Absent Friends and Full Beam Living by Gill Stanyard

Just like the crimson poppy helps us to remember the fallen ones through War on Armistice Day, a couple of weeks ago,  it was the  Absent Friends Festival (1-7th November). It was created as an opportunity for people across Scotland to remember and share stories of ‘absent friends.’  A wall of remembrance was launched, as part of the festival, where you can post online tributes -here are just  a few that I read this morning:

 

To three dear colleagues who worked tirelessly to improve the end of life   experience of others, all to die of cancer too soon

 

    To Gordon, the garden volunteer .Just to say your recycled strawberry planters are working really well and we still miss you – a lot

 

   You told me you were dying but I didn’t want to believe it. I’m sorry I didn’t talk to you about it when I had the chance. I miss you so

 

 

I wrote the following for Robert Allan,a  fellow Board Member and my colleague who died suddenly in September:

 

 Robert, sorry I did not see you again after you went away on holiday. I will miss sharing your blueberries and all the banter and laughs we had. XX

 

He died whilst abroad with his partner and friends.  I cried when the news was delivered, on an early sun-filled Monday afternoon, in the Boardroom.  It was more out of shock initially and then I felt my sadness rising. I had sent Robert a text  just that morning, as I had not heard from him for a little while.  It was not like him, he was usually quick at getting back in contact.  We had been joking together just before he left  to go on annual leave about his new ‘regime’ of 45 minutes on the exercise bike whilst watching  old episodes of M.A.S.H. I had messaged him to ask if he had got back ‘in the saddle’ after holiday time.  I loved watching M.A.S.H too, it felt good having something in common. We were both very different, yet we shared good banter, laughter and stories. I  particularly used to like hearing of his time served as a Policeman in the Met, down in London, in the late 70’s and 80’s. He said it was like being in ‘The Sweeny ‘at times.

Gill S 1

Robert was a Board member for seven years and in that time he brought much  to improve the service and to increase patient safety through scrutiny, constructive criticism, and ensuring that the Board’s strategy met the needs of the people of Dumfries and Galloway.  Robert really embodied the  role of the ‘critical friend.’  He was a Champion of Health Inequalities and a great advocate of patient empowerment and self-management, particularly for people with disabilites. He was Secretary of D & G Voice – a vibrant and expanding disability movement, with influence in Dumfries and Galloway and also on a national and UK stage.

In a blog Robert wrote  back in April, he wrote of the many highly skilled and dedicated people of the NHS who’ .. do their best everyday.’  This can certainly be said of Robert,  who despite having multiple long term health conditions and mobility issues, he always did his best

He leaves a wife and two daughters behind. If you like, you can read his blog here: https://dghealth.wordpress.com/2017/04/26/life-in-the-nhs-a-personal-view-by-robert-allan/

 

Robert was not afraid to speak up and speak out -he never held back.  In one of the last emails he sent me, he wrote about the importance of speaking up without ‘fear or favour,’  he included a quote :  ‘All that is necessary for evil to flourish is for good men to do nothing.’ (For men include women nowadays.) (Sic)

 

That quote really got me thinking. And I am still thinking about it. To me, it is about  self-leadership and feeling safe.  Why would good people do nothing? What gets in the way of action? These days, there is no one leader. The cape of the heroic stand- alone leader, who would lead everyone out from the shadows and into the light, has been shredded. We are all leaders. The word leader comes from the Germanic word ‘leiten’ meaning to ‘light the way.’ This always gives me an image in my head of a lighthouse, with the bright beacon at the top.  I wonder how many of us feel like we are operating on full beam with our leadership?

Gill S 2

 

I have crashed many times on my own rocks of faulty thinking,  believing that I had to wait until it felt ‘safe’ to speak out.  Experience as a whistleblower in a former job and being a Non-Executive has shown me that the opposite can be true. Speaking up makes the environment safe. I am sure that there are many of us sitting on the sidelines with valuable information, insights and experience, that only we know and can share. We are waiting for the invitation from perhaps our managers or colleagues, that is not going to come, as they don’t know we have this important information. When others speak up in meetings, disagree with a decision, point out errors or provide clarity, it is inspiring. When we do it, it  can be scary and  we can feel vulnerable. ‘Pssst -it feels the same for those inspirational ‘others.’  You are an asset. You are enough. What you know matters, it may not necessarily be about a specific job or issue, it might be about you being a carer or the time when you solved a problem that others were struggling with.When you authentically act in the service of others, the environment supports you.

