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

Introduction:
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)

*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

Endings…………and new beginnings by Ken Donaldson & Julie White

By Ken Donaldson

For anyone working for NHS D&G it is unlikely that you have failed to recognise that at the end of the year some of us will be moving in to a new hospital. I am aware this will not directly effect those of you who work in the community or services that are not moving across to the new site but it is likely to have some impact. This is an exciting time; the building itself will be quite spectacular and it offers lots of opportunities for change.

That change is coming is apparent. In December we will move to the new site and whilst I am quietly terrified at the prospect of this move it is not what this blog is about. Nor do I want to talk about change but its accompanying partner, transition. So what is the difference? Well change is situational, the physical move, how we will get all the equipment, beds and kit across to the shiny new building. Its how we move the patients and ourselves and, then, start to work in the new environment. This may sound like a transition but its not the same thing. Transition is psychological, how we actually deal with this momentous move.

Transition

We have all been through transition before; starting a new job, moving house, taking a newborn baby home for the first time. And although you may not realise it you have gone through a process during that transition. There are three broad stages to transition. First we ‘let go’ of the old ways then we enter a ‘neutral zone’, where we are neither doing the old or the new, and finally we have a ‘new beginning’. If we take the newborn baby example then we can see that whilst there are so many wonderful aspects of bringing your first baby home there are also many things that we have to let go; a good nights sleep, a significant amount of money and the freedom to just go away for the weekend to name a few. Most people just get on with it and accept the losses but others can struggle. The neutral zone may be brief but still exists, often at 2am! As the dust settles and visitors stop coming so often and reality sinks in. This is it now, no going back. After that the new beginning as we settle in and accept the new way of life. The transition process is different for all of us and for some may happen very quickly, over days. However for others it may take a lot longer. Sometimes just knowing that this is a process can help.

Letting go

This stage can feel akin to bereavement. The emotions we go through are similar and the ‘Transition curve’ is to all intents and purposes identical to the ‘Grieving curve’ or stages of bereavement. When we know change is coming (as we do right now) then we can enter a state of denial which is entirely normal and hopefully doesn’t last too long. This is followed by anger, bargaining, anxiety, depression before being followed by understanding, acceptance and moving on. Not everyone experiences these emotions and some are fleeting but the reality is that they will all be manifest in our teams to varying degrees as the move to the new hospital approaches and ultimately happens. There is not a vast amount that can be done to deal with this process other than recognise it and support each other through it but small gestures can help; we want to remember the ‘old’ hospital so what can we take other than memories? Perhaps you can make up a photograph album for your area or ensure that some memorable artefacts (posters, pictures, the Ward Gonk) are not forgotten and adorn the new environment.

The neutral zone

So this unusually named area, like something out of Superman (okay, that was the Phantom Zone and was in Supergirl; the neutral zone was, apparently, in Star Trek, but I’m no Trekkie) is a bit of a psychological no-mans land. It is the time when the old way has gone but the new way does not feel comfortable yet. It is important to recognise this zone and not try to rush through it prematurely. Its also important not to be frightened of it and try to escape i.e. get a new job. People do this frequently and it is rarely the right thing for them or the organisation. Finally, recognising this area and staying with it is important because it is often the time of real innovation and a chance to revitalise our services. The neutral zone is an area of opportunity, a chance to replace old habits with new ones more suited to the new environment.

A new beginning

New beginnings are much more than starts. We will ‘start’ in the new hospital the Monday after the migration when the majority of staff and all patients have moved. And we will get on with it, of that I have no doubt. It is going to be a real challenge coping with the move then a few weeks later the Christmas/New Year double whammy and THEN January! But I suspect the majority of us will still be in a neutral zone just coming to terms with the new environment and will not yet have made the new beginning. Starts involve new situations, beginnings involve new understandings, new values, new attitudes and new identities. This can take time and may take longer as we will be extremely busy just keeping the new hospital functioning but, again, its important we recognise that it has to happen. If we don’t move to the new beginning then we can hold our team back, sound like a stuck record “It wouldn’t have happened like this in the old hospital” etc.

