Incredible Women

I have had a wonderful summer, grasping the opportunity between jobs to spend time with my boys being a Mum. It has been a time of nurturing, reflection and rejuvenation. 

As a Mum I, like many of my friends and colleagues, struggle with the balance of motherhood, work, study, the eternal washing and occasional play. I find myself too frequently blaming myself when no one thing is done quite well enough.

I had forgotten how to stop, see and celebrate my achievements. It is in reflecting on this that this week I have been overwhelmed by the women in my life, how mind blowingly awesome they are and the incredible difference they make in our community.

There is my friend who breast fed her premature baby while completing her Masters degree.

My BrumYODO friends who have just won an award for Modern Funeral Director of the year. Who offer truly beautiful personal funerals (and are amazing Mums too)

My friend the Nurse Leader whose audacity, values and pride in nursing have changed the face of end of life care (oh and she’s a brilliant Mum too)

My friend who volunteers for a hospice and a spinal injuries charity. Who has the most beautiful soul and who without I would be a gibbering wreck (and has amazing twin boys)

All multi taskers, but it is not as simple as that. At their core is a sense of what is right. A need to nurture and place people at the heart of their action. 

There are many more,  all unique but sharing that same value base of kindness, community, family and what matters.

And so, I would ask you, my friends to   be mindful of your brilliance and radiance, to love yourselves and each other and remember everyday what incredible women you are. I’m going to try too x

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People, people who need people.

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I have a soft spot for Barbara Streisand. It might be the hair and the nose. I have had an ear-worm from one of my favourite films, Funny Girl,  running around my brain this week, “People who need people”. It resonates with me. Not just because it is wondrous to sing in the shower, (try it) but because people who need people ARE the luckiest people in the world.

I always used to see myself as a one man band, I’m not a social butterfly and in work have always been a bit of a maverick, never quite fitting in with the crowd. But I have had quite a revelation recently… I need people.

I’m 8 months into my leadership role and it has been a roller coaster. I have been surprised by the challenges, delighted by the chinks of light and in awe of our amazing team.

But I’m tired.

Almost full time, three boys (and one big one) and an as yet unfinished masters; and I have felt myself drowning and questioning my decision to move from my CNS role. I had lost my mojo, and began to see every challenge as an unscalable mountain, I started to feel like a failure.

I had a fabulous holiday with friends and family and returned to work with a plan to re-look at my options.

But then ‘People’ happened.

People who inspired me, excited me, made me proud to do my job.

The NHS is a funny old place to be, it’s big and scary, it can at times be impersonal and financially focused. It can at times lose sight of the patient in it’s vast systems but… it has amazing people.

People who inspire.

People who care.

People who will fight tooth and nail for the patient, the person.

People who have vision.

People who break the rules that don’t exist…

Those people have helped me remember, that I can’t and don’t have to do this alone, that I shouldn’t do it alone and that with them we can change the world.

Thank you.

The Peace Lily

So this week I said goodbye to St Marys Hospice. I have been part of the team for over 8 years and we have shared good and difficult times.

When I started I was given a peace lily by the sister of a young woman I cared for who died with her family around her at home. It has stayed on my desk since and survived its first three years on benign neglect. I was too busy and consumed by my patients to look after it.images

I had a year of maternity leave in year four and when I returned it had been fed, re-potted and given the right light. It was flowering for the first time.

After a year of time out and reflection,so was I.

For the next four years it has clung on to life. Some weeks dry and neglected, others nourished, watered and flourishing. But it had grown tired. It’s roots growing out of its pot and searching for new life and light.

My whole team cared for it, each giving it a little bit of their care and attention. But finally it gave up. So we chopped it back, just to see what happened, one last chance.

Last week, on Boxing Day, a tiny bud emerged from the dried stub.

This week there were four new leaves.

New life, new year, new hope.

And I left it there, where I know the love and care will help it to flourish.

And I left with this..1420318294347744802092

I hope I can keep it alive.

Can we always tick the box?

I’m back at ‘real’ work now after a year of full time study. Work for me is as a Palliative Care Clinical Nurse Specialist and I do that in people’s own homes. Things have changed a bit in that year, most noticeably for me in the need to ask people I meet about their Preferred Place of Care and Death (PPC) and their DNACPR wishes. I did this before, as a natural part of honest conversation, about life, hopes, goals, wishes…. when it was right.