 

Self-leadership is a ‘rendezvous with reality’ according to International Coach Lars Sudman …he urges us all to go looking for ‘feedback’ to enable ourselves to grow deeper in our self-awareness and  to reflect on our decisions and how we are framing issues. Asking for feedback can often result in tumbleweed city being unleashed.  Try it for yourself and see what response you get. Do you hear a faint whooshing noise?! People don’t always think the ‘truth’ is a good idea. However, we can give ourselves feedback, based on our own reading of a situation and how we felt we did. If you ask yourself now about the worst leader you have experienced, what did they do? Did they shout? Did they use shame as a way to gain compliance and control? Did they with-hold information? Now score yourself out of ten, for the same things. How good are you at sharing information with others, for example? Based on your scores, what is your plan to execute your leadership and make improvements?

 

Research at the University of California has shown just 2 -5  minutes a day of this can increase compassion for yourself and others, thus leading to better decisions and less stress.  Harry Kraemer, Professor of Strategy at the Kellogg school suggests this mini-reflective exercise could be the key. Ask yourself:  ‘What are my values, and what am I going to do about it?’ He writes “ This is not some intellectual exercise. It’s all about self-improvement, being self-aware, knowing myself, and getting better.”

Gill S 3

 

This is nothing new, Marcus Aurelius, was a philosopher and Emperor of Rome from 161 -180 AD.  He was one of the most powerful men in the world and was described as a ’beacon of ‘leadership’. Every night he would  sit down and reflect on his day, and prepare for his tomorrow by asking  the question “I will encounter difficult people tomorrow, how will I react?” If you ask yourself now about the best leader you have experienced, what did they do? How did you feel in their presence? Now score yourself out of ten, for the same things. Based on your scores, what is your plan to execute your leadership and make improvements for your tomorrow?

 

Several years ago,  Bronnie Ware, a Palliative-care nurse from New South Wales in Australia captured the regrets of people who were dying, when she was with them in their final weeks of life. Ware wrote of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. “When questioned about any regrets they had or anything they would do differently,” she says, “common themes surfaced again and again.

 

Here are the top 5:

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I hadn’t worked so hard.
  3. I wish I’d had the courage to express my feelings.
  4. I wish I had stayed in touch with my friends.
  5. I wish that I had let myself be happier.

If you reflect on these, what’s your greatest regret so far, and what will you set out to achieve or change before you die?

When others from the Board and I attended Robert’s memorial service,  I learnt lots of things I didn’t know, such as he loved the music of Leonard Cohen.

Here are the lyrics to ‘Dance me to the End of Love’ by the man himself. It is my wish that you enjoy your dance -and my wish for Robert that he is now safely inside his ‘tent of shelter.’

Dance me to your beauty with a burning violin

Dance me through the panic till I’m gathered safely in

Lift me like an olive branch and be my homeward dove

Dance me to the end of love

Dance me to the end of love

 

Oh, let me see your beauty when the witnesses are gone

Let me feel you moving like they do in Babylon

Show me slowly what I only know the limits of

Dance me to the end of love

Dance me to the end of love

 

Dance me to the wedding now, dance me on and on

Dance me very tenderly and dance me very long

We’re both of us beneath our love, we’re both of us above

Dance me to the end of love

Dance me to the end of love

 

Dance me to the children who are asking to be born

Dance me through the curtains that our kisses have outworn

Raise a tent of shelter now, though every thread is torn

Dance me to the end of love

 

Dance me to your beauty with a burning violin

Dance me through the panic till I’m gathered safely in

Touch me with your naked hand or touch me with your glove

Dance me to the end of love

Dance me to the end of love

Dance me to the end of love

L.Cohen     

Gill S 4                                   

If you would like to add your own tribute, to absent colleagues, or relatives you have lost, follow the link.  Sometimes we don’t get the chance to say the things we really wanted to.

https://www.toabsentfriends.org.uk/content/remembrance/

 Gill Stanyard is a Non Executive member of NHS Dumfires and Galloway Health Board

 

 

 

 

Patient Centred Care – Your Actions Today by John McGoldrick

A wee story.

George ‘Geordie’ ‘Specs’ Hastings was 72 when he died on 29 January 2017 after a short illness.