There is no doubt the next 6 months will be hard. There will be increasing visits to the new DGRI and next month the structure will be complete and we will have ‘the keys’. I suspect December will loom ever larger on the horizon as the migration and all that entails becomes a reality. As I said above I am positive that we will just get on with it and things will work out fine, albeit there are bound to be some bumps along the way. But I think it is important that we recognise the psychological impact on all of us involved in the move. It will have a massive impact on our lives and if we understand just a little of why we are feeling the way we most certainly will feel then that may help us all get through it. That and looking out for each other, remembering to be kind and a smidgen of gin.

 

By Julie White

We are now only weeks away from our staff and patients being able to experience the benefits of a modern, state of the art hospital which will enable us to continue to provide the highest possible standards of care to our patients in the 21st Century. However this change means a significant transition for many of us. Transition has been defined as any event, or non-event, that results in changed relationships, routines or roles. (Schlossberg, N 1995) The move to the new hospital will mean changes to routines, working relationships and roles for a large group of our staff. However, we all go through transitions, big and small, as part of our everyday lives. How we deal with these transitions is important……
Right now, for me and my family, we are going through a transition which will be familiar to many. My 11 year old son, Adam, is just about to undergo the transition from primary to secondary school. Whilst the school have worked hard to prepare him for this move, Adam is having to ‘let go’ of the comfort blanket of primary school, being one of the ‘big boys’ and having the security of a well-known routine and the familiar faces of teachers and pupils. I am also having to ‘let go’ and accept that Adam is becoming more independent (even allowing him to walk to the end of the road to catch the bus to Lockerbie!). This transition is huge for both of us, for different reasons.
I recognise, however, that we are entering a new phase and there is no going back now. I have to admit, however, I am far more nervous about the future than Adam is – he has the fantastic ability to see this as an adventure, an opportunity to learn new things and make new friends. He also particularly liked the lunches at the Academy when he visited which is always good news for an 11 year old boy!!!. I am anxious about the move to a much larger school, worried that he will need to make new friends (whom I won’t initially know) and that our very close relationship may change as he nears the teenage years!!. I know, however, that I will do everything I can to make this transition a success as I will do with another major transition in my life – the move to the new hospital.
It is less than 4 weeks until we ‘get the keys’ to the new hospital and we can begin our commissioning and migration process. Feedback from staff who have had the opportunity to visit has been overwhelmingly positive. All staff will have the opportunity to visit for orientation sessions between September and the end of November (if you haven’t booked a slot yet please do so!).
Whilst the move to a brand new state of the art hospital will be an exciting prospect for many, it is important to recognise that for some staff, the move will evoke emotions such as fear, loss, anxiety and sadness. We have lots of staff who have spent most of their working lives in DGRI (some of whom have worked in the same ward or clinical area for 20 years or more) and we cannot underestimate the scale of the transition for lots of us. Some staff will also have memories of being a patient (or having friends and family members cared for in the existing hospital) and we have a general attachment to the past, to our history here and to our memories of the good times. I would encourage staff to think of ways of ensuring that you and your teams don’t forget the good times and take photos and memorable artefacts with you. The new build team will also be ensuring that some of the treasured artwork from our existing hospital is incorporated in the new DGRI eg the tree of life. I am sure we will all create new memories and have good times in the new hospital but it’s important not to forget the past.
In order to help with the transition process, we are planning a couple of events to celebrate our new beginning and to recognise the varied emotions that people will experience.. We will hold our annual Winter Service at Crichton Church with a theme of “ new beginnings”. I also hope to hold an event in the Atrium of the new hospital soon after the move to acknowledge the huge amount of work undertaken by staff, celebrate the fact that we have had a safe, successful and smooth move (which I am confident we will achieve by pulling together) and to focus on our future in our new surroundings. If anyone has any ideas about how else we could mark our transition, please get in touch.
I would also like to acknowledge that not everyone in the current hospital will move to the new facility. Some staff will choose to retire or leave but other teams will be moving to Mountainhall Treatment Centre (Cresswell to us all just now!) and I fully appreciate that these teams will experience different emotions when the move to the new DGRI takes place. We will work hard to ensure that we support all staff during this transition and it would be great to hear people’s thoughts about how they can best be supported during this time.

 

Julie White is Chief Operating Officer and Ken Donaldson is Deputy Medical Director Acute Services at NHS Dumfries and Galloway.

References

Bridges, William. Managing Transitions. 3rd ed. Nicholas Brealey Publishing, 2009.

Kubler-Ross, Elizabeth. On Death & Dying. Scribner, 2014.

“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?”

When  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!

Since 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.

 
So 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.