Promoting Psychological Wellbeing in SCI Dr Suzanne Clarke, Clinical Psychologist a.k.a. Suzanne March 2017 suzanne.clarke8@nhs.net
Tell me what you want, what you really really want. How would you know that this session has been helpful? How do we make this meaningful to you?
Hopes for the presentation Instil hope you are already doing wonderful things, so do more of what is good. You go away feeling positive and energised about working with people with SCI Your colleagues will notice your buzz and say hey what training have you been on?
A little feedback psychological wellbeing? What do you mean? it wasn t my priority, my priority was getting better physically. it was the little things!! the jokes the atmosphere of the ward They did what they could when they could despite overworked and understaffed. I was surprised they carried on doing their work with everything they had to deal with, I couldn t have put up with it.
Phew! That s ok then Patient Experience consultation for DoH (2003). The quality of a patient s emotional experience was a major factor in their satisfaction with the service received: Feeling: reassured, respected, cared for, listened to, in control, safe. Consequent feedback: satisfied, relieved, cared for, confident in treatment, confident in NHS, pride.
People with SCI Just the same as you and me.it could be you and me Human beings! Unique! Thinking, Feeling, Doing machines Experienced an unexpected, extraordinary event that has changed their life.
How do we know how people are coping? What do we see? What do we hear? What do they do? What do people do around them? Is there a right way of coping? Do you ask them? How have you been surviving? how have you managed problems in the past? What is helpful to you? Coping and Control
Life Plan
Potential view post SCI
and really?
So how do I support people post SCI? Ok so a long long time ago in a land far far away (America).. there was a psychiatrist (Milton Erikson) with a story to tell. Each person is a unique individual. Hence, support should be formulated to meet the uniqueness of the individual s needs, rather than tailoring the person to fit the Procrustean bed of a hypothetical theory of human behaviour... Milton H. Erickson
So what am I saying?
So take a moment What about you? What makes you you? If you were to end up in hospital what do you think it would be important for people to know about you? How would you like people to be towards you?
Do you like being told what to do?
LISTEN When I ask you to listen to me and you start to give me advice, you have not done what I asked. When I ask you to listen to me and you begin to tell me why I shouldn t feel that way, you are trampling on my feelings. When I ask you to listen to me and you feel you have to do something to solve my problems, you have failed me, strange as that may seem. When you do something for me that I can and need to do for myself, you contribute to my fear and weakness. So, please listen and just hear me, and if you want to talk, wait a minute, for your turn; and I will listen to you.
Compassion not doing to Let us not underestimate how hard it is to listen and be compassionate. Compassion is hard because it requires the inner disposition to go with others where they are weak, vulnerable, lonely and broken. This is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or finding a quick cure for it. As busy, active, relevant people, we want to earn our bread by making a real contribution. This means first and foremost doing something to show that our presence makes a difference. And so we ignore our greatest gift, which is our ability to be there, to listen and to enter into solidarity with those who suffer. Henry Nouwen (1981) The Way of the Heart. Harper and Row, London
The starfish story Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after abig storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions. Off in the distance, the old man noticed a small boy approaching. As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea. The boy came closer still and the man called out, Good morning! May I ask what it is that you are doing? The young boy paused, looked up, and replied Throwing starfish into the ocean. The tide has washed them up onto the beach and they can t return to the sea by themselves, the youth replied. When the sun gets high, they will die, unless I throw them back into the water. The old man replied, But there must be tens of thousands of starfish on this beach. I m afraid you won t really be able to make much of a difference. The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, It made a difference to that one!
Once upon a time This is a little story about four people named Everybody, Somebody, Anybody, and Nobody. There was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it. Somebody got angry about that because it was Everybody's job. Everybody thought that Anybody could do it, but Nobody realized that Everybody wouldn't do it. It ended up that Everybody blamed Somebody when Nobody did what Anybody could have done
What makes a doughnut a doughnut?
Like playing golf
What s the most important thing? Where s the hole? What is the person s ideal is then it makes the rehab (or playing the hole) so much more easier! Ah didn t we say people have already overcome adversities? Well how did they do that? What tools (golf clubs) do they already have? What do they know about them selves that would be helpful? (course knowledge, hook/slice/good at bunker shots/need coffee after nine holes, look forward to 19 th hole)
This is not new You are already doing this This is not new Important to reflect on what you are already doing well. Ask people how best to support them. Problem free talk is GOOD!!! People are more than what they are not, and what they may have lost, complex and will amaze you!
So what are you saying Supporting people is unique to each individual. Best way is to ask Get to know the person hobbies interests, who is in their family, what are they usually like asking for help? How have they overcome adversity before What is their best hopes for their future? What are they already doing that is consistent with that?