StepsGeorge was one of the town’s characters, seen and greeted by many as he sat on the doorstep of his flat in Assembly Street, Dumfries. George had a very full and active life, working in many of the key establishments in and around Dumfries. He was a family man, a much loved Dad, Granpa, Great Granpa, a big football fan and just a popular guy who always had a smile, ‘hello’, quick quip and happy chat. He amused many with his stories and his legendary sun tan was achieved he claimed in (on) ‘Door Steppie’, many puzzling where that exotic place was. The volume of family and friends attendance at his funeral service reflected the status he had in our community.

George ‘took ill’ and was in painful, deteriorating health for a number of weeks in late 2016, culminating in his attendance at the Emergency Department, DGRI on 15 December 2016.  George had been under the care of his GP(s) and District/Practice Nurses, with little apparent improvement in his ‘sciatica’ as George intimated to folks.

His attendance at ED saw him immediately admitted to hospital, the duty ED Doctor recognising a significant deterioration in George having seen him some 3 weeks earlier and the review of George’s ‘on line’ recent blood test results indicating a significant health problem –news to his family. From then George was submitted to a range of checks, tests and treatments for what was quickly identified as tumours on his spine, bladder and lung. The immediate response and care provided by the ED medical and nursing staff was exceptional.

He was admitted to ward 7 and the medical team contacted the Oncology team in Edinburgh. This resulted in George being transferred to the Western General Hospital for a spell of treatment before returning to DGRI ward 12. It was here that he and his family experienced ‘Open Visiting’ which made life easier for all of them. Unfortunately though, due to bed pressures, George was transferred to a Cottage Hospital that did not have the same visiting freedoms. This led to extreme frustration for Georges family and friends as they had to travel some considerable distance to visit him only to find they had to wait for some time in an area they didn’t know to get ‘access’.

Why was George moved to a Cottage Hospital some distance from friends and family? Well this is sometimes necessary when beds are tight but is not seen as good practice however we must remember the need of the patients at the ‘Front door’ who need admission and maybe extremely ill. However in this case something was missed….George was dying, this was beyond doubt. There were no beds in the Alex unit but was he the best person to move to a CH? This is answered when it became apparent that George ‘needed’ a blood transfusion and required transferred back to DGRI to receive this.

Following this George was moved to a Nursing home where he died one week later on 29th January 2017, 45 days after initially presenting to ED. This last week was not the best for him as caring staff did their best with a dying man who was in pain and discomfort. This raises some questions; did George require a trip to Edinburgh in what was to be the last month of his life? Was it fair to move him so many times, 6 overall, when he was dying and needed a little comfort, love and continuity? Did he require the final move in his last days? DGRI was busy, it was the Christmas and New Year spell that often leads to real pressures but what happened to George? He just disappeared in the busyness and ended up being passed from pillar to post, not the best way for such a kind, respected man to end his life.

There may be no easy answers but there are some things we can do – our New Hospital will have open visiting on all wards and we can replicate this in all our hospitals. We can have more realistic discussions with patients and their families to prevent unnecessary trips either to Edinburgh or other major centres and for other treatments that may only prolong death rather than life. But the main thing we can do is remember George, and all the other patients like him. They are not simply ‘bed blockers’ or ‘the stroke in bed 3’, they are people, with lives, families, friends and stories. They matter and as such should be treated with kindness and respect.

Specs

Thought for today

George was a ‘Ten out of Ten’ chap.  His end of life care and treatment did not reach that standard.

We often hear that lessons learned and procedures put in place will make sure no repeat of the identified problem events.  As you go about your professional business today – will you really make sure that you listen to patients views and wishes, that you ask Whose Needs are Being met? and What Matters to Them? to do our best to ensure that there will be no other terminally ill patients who have to suffer a similar journey to that of George Hastings?

John McGoldrick was a friend of George Hastings

The Buzzzzing Fridge was Back! by Elaine Ferguson

Elaine 1Elaine 2

 

 

 

Elaine 1

 

 

Bzzzzzzzzzzzzzzzzz

 

How does being asked to do a blog remind me of a buzzing fridge? Well simply, a buzzing fridge was the image, along with the above facial expression, that came to my mind when Dr Ross Warwick, Lead for the Clinical Health Psychology Service, asked me to write a blog as part of our service promotion. His request provoked feelings of anxiety accompanied by forgotten memories of a much wanted, all singing, all dancing fridge purchased years earlier to make my life complete. Instead, it had left me feeling bewildered and anxious with all my attention and behaviours being taken up trying to fix the BUZZ that emanated from inside the fridge. Automatic thoughts predicting my imminent failure resurfaced: the BUZZ was back!

