choice of words) and that I would be dependent on them for everything. That was my future. Thankfully they were wrong. I have taken strength from what happened and dedicated myself to ensure people who do need support get high quality support. Turning the bad to good.

Most people I meet now have no idea that I had a head injury. Only the people who know me well know how this continues to affect me on a daily basis. Whether it actually does affect me or not is something I will probably never know. When I forget something is this because of my head injury or is it just a normal thing to happen? Do I forget things more than others? There is no way of truly knowing. Here are some of the things I notice that I think are a result of my head injury that most people probably don’t notice.

I do have a terrible short term memory. When I meet new people I can’t remember names. When I am told to do something if it isn’t written down it’s forgotten. It’s not that I have no memory but I have to try really hard to get things from short term to long term memory and if I haven’t emailed myself about it I won’t remember.

I have some type of dysfluency. The words I think of saying are not always the words that come out my mouth. Sometimes the words that come out will be completely random. Sometimes they will be starting with the right letter but completely the wrong word. Sometimes it will be another word associated but completely wrong. Most of the time I can brush this off with ease. However I have noticed it is getting worse.

I also have word finding difficulties. This can be similar to other people but I can stutter, stumble, and just freeze in conversations. This was worse at the time of my head injury. It’s still present but I can cope with it. A good coping strategy for this is to look thoughtful.

I cannot do multi-tasking at all. If you haven’t got my full attention I probably have no idea what you are talking about. I need to put a lot of energy into focussing on something. When all my energy is going on one thing I can’t share that attention with anything else.

I am impulsive. I will jump at a decision and take risks without thinking things through. Most of the time this is more of a benefit than a problem.

There is something about rules that means I have to try and break them, or at least push them as far as I can. If I am told I can’t do something I will go out of my way to do it, even if I don’t really want to. Though this was probably something I did before my head injury if I am honest.

I have a quick temper. If something isn’t right I can go from being cool, calm and collected to totally full of anger in seconds and I don’t let things go. Before my head injury I remember myself as being very passive and not getting angry about anything. I think my passivity was part of the reason I got the head injury in the first place, which may be why I avoid being passive now when I could let things go.

Some things that should affect me emotionally I can be completely numb to. I know I should feel something but I don’t. It’s not that I don’t care, just it isn’t affecting me.

There has been some form of central nervous system problem since my head injury. My legs can go into random tremors is the main issue. This is happening less now than it did but it’s still there.

I probably am too open about things that I should keep personal. Probably like most the things I’ve said here. I often say things that I probably should regret and should have kept to myself. Thank goodness I am numb to feeling shame at what I have said, well most of the time. I do recognise mistakes.

Most of these things I have used to my advantage. My impulsivity has made me take risks, my anger for things that are wrong has led to me speaking loud about what I am passionate about. The attention I need to put in to focussing on things means when I am determined to do something it has 100% commitment. I have benefitted from these difficulties as much as I have struggled. Well most of the time. When things are going wrong it’s not easy.

I will never know for sure if what I am experiencing now is from the head injury or just part of being a normal human being. I know I think about it every day. I know I struggle with it. An invisible difficulty that is so invisible even I’m not sure if it’s there.

I feel huge pride at the difference I have made for people with learning disabilities, and none of this would have happened if my head injury hadn’t happened. It wouldn’t be happening if I didn’t continue to think that person being supported could be me. I am proud of my head injury. But that doesn’t mean it doesn’t cause me problems.

Next week is Learning Disability Awareness Week. This is always a great opportunity to raise the profile of the lives of the people we support. Personally I will be thinking of everyone out there with a hidden disability. The person whose needs aren’t instantly seen by everyone. The person who people make assumptions about but they don’t have a clue what is happening for them “behind the scenes”.

For PBS4 we will be focussing on the Transforming Care agenda. The title Transforming Care meets our ambitions. We want to shake up how social care is delivered and see if it can be done differently. We want people with learning disabilities to receive dedicated, personalised, evidence based support. We want to also focus on Transforming Lives. On how the support we are developing is making a difference to the lives of people we support. Some of the things we are doing are huge. Some may be seen as tiny on the scale of things but are enormous for that person.

We will aim to share a blog a day next week on #TransformingCareTransformingLives (not the easiest hashtag for twitter – feel free to suggest alternatives) sharing the successes we have achieved. We welcome others to join us and share their successes too.