#TwitterDisco: Caring For Those That Care

If you haven’t joined us for a #TwitterDisco yet then why not?

You don’t even need to leave the house.

Our next event is scheduled for Friday the 20th January at 9pm with JennyTheM as our host DJ.

All you need to do is…

  1. Find leg warmers & disco shoes
  2. [Bloomin’] smile
  3. Imbibe*
  4. Follow @JennyTheM or #TwitterDisco
  5. Play links
  6. Dance & sing

*optional [mine’s a Babycham #justtheonemind]

As with most things, there’s a back story and so, I’ve been asked to tell you a little of what this #TwitterDisco malarkey is all about…

Last year, as I grappled with the guilt of leaving my GP partnership…a decision which resulted from intolerable pressures and too many days where I didn’t see my children awake…I made a vow to find a way to help my colleagues, many of whom remain struggling at the coal face. In recent years, and in the aftermath of Mid-Staffs, my academic work has increasingly focused on delivering the message that we have to ‘care for those that care‘. My move into strategic leadership was, in large part, motivated by a need to find ‘another way’ for both my patients, living with the devastation of Austerity, and for my colleagues, working with an expanding, often unsafe, workload and increasingly limited resources .

Now, I am not going to tell you that #TwitterDisco is that ‘other way’. And I have been extremely careful not to trivialise the serious impact that the current status quo is having upon many of my colleagues’ mental and physical wellbeing. But there is something about giving oneself permission to have fun that provides an important release from the solemnity of our working lives. And, whilst we negotiate for long-term, sustainable, systemic changes that incorporate an agenda for the well-being of all our NHS staff, it feels okay to to share joy with my colleagues and to promote our humanness and our right to participate in activities that restore us in our time away from work.

For me, that restoration increasingly comes from playing my music, and singing loudly and, of course, the most fun of all is to be found in having a bloomin’ good dance.

Rumour has it that there’s an evidence-base to using singing and dance as therapy, as a way to meditate and to heal. And that’s great. But I’m not very good at being told what to do and so, very much like gardening, I prefer to love it just because I do.

And even though I forgot for a while…I really do love to dance. Always have, always will. A parent, who shall remain nameless, removed me from ballet classes when I was three because I was so clumsy (and chubby) that I was an embarrassment so I don’t mean that kind of dance, I mean DANCE. Disco dancing, club dancing, party dancing, all-night dancing. The dancing you do with the lights low and the music [almost too] loud. The dancing that happens when you give your body over to the music and just let it happen.

Disco dancing and I have history. Without realising it if I’m being honest, I ‘did’ the Manchester Music Scene. Of course, I went to The Hac darling but in reality it was all about Monday & Wednesday nights at The Ritz…if you were there then you know…hot pants, tights, DM’s (first time round), the bouncy dance floor, cider £1 (or even perhaps 50p) a pint. It was an amazing fusion of Grunge (the state of the carpets, not the music) meets Goth and the Manchester tunes got better as every week passed.

As a medical student, I did the Liverpool Cream all-nighter thing. That was particularly fab. When home from uni, we regularly disco danced on Canal Street, usually dressed in fairy wings. Once upon a time, whilst I danced on a table, a perfect Italian described me as an angel. “I’m not an angel, I’m a f*cking fairy” was my reply, and, in non-medical circles at least, that catchphrase has stuck. I am a fairy, but that’s another story.

Looking back, it felt as if those disco days would last forever. But life has a funny way of throwing obstacles in my way and before I had time to bid my youth farewell, dark days arrived. There followed a period of time when joy was lost to me, when I became a doctor and my Dad died. Life was very serious and somehow the fun dropped out of my world. Other things took fun’s place. In the middle of all this chaos and loss, we had the kids and we all know that ‘Rhythm & Rhyme’ on a Friday morning in the church hall does not a disco make.

