Sunday 23 October 2016

Using non-verbal communication, pausing & pacing to seek & share emotional reactions

Here I am working with Harry, age 13, who has a great sense of humour and is really fun to work with.  I am supporting Harry to share his emotional reaction and seek my emotional reaction to things that happen naturally during our interaction.  To do this, I am slowing my pace, making judicious use of pausing and using non-verbal communication to increase Harry's opportunities to seek and share emotional reactions.

Why is this important?  Another person's emotional reaction tells us how they feel and what they are thinking about something.  We can then use this information to help us to adapt what we are doing to: keep the interaction on track; get it back on track; improve what we are doing together; clarify misunderstandings; celebrate our successes; have fun.  Another's emotional reactions would also trigger us to be wary or confident in any given scenario as well as motivating us just to share a common experience for the purpose of mutual enjoyment. Those are just some examples.

My analysis is in black and Sharon's comments are in blue.  Sharon is the external RDI Consultant who works with us at Bright Futures School.

Clip 1 - I set out our objective of making the card

Off camera - Harry shares something with me about a meme and we laugh about it.

Clip 2 - I finish setting out the framework and then model using just a little glue. You social reference Harry here too as you show him, seeking his response - 'is it good enough?'  He responds with a thumbs up. 

Clip 3 - I non-verbally show Harry where on the page I am going to put the head. I finish my turn and he takes his.  I am including Harry in my thinking & decision making even though he is doing nothing more than watching.

He uses gesture to let me know he needs more glue. I use gesture to confirm. Very nicely done, you are having a great non-verbal conversation.   I make a joke of the glue tube noises in order to 'spice it up' a bit and get some emotion-sharing going sharing and seeking emotional reactions - great freeze frame 1:53.  I use NVC to remind Harry that we only need a little glue. This comes across as sharing your thinking rather than instructing Harry to do anything. 

Harry starts to try to tell me something and references for my reaction. I use the reference to remind him of our no talking challenge and reinforce with a larger scaffold of 'we can talk after' so that he knows he will get a chance to tell me.

Clip 4 - I verbally spotlight the care he is taking.  I use words because this is an important spotlight (as he can be slapdash with crafts) and there is no way really to tell him that non-verbally.  Harry uses non-verbal communication (NVC) to remind me not to talk :) ha ha!  I try to give NVC feedback on the care he is taking.  As he picks up the head to place it, I scaffold by showing him with my card, and then on his card, where to place the head. I don't think he needed this level of scaffolding, the showing of yours yes, but the pointing out no, as I think he already knew what he was going to do???.  I use prosody to feed back on his good placing.

Clip 5 - Harry checks in to see my emotional reaction to his efforts I would recommend waiting for his shift of gaze before you give your feedback on his placing. I do a thumbs up. I model that we will be doing the ears next. He is yawning and I use NVC to share around that. He smiles.  I can't remember where I read this as it was a long time ago but yawning can actually be a sign of feeling relaxed and competent & he certainly looks this way to me.

Clip 6 - Harry glues really carefully. I use prosody ('ooooh') to spotlight this. I scaffold for Harry where to place the ear by showing him on my card great so you realised that the scaffolding was too high previously & lower it here, good stuff, which he uses by glancing at it twice.  When he has finished, he references to check in with me that his placing is right. I use prosody and gesture (nod) to affirm this.  Zoe your pausing & pacing are spot on here.  You would never think this is a child that can be slapdash here would you!

Clip 7 - Harry points to the eyes, non-verbally suggesting what’s next.  I pick up the eye patch and look to him for his affirmation. Social referencing Harry for his thoughts. He nods. I use NVC to build anticipation around the farty squeeze noise and we emotion share around some of the squeezing noises.  When placing the patch, I hover it over the head to engage Harry about whereabouts it should go. He references around this. 

Clip 8 - Harry drops some glue.  I see this as a challenge for him to resolve and take responsibility for. Great stopping yourself from jumping in there! I use prosody to spotlight the challenge. He is concentrating, so I wait. When he's finished, he references to check in and I do a thumbs up, then take the opportunity to use NVC to spotlight the spill again. I look confused, which gives Harry the chance to think about how to resolve it. He gets kitchen roll and I spotlight this good idea with prosody and then a thumbs up when he references. Great stuff, he certainly looks pleased with himself!