If I ask that then surely they will say they want to w..w..alk?!? Then what? Of course they will! And if it was you would you continue to hope? Or would you like to be told that that was an impossibility there is after all ground breaking research happening everyday. What would they be doing if they were walking sports/hobbies, roles of parent, grandparent etc ok so cycling may not be possible, hiking not possible, but who says they can not get back to feeling the wind in their hair, observe the wonder of nature? And what people in wheelchairs can t be parents? Can t go on holiday? Don t have fun?
If you want to build a ship, don t drum up the men and women to gather wood, divide the work, and give orders. Instead, teach them to yearn for the vast and endless sea.
Asking people what they want is a hard question
Tell me what you want, what you really really want. What are your hopes for rehab? What are your hopes for life after rehab? What are your hopes for this week? Today? How would you notice if it had gone well?
Ask and then wait Plant the seed It may not be a conversation they can have right then Challenge them to think about it Values the edge pieces of the jigsaw
Hobbies/ Fun/ Leisure activities Family Partner/ loved one/ intimacy Education Being a parent Me Spirituality /Religion Environment and Community Career/ Work Health Friendships /social life
Strive strive strive How content are you? Are we allowed to be content? Society built for content ness? Isn t content ness strange? Tend to focus on what we are not, easier to say what we don t want The old don t know what we ve got till its gone Scale it on a scale 0 10, 10 being the most content with how life is, 0 being not content at all in any way shape or form. Where are you?
And then? Well where are you on that scale? What makes it that number AND not lower than that?!? Mmm so there is some good stuff going on in your life then. Good! Keep doing it! Are you happy with your number? What number would you like it to be? What would you notice is different in life then? What else? What else? What else? What else? Can even go as far as, what wouldn t you change?
Noticing change Finding out what is important identifying peoples values, allows goals to relate to people living to those. e.g: values better to measure than goal of walking easier to notice change, and people can engage with it despite walking or not.
Human Need
Rehab and The Jar of Life? Golf Balls what is important to us our values Stones other things that matter work, house, car, i pad, etc material things Sand the even smaller things all critical to our happiness playing with kids, shopping, cleaning Liquid the basics sleep, food, love,
Documentation supporting this There is a wealth of literature out there re. person centred care. Here are a few NHS documents including: Simon Stevens Five year forward View October 2014 When doctors and patients talk: making sense of the consultation. Health Foundation 2012 Personalised Care and support Planning CCC NHS England, Jan 2015 Navigating Health and Care: living independently with long term conditions. NHS IQ and Ipsos MORI Stepping Forward, NHS England, 2014 Patients preferences matter, Kings Fund, 2012 to name a few
Long term health conditions 99.999% of patients time is spent out of presence of a doctor. How do they manage? NHS facing change not just acute, fix it, but helping people manage a life despite health. It s difficult for us to do. Duty of care, new things coming from research. Philosophy is different. Rehab is not fixing. Rehab is learning to live life as wanted whilst managing difference.
We want people to be in charge of their care. Independence is a well established value in many. Hospital does not usually promote this. Red tape, health and safety, medication management, lights out, no alcohol, food will be this, wear a red arm band for this, a yellow one for falls, and of course so we know who you are, a name band too please.
We are training patients to be a MDT. For them to be able to have the confidence in what to do should something happen, and how to manage proactively to prevent something happening. It is a shock. People do not like it.
The impact of a long term condition a form of grief quest for cure/redemption being misunderstood and alienated...would be easier to have a broken leg in plaster, life's a party not invited to...and consequent withdrawal retrospective rose tinted view of an idealised past things people tell you: well meaning (usually) advice and its pitfalls... effect on nearest and dearest... 'you don't know what it's like' effect on helping relationships in hospitals...set up to be a hero leads to reduction to zero and then, like Pandora's box, came hope: post traumatic growth... learning to live in this 'new country'
Recovery and rehabilitation is different for everybody. Spontaneous natural physical recovery can happen over years. Important to consider what people want
And what if? Ask what would be helpful do they want/ would they be open to formal support? Refer to psychology team health psychology/ neuro psychology Psychiatry liaison HALT, community Drug teams Samaritans Existing support tools
Think about patient experience and handover. If it was you or loved one. What I have spoken about today is not rocket science Your mission if you wish to accept it consider how do we handover the unwritten information we learn about the patient when they transition to the unit?
Strengths Safety and Wellbeing
Other support Happy to have conversations re people coming to the unit. Support from Spinal Injuries Association website, information, regional support officer, Gary Dawson SUAG www.suag.co.uk ASPIRE www.aspire.org.uk SIA www.spinal.co.uk Back up www.backuptrust.org.uk Wheel Power www.wheelpower.org.uk
https://www.aci.health.nsw.gov.au/resources/spinal cord injury
Life is not about waiting for the storms to pass... It's about learning how to dance in the rain. Freedom comes not from being in control of life but a willingness to flow with the events of life.
In summary Keep doing what you are doing. If you are unsure ask the expert aka the patient Keep throwing the starfish back into the sea. You may not save them all but those you do will be ever so thankful.
And finally Golf is easier when you know where the hole is A doughnut is a doughnut because of the dough, not the hole.