As our kids got a bit bigger, and we eventually started to sleep again, we realised that we’d somehow made it to 40 and, with renewed effort, we remembered to dance. And when it was my turn to be 40, my h’Uncle Roger brought me a new guitar, all the way from Canada, and I started to play my guitar again. Music became an increasingly important part of our family’s social life. Now, instead of our children keeping us awake, we lost sleep playing guitar and YouTube karoake. And when death suddenly came to our door again, I was reminded, albeit in the saddest possible way, that music  binds us, lifts us, moves us and, in time, has the ability to heal us.

Last year, because of my sabbatical, for the first time in a long time I frequently found myself blissfully alone. Without really thinking about what I was listening to or why, I was taken back to the music of my youth, music from the last time that I remembered feeling truly good.  This process made me indescribably happy and, for the first time in a long time, I felt free. I had serendipitously rediscovered [the old] me. And as I explored & gained confidence with Twitter, I began to tweet about my music. Mostly cheesy, usually from the 80’s, the soundtrack to my day found its way onto my timeline.

Somewhere along the way, other folk started joining in the fun and sharing their music too. Cue stage left…with a mutual love of Fame & leg warmers…Louise Brady entered my world. And she thought that #TwitterDisco could be a ‘thing’. It is her enthusiasm and encouragement, as well as her unshakeable belief in the value of human relationships and mutual support that has brought us to where we are. I have been extremely grateful to experience her warm support and to be welcomed into a new group of healthcare professionals, patients and carers, all working towards the same goal…caring for those that care. A good proportion of the rest of this story belongs to Louise.

In a very short space of time, this novel way of sharing our delight in music has gained momentum. And one of the big attractions is that it can be enjoyed by those, who by virtue of ill-health or caring responsibilities, cannot easily leave their home.

Our last #TwitterDisco had a reach of 142,000. I don’t really know what that means but it doubled from the time before, sounds impressive and we all had a fantastic night in.

We have plans…we’ve a live #TwitterDisco in place for February…that’s one where you can still play along at home or, if able, you can actually leave your house and join us on a bouncy dancefloor…and we’ll be closing a national conference in July.

So here it is…#TwitterDisco is now a thing. A fun, liven up your day, raise some money, do some exercise, sing at the top of your voice kinda thing….a thing all of its own accord, taken to a different level by Louise Brady, John Walsh  and their many colleagues. Warm hearted enthusiasts with confident souls who embrace the world and see the best in everything and everyone.

And the energy and evolution  of #TwitterDisco now rests with them and, we sincerely hope, with you. We’d love you to join us, to sing along and share some of your favourite tracks. And, apart from having tremendous fun, we hope you leave the #TwitterDisco experience a teensy bit restored.

As for me, when not agonising over which leg warmers to wear, I will be watching with interest to see what happens to #TwitterDisco next.

 

a sad goodbye

This coming Monday, sometime around midday, I will leave my practice for the very last time. And whilst the last few months, back at my desk after sabbatical, seeing ‘my’ patients, has tested my resolve, I remain convinced that, for my family at least, taking a break from GP partnership is still the right thing to do. My children know what I look like again, and frequently tell me to go away and to stop bothering them. A once very anxious son is now coping well with life. An often very grumpy husband still has his moments but does not carry the strain of family life on his own and sometimes (almost miraculously) smiles a little.

I have taken time for a few, mostly introspective and teary, reflections as I have silently said goodbye to patients, many of whom I have cared for, often very deeply, and some of whom I genuinely love. And  it is with this sadness in my heart that I share these thoughts about the privilege that being a GP is, and still remains, despite everything that can overwhelm us and make our job near impossible at times.

I have been a partner in a deprived, urban area for 12 years (7/10th of my working life). And whilst I cannot now ever say that I have devoted my whole working life to one practice, and we doctors are competitive souls, I have given the best that I could to my patients throughout this time. And, in a way, part of my reason for leaving at this time in my life, when my family need me too, is because I have sometimes given too much, leaving nothing left for anyone else, especially me.