My initial catastrophic thoughts, images, feelings and behaviours reminded me of how uncomfortable it is when we are asked to do something that feels overwhelming or out of our comfort zone. Avoidance is often how I try to resolve these feelings of distress and discomfort but I can’t think of a time when that solution has actually helped! So with Ross’s words of encouragement ringing in my ears (“It’s good for your development”) and a reminder to myself that “avoidance doesn’t help” I decided to feel the fear and do it anyway. (Practise what you preach Elaine!).

For the past three years I have worked as a Psychological Therapist in the Clinical Health Psychology Team. Prior to this I worked as a Mental Health Nurse in busy wards and community settings. During my career I have not always been given the opportunity or support to look after my own psychological and emotional needs in the workplace. On reflection this impacted on the enjoyment and satisfaction I gained from my job. This affected my ability to live true to the values that had brought me into the field of mental health, i.e. helping and supporting the psychological wellbeing of my patients. From this experience grew a passion to look after not just my patients but also the emotional wellbeing of my fellow workers.

Part of the Clinical Health Psychology Team’s values and philosophy is the inclusion of colleagues in the work we do to develop and facilitate lasting psychological change in patients with long term health conditions. Crucially this includes helping staff think about their own emotional wellbeing and how we can do this in busy, chaotic and at times distressing working environments. In a nutshell if we look after ourselves, our patients get a better service.

This takes me back to my buzzing fridge. It too was meant to add something to my life but like some of my earlier working experience it became a source of annoyance, frustration and sadness with all my attention focused on the aspects I disliked about it. My attention drifted to the high pitch buzz and it started to taint my entire view of it. The pleasure and excitement began to be replaced by frustration that no matter what I did, I couldn’t stop the buzzing. Shaking it, turning it on and off, opening and closing the door, and finally shouting at it made no difference. Thoughts rushed in “I can’t even pick the right fridge!”, “The shop has sold me a broken fridge, I’ve been conned!”

 

Elaine 1    Elaine 3Elaine 1

It was at this point my friend popped in for a cuppa (too early for a cocktail). She admired the new fridge. How dare she!  I pointed out the buzzing and she said “Sounds fine to me; how are you?”  We got talking about family, friends, work, hobbies, and nights out and generally putting the world to rights. When she left I suddenly remembered the buzz from the fridge. I tuned in and yes it was still there. Curiously it didn’t seem so loud and it didn’t seem to annoy me as much as it had done earlier. What had changed? I realised that I had stopped focusing in on the buzzing because talking and sharing with my friend was of much more value and importance than listening to my new fridge. I had put my energy into doing what mattered. The more I had talked about what was important to me and my friend, the less I had noticed the buzzing.  I had enjoyed sitting in my kitchen with the fridge that buzzed. The buzz eventually became a low level necessity which assured me all was in working order with my new, shiny fridge.

Elaine 1My buzzing fridge has once again melted into the background. Why? Well simply because I have chosen to get on and write this blog and whilst doing so I have remembered why I enjoy coming to work every day. I get the opportunity to work with people like you who are passionate about their jobs but like me have buzzing fridges of their own which can leave them feeling distressed, disillusioned and unable to do more of what matters to them in their working days and home life. My job allows me to remind you that you are important.

If you and your team would like to know more about the training and consultation we offer, that may improve your own personal psychological wellbeing which in turn assists us to care for our patients and each other, please get in touch.

To quote my boss “you don’t need to be a psychologist to provide psychological care”. My friend wasn’t. So maybe I would add another question to Robert Barton’s list from his blog, the one that my friend asked me … How are you?

Elaine 1

Elaine Ferguson is a Psychological therapist for the Clinical health Psychology Service at NHS Dumfries and Galloway

 

 

 

 

 

Questions Are the Answer by Robert Barton

Rob 1Patients often feel overwhelmed and intimidated when they attend hospitals and clinics. These are busy places, time can be tight and, as professionals, we can unwittingly send out signals that might prevent patients from engaging. Unsurprising then that on many occasions patients say little and ask few questions. An unpublished American study showed that from the time they arrive until they leave, men ask an average 1.4 questions, including asking about parking!