Clip 9 - I place 4 eyes on the dogs head as a way to give Harry an opportunity to problem solve.  We have a non-verbal 'conversation' about whether 4 eyes is right and he takes 2 off. First time I've ever seen someone make an X when it's wrong.

Clip 10 - I use prosody (an intake of breath) to spotlight that Harry may have too much glue on the stick. He references and resolves this by moving the stick over to the saucer. And this is his decision, he isn't being told what & how - a great example of you move away from 'getting' to 'inviting'.

Clip 11 - I use a verbal 'pointy' as its difficult to explain with NVC that the pointy bit goes upwards (the point is hard to see).  Harry places the tongue and celebrates with a 'we did it!' – a lovely celebration of our competence.

Where to: Harry did really well with using NVC & this was a great way for the pair of you to converse, so much more interaction taking place.  Think more use of NVC can only be beneficial for him as – with the pausing and pacing - it helps to facilitate the seeking and sharing of emotional reactions.

Tuesday 18 October 2016

Welcome, Saoirse :)

If anyone follows the Bright Futures School updates on facebook, you’ll know that a family has recently moved from Ireland to Oldham so that they could try to get a place at our school for their daughter, Saoirse (pronounced Seer-sha). 

The family took the plunge and moved and we worked together on the information that needed to be submitted for the EHC needs assessment request.  It was agreed by our local SEN Team and panel that Saoirse could be placed at Bright Futures School whilst the EHC needs assessment took place and Saoirse started with us in May 2016.

It’s always a bit hair-raising when a new pupil starts because although you’ve read all the paperwork and maybe even seen video footage of the pupil, you never know for sure whether it’s going to work.  Factor into the equation that this family had moved from another country for a place at our school and…….gulp……no pressure!!

Saoirse is a lovely, bright little girl with masses of potential.  We all love her to bits. She and Lucy are developing a friendship – it is beautiful to watch it unfold as each of the girls takes steps forward in their development.

We have made the decision, as we did with Lucy, to work exclusively on guiding with Saoirse, so she is in her own room doing different guiding activities with a series of different staff.  The objective is to use the guiding framework to support Saoirse to step into her co-regulatory role in a turn-taking pattern.

The first clip is from one of Jo’s initial sessions with Saoirse: they are taking turns to ‘fish’ in early July 2016.

Saoirse knows the concept of turn-taking but struggles to allow Jo to have her turn.  Jo has to control the equipment in order to help Saoirse competently take turns: at different points, Jo moves the fishy board away or puts her hand over it so that the turn-taking pattern isn’t broken.  She also has to verbally set limits when Saoirse tries to go out of turn (not taking on board her communication partner’s needs) by grabbing the fishing rod when it’s Jo’s turn.

An example is at 2.08 when Jo tells Saoirse that it’s her (Jo’s) turn. Saoirse says ‘noooooo’ and Jo has to repeat the framework ‘my turn and then your turn’.  Saoirse then places the rod out of Jo’s reach on the floor and leaves her seat.  Jo waits and after Saoirse has picked up the rod, she holds out her hand for it.  Saoirse makes the decision to come back into the framework and step into her role by giving Jo the rod.  As Jo takes her turn, Saoirse struggles again with not being on her own agenda and reaches for the line.  Jo has to place the line in her hand to show non-verbally that it’s still her turn.  So at this time, Saoirse is experiencing quite a lot of difficulty co-regulating with Jo.

We move now to a clip of me with Saoirse from 22.9.16, some 3 months after the above clip. 

Staff have been working hard on basic turn-taking and you can see that Saoirse is now much improved at stepping into her co-regulatory role (yay!). In this clip, I’ve been tasked by Sharon, our external RDI guru to try to focus on using the ‘sender/receiver’ role set as well as facilitating more experience and emotion-sharing, now that basic turn-taking is established.

My analysis is in black and Sharon’s feedback is in blue.

Prior to this activity, we have been rolling playdough.  Saoirse let me know she’d had enough after about 10 minutes, when she moved away from the table.  I took this as my cue to change the activity, as follows:

Clip 1 - When I state what we're going to make, this seems to motivate Saoirse to re-engage and she returns to the table. As she sits down, I set limits around eating the choc as I think she will struggle not to eat it.  I tell her and show her that there is some that we can eat when we've finished. She repeats 'finished' as if accepting this (and using it to regulate?)