I found my niche as a GP and have not wanted to be anything else since I realised the power of listening, truly hearing and talking as theraputic tools. Many of my patients have been able to find what they needed in my consulting room and have been able to move on in their lives because of time we have spent together. I have so much knowledge stored in my head about so many of my patients, vital miscillanea that have no place in medical records. I am a respectful custodian  of deep and traumatic secrets that I have been asked to take to my grave, but I have also shared in many tales of life’s joys, successes and triumphs too. And, as I step out of the front door for the last time on Monday, these secrets and tales will leave alongside me.

I haven’t been able to say ‘goodbye’ in any formal sense to either my colleagues or my patients. This change of career path has left me without words for, as I once said, “I cannot tell you how sad it makes me feel to tell you of a decision that has made me so happy”. Today, however, I suddenly felt that some expression of what I have been experiencing, as I’ve treasured my last days and weeks with my patients, was necessary, for me at least.

I went on a home visit this lunchtime to see a dearly loved, long know patient of mine. We hugged, we chatted, we caught up on each others’ family news and then, almost as an after thought, we sorted out ‘the medicine’. And I wanted to distil this feeling, of sitting with a terminally ill patient, who remains generous in spirit despite their pain, whose face lit up when they saw me and whose journey I have been able to share. It is this welcoming that we receive into people’s lives that I will miss, this welcoming that is the privilege of General Practice. It is this that I will miss the most. Being in the same moment with a patient who might just be helped by something that I know or say or hear from what they want to tell me. It is this privilege that, in time, I will seek to find and establish somewhere else.

And so this is my thank-you to my patients. My thank-you that I cannot say out loud because the emotion is too overwhelming to share in any other place than here. It will only ever be these particular patients who formed me as a GP and whose stories have fuelled my passion for my career so far. I may never be able to tell them individually how much they have meant to me, how they have empowered me, how they have enriched my life and made me determined to fight against inequality and deprivation as my career takes a new turn. Perhaps they will never know how much their wanting to see me, instead of another GP, has strengthened my identity and self-worth and how proud I have been to serve them for a dozen years.

As I step out of the practice door for the last time on Monday, I will carry my patients in my heart and I will endeavour to remember the lessons that they have taught me as I continue on my slightly uncertain way.

Forgotten to remember

A somewhat political plea wot I made to some important folk earlier this week…

I was worried about speaking today. I was worried that I would cry, or be too political, and so I thank those of you who have paved the way for me already today. I wasn’t going to say anything, but then I thought “sod it, it isn’t often that a doctor like me gets to address a room full of people who are able to change the system within which we work” and so I wrote these words in Trafalgar Square. (As a complete aside, and as a proud Mancunian, I am always genuinely disappointed in myself when I come to London. It is just so exciting!)

Imagine a deep intake of breath and the need to hold back tears…

 My story is about what has gone wrong in General Practice.

For a long time, I thought that it was just me, that I was weak, that I am not resilient enough BUT that is simply not true. It is the system that is broken and I defy anyone to ‘stay resilient’ indefinitely under the workplace pressures we are currently facing in Primary Care.

Two years ago, in order to focus on my academic work, I began my preparations for a sabbatical. I am the Lead for Ethics & Law at Manchester Medical School and that is a full-time job in itself.

A very difficult 12 months, in both my professional and my personal life, ensued.

A year ago, I left my practice (at the end of a 13 hour day) for a ‘year off’. My family think that description is the world’s biggest joke; I worked harder last year than ever before! On that same day, a year ago, my burnout score was 68/75. This equates to ‘you are at severe risk of burnout-do something about this urgently’. I knew that I was burned out. I did not need numerical confirmation. I did my score on purpose. I did my score to make sure that I did not rely on easy choices and easy solutions as I moved into my sabbatical year.

I was really pleased when, five months later, my score had dropped to 40/75. But this still meant ‘be careful’. Looking back now, it surprises me how long my recovery took.