Rob 2

 

This post is about questions, using them to encourage patient’s to actively engage in their healthcare and things we could ask to help shine a light on the complex mix of physical and psychological issues accompany illness.

 

This topic is particularly close to home for me.  My elderly mother has recently attended outpatient clinics in Edinburgh where she felt unable to ask questions during her appointments and was left no clearer about her condition. What’s more, because some questions were overlooked the professionals involved had a very sketchy picture of what was happening to her and this affected the success of treatment.

 

In Clinical Psychology we tend to start asking questions at the beginning of a consultation so the patient can understand why they are there and what to expect from the appointment.  This includes setting the agenda, a practice that could have value in other clinical settings as it ensures we have common goals for the available time and promotes collaboration (and involved patients tend to have better outcomes, Redding, 2017)

 

To set the set the agenda and make constructive use of time we might ask questions such as:

  • What would you like to get from this appointment?
  • Why have you come along today?
  • What would be helpful to you today?
  • This is why I think you are here and this is what we need to do, are there any questions before we begin?

I couldn’t attend appointments with my mother so we set her agenda by writing an outline statement of her problem giving clear information about her condition. This approach proved to be a great help to the outpatient clinic, helping them to understand her problem more clearly and how it manifested day to day, helping her achieve better outcomes.

 

Patients in clinics may have many questions about their treatment that are primarily used to gather information: what is this test for? When will I get the results? How do you spell the name of that drug? Can I park in the ambulance bays?  We may ask similar closed questions in the course of a consultation like “is this the worst it’s been in the past month?”  Using closed questions are useful when we want factual information and can create opportunities to ask open questions or invite a broader reply like “can you tell me a bit more about that?”

 

My mother was attending outpatient appointments to address poor mobility caused by an arthritic condition. During the appointments she was examined, her medication checked and the appointment would end with something they hoped was helpful. Questions about how she was feeling, what she thought and how her behaviour had changed were overlooked. If they had been asked they would have realised she felt a bit low and useless, had thoughts like “nothing is working so what’s the point” and her behaviour had changed; she went out less and stopped enjoying life. This all affected her condition which continued to deteriorate.

 

When patients are suffering from a health problem they can experience a whole range of unhelpful emotions that could affect their treatment. These emotions can be grouped under three headings.

  • Loss: sadness, down, and depressed.Rob 3
  • Fear: anxiety, panic and terror.
  • Anger: rage, frustration or irritation.

Emotions can lead to unhelpful thoughts about health that can often be untrue. Feelings and thoughts can lead to behaviour changes the patient makes often with the intent of helping matters but in reality can have the opposite effect.  So making small changes in our routine practice can help us become more familiar with our patient’s condition by understanding how it makes them think, feel, and act.

 

Involved patients have better outcomes. But if they are less likely to ask questions because of the environment, what open and psychologically-aware questions might we ask to help us have a better understanding of their problems?

Thoughts:
What does that make you think?
What runs through your mind when that happens?
When you feel like that what does it make you think?
What images come to mind when that happens?

Feelings:
How does that make you feel?
How do you feel when that happens?
When you think that how do you feel?

Behaviour:
What did you do when you thought that?
What did you do when that happened?
Is there anything you do that you find helpful / unhelpful?

Physical sensations:
When you feel that way do you notice any physical sensations?
Do you notice any physical changes when that happens?
Have you noticed any physical changes when you get those thoughts?

In psychological therapy it is important to invite people to make changes to their usual practice. So, with that in mind, which of the above questions will you commit to try at your next clinic?

References
Don Redding (2017) Patient engagement: A ‘win-win’ for people and services NHS England Publication.

Robert Barton is a Psychological Therapist with the Clinical Health Psychology service

Big brother is monitoring you by the Respiratory Team

Big brother is monitoring you – real time telemonitoring in CPAP and NIV therapy users
      with sleep disordered breathing

d6e7bc44feb1613d05b10_XLIntroduction:
Obstructive Sleep Apnoea Hypopnoea syndrome (OSAHS) –It is more than just extreme snoring! It is a relatively common condition where there is repeated collapse /narrowing during sleep which interrupts normal breathing and can cause low oxygen levels as a consequence. Click here to see what happens during sleep in an individual with this condition.

