'We shouldn’t underestimate the fundamental importance of remaining compassionate in highly challenging circumstances'

For my Blog this week I just would like to share a (slightly abridged) piece I received from Dr Ruth Berry (Professional Lead for our LYPFT Learning Disability Psychology Team). She wrote this for Learning Disability Awareness Week; I think it speaks to the core of what we need to do, and continue to do better, in care, but equally, across society more generally.

Reflections on working in learning disability services

I’ve worked with people with a learning disability for more than 25 years. For me, the challenges and rewards remain the same and are fundamentally about relationships and values. The resonances with the broader culture are so strong right now as all disadvantaged people fight for the right to be treated as equals.

People with a learning disability really struggle in this fight because it is so hard for them to articulate their position and to be heard. This is especially true for those who have more severe levels of intellectual impairment and additional needs. These are the people whose needs are especially complex and difficult to meet, often resulting in a downward spiral that can result in admission to hospital. Many people outside of Learning Disability services will have heard of one such hospital, Winterbourne View, and the horrendous events there, involving the patients being treated in humiliating and degrading ways. It’s no exaggeration to say that these people were tortured by the staff being paid to care for them. Long reports have been written about the many factors that fed into this abusive situation. For me, a key issue is the dehumanisation of people who are experienced as ‘difficult’ and ‘other’. Once this ‘othering’ has happened, poor and even abusive treatment is legitimised. If we are to resist this pull, we need to be mindful of this tendency to split into groups of ‘them’ and ‘us’ and find ways to remain connected to those people who may, on the surface, feel quite different to us. 

We shouldn’t underestimate the fundamental importance of remaining compassionate in highly challenging circumstances and this is something we can all strive for and support each other in. COVID is amplifying all the tensions, divisions and differentials in privilege that have always existed. The difference now is that they are front and centre and call for us to engage with them, however uncomfortable that might be. 

If there is one maxim to underpin this way of relating it’s to see the person first, not get caught up on the superficial and surface differences. I take hope from knowing there are staff in our organisation who do this day in, day out and can teach us all to keep on reaching out in a curious and compassionate way and to keep trying to do our best for those who are most in need.

Dr Ruth Berry, Consultant Clinical Psychologist & Professional Lead for the Learning Disability Psychology Team.

Today was my last day in direct care!

Today was my last day in direct care (sort of), so I am currently filled with a range of emotions, some positive (I need a rest) and some a bit mixed.

All day I have been a bit reflective on all the things I have seen and experienced, both recently and across all my NHS career dating back to 1984.

But at this moment I would just like to say a big 'thank you' to everyone at Parkwood View: Luke, Jayden, Claire, Diane, Shaun, David, Gurdev, Zoe, Tracy, Hannah, Sharon, Nora, Yasmin, Michael, Gertrude, Leslie, Lorraine, Rachel, Louise, Seema, Stephen, Lynne and Charlotte.

Yes, many thanks to them all for being so accommodating, friendly ... and interactive ... over the last few weeks; I only hope I didn't get in the way too much!

So, I have just 2 weeks of office based work left before my final and official NHS last day - and I keep asking myself now: where did all those years go? But I suppose that there is a lot of truth in the saying "time flies when you're having fun!"

In a few minutes I will be going to work with a very heavy heart ...

In a few minutes I will be going to work with a very heavy heart. The outstanding team of carers that I am currently working with are caring for some of the most vulnerable people in our community. They are doing the direct, hands-on care, of course they still are; but we all have a moral, societal level responsibility for their care and future well-being. 

All of us share in this responsibility, no matter what level of privileged or political power we hold - we must all follow the vital Covid-19 infection control rules (the letter and spirit) as they were presented to us by the Prime Minister if we are to fully protect the lives of our fellow citizens. But I worry that what has happened this weekend will now make this less likely. I worry that those that can and want to have now being given an official license to interpret the rules to their own best advantage.

Fully exercising this moral responsibility should not be a matter for personal instinct or family convenience. Even if some people in positions of power choose to flexibly interpret the rules they themselves instructed the rest of us to follow, we must all still stand together during the ongoing crisis for the sake of our fellow citizens. 

P.S. as a quick follow up to a couple of comments I received on on the 'Intensive Interaction Users' Facebook page (and all serious comments are always absolutely welcome!), I would just like to add to this Blog that I wasn't trying to be overtly political in what I was saying (and apologies to those if it came across like that; which it probably does now that I have re-read it). No, my worries were, and still are, based on my understanding of Albert Bandura's 'Social Learning Theory', which focuses on how human behaviour is related to situated learning, and how that learning is developed and expressed within a broader social context. 