This morning, on the train at 6am, my score was 24/75 (‘little sign’) and I think this simply means that I am awake, not fast asleep. This score is despite a pretty challenging and important situation that was still being resolved late into the evening the previous night.

Over that last five years, I have vicariously watched my patients’ lives devastated by Austerity. Carrying their pain became too much for me to bear. As you watch this film, please don’t pity me. I have a rich and varied life, meddling in DevoManc, having Twitter discos, inciting medical students and seeing a small number of patients once again. What I want, is for you to watch, and to remember, that my patients, devastated by Austerity, have one less GP who cares for them. And, whilst some of my colleagues are just about hanging on in there, many too are dropping like flies.

http://www.patientvoices.org.uk/flv/1005pv384.htm

 

Half a life…


Some days, when I wake, I am paralysed by the pain of my loss. Today is one of those days. I experience a deep seated, aching pain, absolutely in the middle of my chest, and I wonder if I will be able to face the day ahead. I am, and will always be, a bereaved child.

Today would have been my Dad’s 72nd birthday and I am still so, so angry for all the birthdays, high days and holidays that we haven’t had.

My Dad died in October 1999 after two years of life-prolonging but devastating medical treatments for his leukaemia. They were the most brutal of years and yet the most heightened and precious too. Most of that time, especially in the aftermath of his death, is a haze for me. I was finshing my medical degree. I was getting married. I was renovating my first home. I had no idea what to do in this situation that was beyond human steer or emotional control.

And in many ways, I still have no idea what to do. What to do with this part of me that never wanes. But, most of the time at least, I have learned to live with my life as it is. Acceptance is all that I have to ease my way. And a knowledge that this happens, in one way or another, to us all.

I have ‘outed’ my grief this year. Taken to the brink by the emotional pain and agony of my patients. Becoming unable to sit firmly any longer on the lid of the box that I had closed tight shut nearly seventeen years ago. Needing to find some spiritual peace. Enabled by sabbatical and time for me, by a maturing in my own sense of self, empowered by Twitter as a forum where my colleagues are brave enough to be ‘human’, I have trusted myself to speak out and my world has not, as I once feared, disintegrated.

I was ashamed of my grief. I felt that I had to bury it deep inside. That I had no right to feel the depth of pain that I did when the world is such a treacherous place for so many. I am extremely privileged in so many ways. But now I see that I am my grief and my grief is me. That I am dishonest if I do not confess my ‘conflict of interest’ in matters pertaining to life and death. Because my most formative experiences of dying and death were lived alongside my Dad’s leukaemia. They have informed my professional aptitude and empathy. They have made me the doctor that I am.

My dad was angry when he was ill. He felt that he had only had the opportunity to live ‘half a life’. He still had so much to give and to gain from the world. There was no peaceful resolution, and, in the end, no hope.

This is not the place to expand upon the experiences of my other family members, suffice to say that, because of her loss, my Mum has only lived ‘half a life’ too.

When my Dad died, I did not foresee that the path of my life would be changed forever, but now I live with the understanding that to have loved and lost my best man ever, means that this is the only way that it could possibly be.

So, what do I do?

I live on in my Dad’s shadow, chanelling my time and energies and beliefs into work that I know he would value. Facing the world through his legacy. Trying to live a life that is full and vibrant. Giving daily respect to my own mortality. Prioritising only the things that are important and the people that matter.

And, on days like today, by taking one day at a time…and sitting quietly…and remembering…and being at one with my grief…

Conscience

For more than one reason, my conscience has been on my mind this week.

As Canada prepares itself for Physician Assisted Suicide (PAS), a philiosphical debate has been resurrected about the obligation of doctors to the healthcare system within which they work. And there seems to be strong encouragement for the view that we are agents of the legal system within which we work and, therefore, have no legitimate right to conscientiously object to performing healthcare that is endorsed by the state.