I model breaking up the choc but soon see that this is too hard for her so I change to sender/receiver again, break the choc into single pieces myself and pass the pieces to her to place in the bowl.  Once we have established the pattern, (1:10ish) I pause for her to reference before I pass the choc great stuff.  I continue to do this and there is some lovely referencing :):)  I pull away when she goes to snatch and she continues to reference me and seems to smile....? I'm not sure that the beginning of this isn't more around learned behaviour but as you progress I do think it looks more like social referencing 'are you ready / do you have more?' 

We do more of this pattern and I introduce a chant I think this really helps Saoirse & she seems to be joining in too!  Just has more of a 'we' feel around it.  When we finish, I say we can eat our choc.  She seems not to understand as she moves her hand towards the bowl so I model eating and she eats her choc.

She shares quite a lot of gaze whilst we are eating our choc, which is lovely it sure is, no goals, no aims just sharing the experience.  I say we need to go to the kitchen to melt the choc and she says 'kitchen’ (she is saying a lot more words throughout the school day). We go to the kitchen.  Initially Saoirse seems to react negatively to you saying that 'we can't eat anymore' but then regulates around the need to go to the kitchen, maybe mentioning again the making of the rice cakes helps here too?!?!?.

Clip 2 - I set up for the next role set. I model scooping and we do this. Then I pour.  We have a spill and tidy up. I spotlight Saoirse's good idea re tidying. She gets hold of the bowl so I wait until I see an opportunity to move the bowl away When Saoirse was scooping from the bowl into the cup... I'm not sure she just wasn't a little muddled as to what was happening next, as she quickly adapts. She holds the cup and I pour. Then I reverse the roles. I spotlight Saoirse's helpfulness and then wait until she has finished with the rice crispies on the table.  I pour from cup to bowl and invite Saoirse to pour from jug to cup. I spotlight my change in pouring (JND of height) and say that it’s raining rice crispies.  Saoirse smiles and repeats 'raining' with lovely dynamic gaze. Nice experience sharing.

Saoirse then gets up and is distracted.  I wait. She pours and moves away again. She starts to spin herself.  I wait. When she stops and references, I pour. ok

Off camera - we get the choc.

Clip 3 - I pour the choc in because it’s a bit too hot to give her a role here.  I set limits around licking the spoon at the end (authentic reason = germs).  When she goes to lick, I move the spoon back and say 'mmmm hmmm'.  I spotlight her helpfulness.  I have to keep setting limits around the licking but she manages to stay within them - major progress :):) as she has struggled with this a lot previously. So sweet, she is almost drooling but does well to wait.

Clip 4 - I acknowledge that it’s hard to wait to lick.  Zoe I'm wondering if it would help Saoirse's understanding of 'all done / ready' if you showed her the bowl & stated something along the lines of 'all mixed together now', so she can physically see the difference???
When I am ready, I offer the spoon to Saoirse. I say 'ready' and she says 'ready' and references. I emotion-share my excitement and anticipation.  We lick and I share my thoughts about the choc.  She references quite a lot.  I continue to share my feelings about our mixture.  I spotlight that she has got some rice crispies left and she responds by eating them. Agree again some lovely moments in this tiny piece including Saoirse's yummy noises.

I loved this session. And me....  moving in the right direction!

Where to: Sender/receiver (our turn-taking role set) is working really well - think it's a case of using this in as many different scenarios as possible, so Saoirse continues to grow in her ability to turn take.  She is so much calmer here.

Our underlying aim is to continue to grow the emotional connection & experience sharing across interactions - well on track!

The difference 3 months of guiding makes :)

Friday 19 August 2016

One possible way to get justice for all the dudes?


To date there have been countless cases of people with autism and/or LD being held in ATUs or similar provision where they have been mistreated, neglected and/or abused.  In some cases, this neglect or abuse has shamefully brought about the deaths of young people.

In many cases, the young people were held under a Section 3 of the Mental Health Act, yet they didn’t have mental health conditions – they had autism and/or LD.