The consequences of untreated OSAHS can have a significant impact on an individual’s quality of life, causing problems such as poor performance at work or at school and may also place a strain on relationship with others.

  • The reported incidence of OSAHS is 3–7% of middle-aged men and 2–5% of women (ERS White book 2017)
  • There is an estimated 25% prevalence in people who are overweight
  • Other contributory factors are enlarged tonsils and tongue base and upper airway anatomical abnormalities such as a very narrow airway, short jaw or deviated nasal septum.
  • There is increased risk of road traffic accidents from untreated Sleep breathing disorders. Current DVLA guidelines regarding sleep apnoea can be accessed here.

Poorly controlled OSAHS may also increase the risk of:

  • developing high blood pressure
  • having a stroke or a heart attack
  • developing an irregular heartbeat such as atria fibrillation
  • developing type II diabetes although it’s unclear if this is the direct result of an underlying cause such as being overweight

Our Sleep medicine service has in excess of 1000 clients living across 2,500 square miles of rural Southern Scotland. Considerable commuting distance and time are involved for service users to attend centralised clinics in Dumfries and also for clinicians attending peripheral clinics in the west of the region.
We have introduced real time telemonitoring over the last 24 months in some people who are using CPAP/NIV machines. These devices have an inbuilt sim card that have the capability to transmit treatment efficacy and adherence data to a secure web based platform combined with our usual clinical care. (See figure 1)

image2

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*not real patient names

Telemonitoring of CPAP and NIV potentially offers a convenient option for reviewing people at distance with OSAHS on treatment with Continuous Positive Airway Pressure (CPAP). It may have significant potential to deliver person centred, safe, and effective care that is closer to home (1). There may also be additional benefits for patients and clinicians in terms of reduced travel, fuel consumption and environmental impact in terms of reduced carbon emissions (2).

We have now evaluated this new technology and any future potential benefits it may have for service users and our clinical service delivery.

To date we have experience of introducing CPAP/NIV with telemonitoring in 116 patients.  There are currently 64 on active telemonitoring with 18 using CPAP, 14 APAP and 27 on NIV using the Resmed S10 Airview platform. No safety concerns or data transmission issues have been encountered.
The evidence for teleconsultation/telemonitoring in CPAP users is limited; however no safety concerns have been raised.  Adequately powered, well-designed trials are needed to establish whether real time telemonitoring and remote teleconsultation is a clinically and cost effective option for people using CPAP therapy. Further work will be conducted in our sleep medicine service over the course of 2018 in a Randomised controlled trial.

1.Isetta V et al, 2014. Telemedicine-Based Approach for Obstructive Sleep Apnoea Management: Building Evidence Interact J Med Res 2014; 3(1):e6) doi:10.2196/ijmr.3060
2. Murphie P, Clark L. Telemedicine – the Good, the Bad & the Future? by @murphieRNC & @Louisefclark. 2014.  Available from https://dghealth.wordpress.com/2014/…/telemedicine-the-good-the-bad-the-future-by-…
      (Accessed August 2017)

Phyllis Murphie, Robin Paton, Ross Paton, Musa Ali, Jane Gysin, Stuart Little

Respiratory Medicine Department,
 NHS Dumfries and Galloway
, Scotland

“Hello it’s me…why aren’t you there?” by Bob Heath

I am watching you from this field of grass

You can see me but you don’t hear me

I can see you talking but only hear myself

If you noticed me you’d run away

Theresa, Sobell House, 2012

When I received an invitation to speak at the last Medicine Unboxed event in Cheltenham, UK, I was immediately struck by the title for the weekend: voice. It’s a word that permeates throughout my work perhaps more than any other, and it’s a word that carries deep significance for many of the people I work with as a music therapist. Here’s an interesting exercise; try thinking of some of the words you might use to describe voice. How soon do you move on from descriptors such as “singing” and “speaking” and “quiet” or “loud” into “powerful” or “silent”, “lost” or “rediscovered”, “unheard”, “unwelcome”, “abandoned”? And, of course, this is just the tip of the iceberg. This word is impossible to disentangle from pretty much every human emotion and experience. Even in complete and perfect silence there is still a voice; and we’re listening to it.