Our behaviours are learned from, and their expression influenced by, the behaviours of others - especially from the behaviours of those we see as having high social capital i.e. those in positions of influence (hence the term). This is how societal or social norms are generated, defined and propagated across a society. 

That was, and (unless some corrective or compensatory action is quickly taken) still is my concern i.e that social distancing (and 'isolation' when contagious) rules will now generally become more permissively interpreted and applied by more and more people - putting still more vulnerable people's lives at risk if the virus continues to spread more than it would if the rules were still being applied equally amongst us all. 

As  Albert Schweitzer (Nobel Peace Prize winner) said; 

"Example is not the most important thing in influencing people: it is the only thing".

2 photos in full PPE - but in which am I smiling?

For my quick 'Intensive Interaction during a pandemic' blog this week, I am just showing two photos of me taken at work today. 

But I have one question: 

On which photo am I using dramatised facial expressions to communicate a clear smile?

The answer is both! But I just hope the second one shows it more clearly. 

As an Intensive Interaction adaptation, it isn't perfect by any means; it certainly isn't 'classic' Intensive Interaction, but in the current circumstances it is perhaps the best we can do - its at least an attempt to mitigate the communication constrains that full PPE brings with it. 

It certainly made me laugh!

For my short Blog this week, I am sharing a link to a 'LD Coronavirus Resources' page made available by trainees at Lewisham MHLD Services. I haven't looked through it all yet myself, but just thought that some of it might be useful across our community of parents, carers, teachers, etc.

You can access it at: https://sites.google.com/view/learningdisabilitycoronavirus/home?authuser=0

More details on current UK government guidance on Covid-19.

For my nice and short Blog this week I am just going to point out the links I have been given for the most current UK government guidance on Covid-19 (as of 29.04.20).

1. Government guidance for Home/Domiciliary Care (24 April 2020)

The new home care guidance can be found at COVID-19: how to work safely in domiciliary care which includes the latest PPE guidance.

2. Government  guidance for care staff supporting adults with learning disabilities and autistic adults (updated as of 24 April 2020)

Apparently an updated version  of this guidance (it is now all in one place) came out on Friday, and can be accessed at: Coronavirus (COVID-19): guidance for care staff supporting adults with learning disabilities and autistic adults. 

3. Testing (updated as of 29 April 2020)

Social Care staff can now be tested either by self-referral, or employer referrals – you can check the guidance at: https://www.gov.uk/guidance/coronavirus-covid-19-getting-tested

Please keep well, please keep going, but please keep safe.

p.s. My 'weekly' blogs are now likely to become a bit less frequent (i.e. less than weekly) as I have been redeployed, and am now going back to work as a Healthcare Support Worker in one of our NHS Specialised Supported Living Service homes (after a career break of more than 30 years) - Fingers crossed that I can be more of a help than a burden!

This week's Blog is a sad one.

Unfortunately, my blog this week is a sad one, but it was one that I have been expecting to write for some time now (although that doesn't make it any easier).

Last week one of my long term, Intensive Interaction partners died from Covid-19. Anthony was a man I have known for well over 20 years. He was a man that helped me learn so much about how to positively and genuinely connect with someone who has profound levels of intellectual and physical disability. He was someone who, at the very start of my professional Intensive Interaction journey, helped me develop my deeper understanding of the rationale and practices of the approach – he made it all so easy for me! I owe him a lot; I hope I have repaid that in some way by helping many other people like Anthony experience the positive social inclusion afforded by our approach.

But Anthony wasn't someone whose character was limited by his profound levels of impairment, quite the opposite; his sense of open and inviting sociability filled a room. He was always a genuine pleasure to be with; his enticing smile and raucous laughter both highly infectious (perhaps that's not the most PC of terms to use at the moment, but it’s no less true now than it was before). He will be greatly missed by all those that knew him and cared for him.

I was so very sad to hear of his passing. I was equally sad for all the members of his care team – some of whom I have also known for many years, and for whom I have the greatest respect and affection.

It is hard for us on the outside to truly imagine what it is like to work under such physically and emotionally draining conditions. When I left some flowers at the house I could only wave at them through the window (they were fully gloved, gowned and masked up as they continued to care for the other residents in the bungalow); it seemed like an impenetrable barrier to our sharing our collective anguish. My heart goes out to them, and to their own families who will be currently struggling through the effects of pandemic.  

When we are clapping on a Thursday night, let’s make sure you give an extra round for all our residential carers – I know I will.