Many of the arguments are cohesive and water-tight in a philosophical sense but it raises a question that I often ask myself as I make personal sacrifice for my profession…’What about me?‘. In the current literature, there is a distinct lack of empathy for the practitioner who is being asked to take on a life-altering activity on a potentially regular basis.

I’m pro-choice when it comes to death. It’s my death and I don’t know why the state needs to take such a vested interest in it. Foul play apart, lack of capacity apart, the decisions to be made are mine and mine alone. I may choose to involve my family should I be lucky enough to still have one at that juncture in my life. But in order to die how and where I desire, I may, ultimately, need to take some matters into my own hands. It would be preferable were our law to endorse this right, but, when facing death, remaining within the law will no longer be my main concern. I won’t need my GMC registration once I’m dead.

In my doctoring life, I am excruciatingly aware of my beliefs and the legal system within which I presently work. Let me be clear, for the record, I do not advocate or explore issues around Euthanasia or Physician Assisted Suicide with patients. This is currently illegal. The fact that I disagree with our present law does not alter my professional practice.

However, in my teaching role, and for over a decade, I have explored in great detail the permutations and contradictions of our present approach to end of life care and choices. From dialogue with hundreds of students, we have come to, on a philosophical basis at least, an equilibrium of belief where respect for autonomy trumps the state’s right to control choice. Students’ level of caution and personal morality varies greatly but most agree that the ‘death’ itself belongs with the patient and their loved ones.

Most of our students advocate a change in UK legalisation in favour of Active Euthanasia, knowing that for some patients this will need Physician Assisted Suicide, and I don’t think they’re saying that just to keep me happy!

Where our discussions seem to lose consensus is once we start to approach PAS on a pragmatic level.

Who is going to actually perform the Physician Assisted Suicide?

Will my 10.30am appointment be a pill check, my 11.15am the ‘PAS slot’?

And, this is definitely where I start to struggle. I can’t marry up in my mind the commitment to my living patients over those who wish to die.

How will my patients feel about me if I help people to die and they disagree with this action?

How would performing such an act affect me as a person and as a doctor?

Could sufficient reassurance be provided to stop me from lying awake at night wondering if it was the right decision?

What if I had never met the patient before I was asked to euthanase them?

What if the panel who had overseen the decision turned out to be incompetent…or flawed…or corrupt?

What if, ultimately, despite strong protest in favour of choice, and heartfelt beliefs that patients know themselves best,  I don’t want to be the one to do the killing?

With, or without, robust and unrefutable arguments to support my instincts and strong sense of self, isn’t that still my right? Or can a society, not necessarily secular in its legal derivation, genuinely compel me to act in its best interests?

Does it add to my defence that I am consistently contrary? I feel similarly about abortion. Again, pro-choice, and disgusted to think of the denigration of woman internationally from lack of this choice, I am admiring of my colleagues who perform abortion but have guided my own career choices away from regular contact with the procedures involved. Although happy to counsel and facilitate women at very difficult and challenging times in their reproductive lives, I believe that I would be altered as a person if I performed abortion on a regular basis. I fully accept that this may be described as cowardly, or seen as ducking my responsibility within the profession, but is it not okay to have that level of self-knowledge and reflection? The reasoning may be less moral and more visceral but I have also chosen against sawing bones or dealing with men’s bits on a regular basis too. It is perfectly possible to guide one’s choices to have a fulfulling career, avoiding paths where one’s conscience might hinder a patient’s right to choose certain procedures and care. And, I do believe that this is genuinely okay whilst we have colleagues who can countenance their roles and, I hope I’m not being naïve in saying, bear the consequences of their working days. So long as patients can have their choices met by some doctors, why do we ever need to suggest that all doctors have to provide all services?

And so, on the matter of Physician Assisted Suicide, I think that it is okay to say “listen to your conscience” and live within your own moral compass, so long as you endeavour to facilitate your patient’s preferences, as guided by the law where you practice your profession. Don’t be bullied to do something that will fundamentally alter you as a human being. Just don’t obstruct the autonomous choices of your patient and their right to die.