At Medicine Unboxed I played the recording of a woman I had worked with, whom I’d called Eileen. I’d met her in a care home a few years ago and she’d been referred to me because, in the words of her referrer, “she’s driving us all mad”. Eileen was 90 years old and was, I was told, suffering from late stage dementia.  I  found  her  in one of the day rooms, rocking slowly back and forth in a wheelchair, eyes closed, mouth wide open saying “La, la, la” constantly in a voice that ached with loneliness and despair. They’d asked me to see her in the hope that a music therapist might help her find a way to be quiet. Her voice was too much for them to bear.

I took her to her room and for a while we sat opposite each other as I joined in the dialogue with Eileen, repeating her “La, la, la” at her pitch and at her pace. Eileen’s eyes were still tightly shut and I had no idea how she was responding to me; or, indeed, whether she could hear my voice at all. After a short time I moved a little closer to Eileen, played a simple open chord on my guitar and began to sing her words, “La, la, la” using a single note. The quality of my own engagement changed within seconds; I felt more open, a little revealed and as a result, perhaps, my willingness to be present and alongside Eileen became more apparent. Eileen responded almost immediately, her eyelids flickered. She cleared her throat and began to sing her own song with me, “La, la, la”. We met on five further occasions and we always sang together. Her repertoire expanded with each session as she explored her own vocal range and from time to time sang new words, almost always the names of other people. In our last session together, shortly before she died, Eileen sang uninterrupted for 40 minutes.

When I have shared the recording of this session with colleagues and health professionals, it has  provoked long debates about music and the brain, fuelled by evidence emerging from neuroscience about experiments with people engaged in active music making. It’s all fascinating stuff, of course, and helpful in many ways. But I have a much simpler way of explaining my experience with Eileen. By answering Eileen I could let her know that I could hear her and that I was listening; her voice moved from unwelcome and dismissed to heard and acknowledged. By singing her words I was able to communicate something more: the importance of her words, exactly as she was saying them. Eileen’s voice moved from heard and acknowledged on to welcomed and respected.

Today, perhaps more than ever before, there are loud voices all around us, angry voices demanding that we show our ability to care for vulnerable people with respect, integrity, and compassion. It’s our primary duty; nothing else works for the patient or the carer if we don’t practise in this way. And isn’t this exactly what Eileen was trying to tell everyone working at the care home where she spent the last 2 years of her life? “La, la, la…this is the voice I’m left with, why won’t you listen to me?”

Bob 1When  working  in  palliative  care  environments with people who are dying, I have encountered an extraordinarily wide range of voices. I have become familiar with voices that are frightened, shocked, or angry, as well as those that are reconciled, peaceful, and hopeful; and my work involves listening to and hearing them all. It became apparent to me very early on in my work at the hospice that music therapy sessions would be an opportunity for people to talk as much as a chance to play music. I knew that creating music would provide a powerful channel for emotional expression and I sought to encourage my clients to stay in what we would frequently refer to as “The Musical Space”, where the rhythms, melodies, and harmonies we created could become a representation of the words themselves. Here, I would often meet the silenced voice, the frightened voice, and perhaps most frequently the lost voice.

The words that began this essay come from a song written by a client, Theresa, a woman in her late 50s who was finding the last few months of her life unbearable. In our first session she had said almost nothing at all, preferring instead to sit at the piano playing single, repeated notes with one finger as I supported her by providing a simple harmony. When I asked her how she was feeling she thought for a long time before replying, “invisible”. In our second session she had told me how much she wanted to die. I’d probed a little and she replied: “They think I’ve disappeared, I must be dead already.” By our third session a more creative dialogue had opened up between us and by placing some of her words into a musical framework Theresa was able to not only express but also to explore some of her more difficult feelings in a helpful way. “But I love you all”, she wrote in her second verse, “And I watch you all, I am always here, guarding you. You can call on me, you can call on me.” By reading the words back to Theresa I was able to help reinforce her sense of being acknowledged and listened to. But I believe the transformative moment in our brief time together came when we recorded the song with Theresa singing. This had taken a considerable amount of negotiation in supporting her to overcome some of the judgments she had been making about what she was saying and how she was going to say it. When Theresa finally listened to the recording of her song she cried, something she hadn’t been able to do for many months. Then she said: ”There, it’s done, it feels good to tell the truth”. For Theresa, finding her voice again had also revealed some of the reasons why she had come to believe that it had disappeared in the first place.