Connor Sparrowhawk’s preventable death has (thanks to his family) been subject to the 
most scrutiny and has resulted in:

  • An independent report by Verita, commissioned by Southern Health after a considerable fight by Connor’s family, which found that his death was preventable and was the outcome of a combination of poor leadership and poor care in the unit
  • NHS England commissioning Mazars to investigate Southern Health’s responses to all deaths in their learning disability and mental health provision dating back to 2011.  Amongst other things, the report found: a lack of leadership; inadequate reporting of serious incidents; inadequate investigation protocols including a lack of management and oversight;  lack of systematic approach to learning from deaths; limited involvement of families and carers.
  • An inquest into Connor’s death determining that Connor’s death was contributed to by very serious failings, both in terms of systems in place to ensure adequate assessment, care and risk management of epilepsy in patients with learning disability at STATT (the unit he died in).

Scrutiny and accountability?

The upshot of all of that scrutiny? A mealy mouthed public apology by Southern Health NHS Trust.  No sanctions, no sackings, no public enquiry. 

Other families, such as those of Nico Reed and Thomas Rawnsley, are also still seeking justice.  The 7 Days of Action campaign has recently collated the stories of a further 35 young people who are currently stuck in ATUs.  Each of these families is fighting their own fight in isolation.  An exchange on the 7 Days facebook group earlier today got me thinking about how families might come together to take collective action.

There have been discussions about a group legal action by some of the ‘ATU’ families but I remember being told a couple of year ago by a barrister that the cases were not similar enough to bring a group action……different local authorities and health authorities, different triggers for breaches of human rights etc.

A new idea

What if we could use a different framework – a framework with objectives that were clearly set out, arguably making them measurable and giving us ‘hooks’ to hang accountability on?  One way to do this might be by using the NHS Constitution as the ‘framework’.

Let’s look at said document:

‘The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions’ (my emphasis).

There are 7 key principles.  I have outlined all 7 here but have just provided commentary underneath each of the principles where I think a case could be made that the rights of a group of young people held in ATUs had been breached.  The black text is what appears in the NHS Constitution as explanatory text; the blue text is me making the case for collective breaches.

1. The NHS provides a comprehensive service, available to all

2. Access to NHS services is based on clinical need, not an individual’s ability to pay

3. The NHS aspires to the highest standards of excellence and professionalism

It provides high quality care that is safe, effective and focused on patient experience; in the people it employs, and in the support, education, training and development they receive; in the leadership and management of its organisations; and through its commitment to innovation and to the promotion, conduct and use of research to improve the current and future health and care of the population. Respect, dignity, compassion and care should be at the core of how patients and staff are treated not only because that is the right thing to do but because patient safety, experience and outcomes are all improved when staff are valued, empowered and supported.

‘Safe, effective and focused on patient experience’ and ‘respect, dignity, compassion and care should be at the core of how patients are treated’……..I think it would be possible to make robust cases for all the ATU families that these rights have been breached.
4. The patient will be at the heart of everything the NHS does

It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services.

‘Tailored to the needs and preferences of patients’; ‘patients, families and carers will be involved in and consulted on all decisions about their care and treatment’ and ‘actively encourage feedback and use it to improve its services.’  We can all think of several (most?) cases where those principles have not been upheld. 

5. The NHS works across organisational boundaries

It works in partnership with other organisations in the interest of patients, local communities and the wider population. The NHS is an integrated system of organisations and services bound together by the principles and values reflected in the Constitution. The NHS is committed to working jointly with other local authority services, other public sector organisations and a wide range of private and voluntary sector organisations to provide and deliver improvements in health and wellbeing.

‘Committed to working jointly with other local authority services…….’ Amongst other things, recent discussions on facebook about section 117 agreements not being fulfilled spring to mind here.  Section 117 imposes a duty on health and social services to provide aftercare services to certain patients who have been detained under the Mental Health Act.

6. The NHS is committed to providing best value for taxpayers’ money

It is committed to providing the most effective, fair and sustainable use of finite resources. Public funds for healthcare will be devoted solely to the benefit of the people that the NHS serves.

This one is my absolute favourite.  There is sooooooo much evidence that ATUs do not provide value for money when compared with the total no-brainer alternative of appropriately supported placements in the community near a person’s family.  ‘Effective, fair and sustainable’……..a choice comment from Jim Royle of ‘The Royle Family’ springs to mind.
7. The NHS is accountable to the public, communities and patients that it serves

The NHS is a national service funded through national taxation, and it is the government which sets the framework for the NHS and which is accountable to Parliament for its operation. However, most decisions in the NHS, especially those about the treatment of individuals and the detailed organisation of services, are rightly taken by the local NHS and by patients with their clinicians. The system of responsibility and accountability for taking decisions in the NHS should be transparent and clear to the public, patients and staff. The government will ensure that there is always a clear and up-to-date statement of NHS accountability for this purpose.