If you are not the doctor who will, find a doctor who is. And, if there is no doctor who will, then we really do have to go back to the drawing board, because a patient always has the right to ask, but a doctor with, or even without, professional autonomy, on matters so large, should also have the right to decline.

 

John’s Tale

Here, this tale, of a marvellous man…

a  man who died far too young.

A teacher who campaigned.  An activist who acted.

A husband who wooed with poetry, passionate & true.

A father who nurtured & adored.

An untimely patient who succumbed, to leukaemia, whilst still in his prime.

An Oxfam volunteer. A meditating, real ale drinking hiker.

A man of Manchester. A kind & gentle man.

A man of his time, of Orwell (George) and Laurie Lee,

of the 60’s, of the political revolution, of intellectual nobility.

From humble origins, to a humble end, with so much to show for the years in between.

This man could have been your patient. But he wasn’t.

He wasn’t ever just a patient. He was, and always will be, my Dad.

The School Run

Perhaps the most amazing consequence of my sabbatical year (that’s the one in which I still work full-time but am on a career break!) has been regularly walking my boys to school.

Mostly, our mornings have been high-pitched and frenetic, each of us stressing in different ways about where we have to be and what we have to do when we get there. For me, full of maternal angst at leaving my boys, by car, early at breakfast club, and never quite the right number of books, gloves or PE kit. Any harsh words, long forgotten by them, but carried close to my heart through the rest of the working day. A challenging separation, that carried with it all the woes of modern motherhood.

But, now, not so. Put simply, the school run is the best part of my day.

Don’t misunderstand me, I am no paragon. I often advise my boys that they should ‘send me back to the shop’ and request a newer, more fit-for-purpose model. The screaming and shouting before leaving the house has only marginally dissipated, and, in actual fact, at times, rages bigger and better than ever before. But somehow this feels like a luxury now. Ample time in my children’s company, allowing irritation & frustration to rise before willingly letting it out… because I can know that there are plenty of examples of ‘funny mum’ to offset ‘shouty mum’.

That 3/4 of a mile, walk (for me), scoot (for them) from home to school, is a meditation on being a mum. A segment of time that belongs only to the three of us. Coats on, bags on, gloves on, alarm on. Door locking as the boys scoot on away. The gravel path that sticks in the scooter wheels. A glance to the river then onto damp pavement. Turning the corner onto the busy road (“mind out for the cars!”) and ‘wham’, rush hour is upon us. There’s the mahoosive puddle and a tricky road crossing, where we take first our feet (often soggy) and then our  lives (so far, so good) into our hands.

The next bit is the very best. The straight drag past the police station where we race (‘on the way’), or play hide & seek (‘on the way back’). Into the hospital car park and there’s space to freewheel (“mind out for the cars!”). As we turn onto Burton Road, we join the throngs of other parents, the ones I envied before, who also walk their kids to school everyday. And there it is,  that sense of community, distilling the pleasure that primary school brings to our family life.

Funnily enough, my ‘we hate walking’ boys never once complain. Our walk to school is the first adventure of their day. A treasure chest, full of memories of fun, and symbols of my love, that I hope they will recall far beyond the here & now.

Being honest, I like the walk home, on my own, a scooter in each hand, almost as much as I like our frenetic walk ‘there’. I clear my head and start my brain on its thinking for the day. I can buy ‘just one thing’ from the shop! As a ‘working’ mum (I refer you to my first sentence) I never shopped for ‘just one thing’ at a time. So this is yet another revelation. I arrive home, ready for myself and for coffee and for my day.

I nearly didn’t have this a year ago, but then I remembered to remember that I’m going to be dead a long time. And I know not everyone can make the choices that I have been able to, and I am full of gratitude that I have been able to take one small side step in a very hectic life to take pleasure in small & simple but life-affirming things.

It is the most precious time and I almost never knew.