Helping patients to find their voice is not the exclusive preserve of those of us who work in palliative care environments. But perhaps the very nature of these environments does invite us to seek opportunities to model and develop approaches that are both creative and compassionate. Perhaps too it’s easier for us to place “the patient’s voice” a little closer to the top of the complete care package simply because we’re asking such big questions of patients, as they are of themselves. But even then it can still be one of the most difficult things to do. The Liverpool Care Pathway was, I believe, a well intentioned system designed to help give patients and their families their voices at a time when they most needed to be heard. Could the failure in the successful, long-term implementation of such a system have something to do with the way that we are listening? This may seem to be a simplistic view of a very complex system but the Liverpool Care Pathway, like all systems, can only provide the framework. The rest is down to us.

Looking through the list of the many hundreds of songs that have been created by my clients over the past 10 years or so, I begin to notice a striking feature. Almost all of these songs were created at a time when the writers were at some level experiencing discomfort and pain. And yet very few of the songs address these issues at all. Instead, the titles—often the first line of the songs—reveal patients reaching out to us, singing out in fact, and asking us to really listen to their voices. “Are you listening?”,

“Can you hear me when I call?”, “Is there anybody there?”, “Make a space for me”, “Stop, and hear me”, and the list goes on. Many of these songs are addressed to these patients’ own families and loved ones, but I do recall that during the writing process it felt as if these patients were talking to me too. A music therapy colleague recently shared a song that had been created by one of her clients whilst on the inpatient unit. The patient’s words are an invitation to us all:

It’s simple, so simple

Don’t tell me how I feel, ask me,

Don’t run off half way through, follow through Don’t think you know how I feel, Just ask, it’s simple

When we are responsible for the care of those who are suffering we have no choice if we want to do it well. We have to help our patients to find their own voices in whatever way we can. How we then listen and respond will have a profound impact; not only upon the important outcomes that we measure and monitor but also upon the very human experience of needing and receiving care. And, importantly too I would argue, upon ourselves and the quality and safety of the care that we all aspire to deliver.

Bob Heath has worked extensively as a music therapist in Palliative Care and Mental Health and is a lecturer and supervisor. He is published and has presented work at a range of events including The Hay Literature Festival and Medicine Unboxed. He works at Maggies Cancer Care Centre in Cheltenham and has a small private practice in Berkshire

Bob.heath.therapy@gmail.com

Patients’ names in this essay have been changed to protect patient confidentiality.

This article was originally published in the Lancet, Vol 384 September 13, 2014. It can be found here

 

 

A spoonful of sugar helps the medicine go down!

ho-dgriSince starting work I have been more aware of the tendency of the media to focus on the negatives. It is almost daily that we hear stories of how the NHS has failed a patient, waiting times are simply unacceptable or that hospitals are not clean enough.

 
I appreciate that it is this negativity that sells newspapers. There is nothing overly dramatic about the tale of a wonderful NHS experience. The patient came in as planned, the procedure was carried out without complication, they felt better and they went home. Not exactly something which can be spun into a gripping yarn.

 
While press sensationalism is not something new, it has surprised me that at times we struggle to focus on the positives at a local level. We are trained to learn from our mistakes. For the sake of patient safety, adverse incident reporting and critical incident analysis are now key parts in quality improvement. This is important. There are always lessons to learn when a mistake is made.

 
However, is it possible that we also learn from the things that we do well?
When teaching children in their early years parents are encouraged to use positive reinforcement. Just because we become older and supposedly wiser does not mean that positive encouragement loses its’ impact. While we strive to improve on the areas where we can make errors, it is important to also remember the things that we get right. We are always asked to reflect on what we could do differently, not to address the things that you would approach in exactly the same manner. Something which in some situations would be an interesting topic to broach.

 
From my own limited experience I know at times you can feel totally out of your depth. However, if someone takes two minutes to reassure you that you are on the right track it can make a world of difference.

 
IMG_2447So here is my positive feedback. I was told prior to starting work that FY1 would be the most horrendous year of my life. However, I enjoyed starting work. I have was well supported and for that I must thank you all. Everyone working within DGRI has made me feel well supported and at the same time given me room to grow and develop. It is as a result of this that I have continued to enjoy my work and develop as my career has progressed. You have created a supported learning environment for trainees which I hope is something that is recognised, as we all strive to achieve more.

 
So in attempt to round off this entry: if you notice a colleague, family member or a friend doing something well let them know. It takes no time at all and you never know what you might inspire someone to do.