So the government is accountable to Parliament for the operation of the NHS.  That’s what it says there in black and white.  Group litigation (judicial review?) of the government, then, as the ultimate accountable body?

The NHS Constitution summarises patients’ legal rights, which include:

Under ‘Access to health services’

You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.

You have the right to expect your NHS to assess the health requirements of your community and to commission and put in place the services to meet those needs as considered necessary, and in the case of public health services commissioned by local authorities, to take steps to improve the health of the local community.

You have the right not to be unlawfully discriminated against in the provision of NHS services including on grounds of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status.

Care and treatment that is appropriate……people with autism and LD being detained under the Mental Health Act when they do not have a mental health condition… is that ‘appropriate’ and ‘meeting need’?  Could a case be made that, because their autism condition was not properly taken into account, all of these young people were unlawfully discriminated against on the basis of their disability?

Under ‘Quality of care and environment’

You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.

You have the right to be cared for in a clean, safe, secure and suitable environment.

You have the right to receive suitable and nutritious food and hydration to sustain good health and wellbeing.

You have the right to expect NHS bodies to monitor, and make efforts to improve continuously, the quality of healthcare they commission or provide. This includes improvements to the safety, effectiveness and experience of services.

Professional standard of care/appropriately qualified and experienced staff/organisation that meets required levels of safety and quality’…………Thomas, Eden, Jack, Connor, Stephanie, Nico, Stephen…………….

Under ‘Nationally approved treatments, drugs and programmes’

You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.

NICE has written several guidelines and a quality standards document on autism.  There are many aspects of these guidelines that have not been adhered to.

Under 'Respect, consent and confidentiality'

You have the right to be treated with dignity and respect, in accordance with your human rights.

You have the right to be protected from abuse and neglect, and care and treatment that is degrading.

You have the right to accept or refuse treatment that is offered to you, and not to be given any physical examination or treatment unless you have given valid consent. If you do not have the capacity to do so, consent must be obtained from a person legally able to act on your behalf, or the treatment must be in your best interests.

You have the right to be given information about the test and treatment options available to you, what they involve and their risks and benefits.

Fed through hatches, restrained physically and chemically, pulled across the floor resulting in carpet burns, a guy with epilepsy, left unsupervised in a bath……………

Under 'Informed choice'

You have the right to transparent, accessible and comparable data on the quality of local healthcare providers, and on outcomes, as compared to others nationally.

You have the right to make choices about the services commissioned by NHS bodies and to information to support these choices. The options available to you will develop over time and depend on your individual needs. Details are set out in the Handbook to the NHS Constitution.

I’m just getting more and more frustrated as this list goes on….transparent data on outcomes that can be compared to others nationally!!  What??!!  Anyone ever seen any of those amongst all the pigs that we are watching flying past…….?

Under 'Involvement in your healthcare and the NHS'

You have the right to be involved in planning and making decisions about your health and care with your care provider or providers, including your end of life care, and to be given information and support to enable you to do this. Where appropriate, this right includes your family and carers. This includes being given the chance to manage your own care and treatment, if appropriate.

You have the right to an open and transparent relationship with the organisation providing your care. You must be told about any safety incident relating to your care which, in the opinion of a healthcare professional, has caused, or could still cause, significant harm or death. You must be given the facts, an apology, and any reasonable support you need.
You have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies, the development and consideration of proposals for changes in the way those services are provided, and in decisions to be made affecting the operation of those services.

An ‘open and transparent relationship with the organisation providing care’.  There are several families that spring to mind immediately whose relationship with the care provider was/is far from transparent.  Instead of information and support, they experienced bullying, lying, threats, intimidation…the polar opposite of what the NHS Constitution sets out.

So if ‘The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions’ does that mean we have multiple collective breaches of the NHS Constitution?  If yes, could redress be sought collectively, or am I totally barking up the wrong tree? 

It feels like if this sort of thing was going to work, someone would have thought of it already.  But you never know....worth a discussion.  Awaiting feedback from friendly and wise legal bods.  Watch this space………