But there has been a change. It seems now that this has become a must have conversation, a tick in the box. And we’re all at it. District nurses, GPs, secondary care teams, all making sure the box is ticked. It has become a barometer for Palliative Care, part of the package.

There is good reason for it, we don’t want people to have unnecessary and undignified interventions. We want them to die in the place of their choosing with the care they need. The intention is well meant.

But out the reality is not quite so clear cut.

What about the person who doesn’t want to know that they are dying?  Has made that choice? Can’t bear to open the box?

In my naivety over the years I have felt it was always my job to help them see the light, that in accepting their terminal disease and facing their death we could together achieve a peace. And sometimes that’s right and when it is I feel I have done a good days work.

But sometimes it is not. Sometimes we have to accept that people make a choice to not know, to ‘fight’, to deny, to say “of course I want to be resuscitated” because I’m not going to die. And who on earth am I to make them tick my box?

And there lies the danger. If we measure palliative care by boxes ticked whose agenda is it? Whose needs are being met?

Of course have the difficult conversations, but above all listen, hear what they are saying, follow their lead. And next to the tick in the box, how about we tell the story, say what, how and why?

Part Six: Borrowed Time …

Big Girls Do Cry

No material or content from “Big Girls Do Cry” may be used or reproduced elsewhere without the expressed permission of the author.

This story is dedicated to my Dad …

Gosh it was fun to remember that story! The tale of Dad and my Dr Who scarf! What a laugh!

My mind fast forwards …

And whirrs to a stop.

It’s 1995.

My laughter falters and my smile fades …

It’s mid-October.

Dad had been in the hospital for four weeks.

I bounced in to the ward after work, coming to visit Dad now a well established part of my daily routine.

Click, clack, click, clack.

The familiar noise of my high heels heralding my visit to Dad.

All set to launch without thinking into MY news of the day …

I paused …

Dad …

The whites of his eyes, nowadays clearly yellow, he tried to mask them behind…

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Research is exciting… Who’d have thunk it

It’s been almost a year since I wrote my blog on here, expressing my frustrations at the language of research, of not understanding the posh words. And guess what… I still don’t really understand them.

But.

I kinda get it a bit, I know the difference between quantitative and qualitative and why you would chose one or the other (or a bit of both). I know how useful measurement of our practice makes a difference.

And I know how to do it….. a bit.

I think I know and understand enough to get by.

And.

What I have discovered on my journey is…. if your research is your passion it is really exciting.

Making discoveries.

Having the opportunity to engage with, and hear the experiences of, incredibly committed professionals from across all boundaries.

Fabulous.

I did a focus group. Online. My participants were twitter colleagues, how cool is that!?

It was a bit clunky, I wanted to mimic a #tweetchat and it wasn’t quite that, but the content…Wow.

I’ve been analysing this week, (posh word for having a good read and making new sense and meaning) I am jumping up and down at my laptop when I make a connection or have an ahhhh… moment.

Now I can’t wait to develop my survey, I want to know what lots of people think about the connections and meanings I have made. That’s the quantitative bit… I think I’m supposed to do some sort of posh workings out after that but I haven’t quite sorted that bit out…

Did someone say PhD?

A Dignified Death

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Former Archbishop of Canterbury, George Carey, has joined the many supporting Lord Falconer’s bill for legislation to support assisted dying. His voice adds to the genuine concern, that people experiencing intolerable suffering at the end of life, should have the right to die at point of their own choosing.

I have been, although rarely, in positions when suffering has been impossible to relieve; intractable vomiting, leaking fistulas, difficult to manage pains, deep spiritual pain. And in these times, when patients have asked me to help them to die, I have wished there was another way.

I am not opposed to Assisted Dying.

There are many factors which need deep consideration as a Palliative Care professional in this debate. The role of the doctor in agreeing to and prescribing medication is discussed much better than I can by Dr Phil Berry here.

I do not feel sufficiently reassured by the ‘protections’ stated; mental capacity is very different from complex mental anguish and if anyone can tell me which of my patients with advanced COPD are going to die within the next 6 months I’ll give them my right arm. But these are debates for another day.

My discomfort, comes from the hijacking of the word dignity for this debate.

The word “dignity” is derived from the Latin, dignitas, meaning worthiness and nobility.

If one chooses to not decide the point of their death, are they not worthy or noble? Is death an indignity?

Claiming dignity for assisted dying removes it from the normal dying process and perpetuates the modern belief system that death is suffering, failure, pain, distress. Our fear of the dying process in a context of inadequately supported end of life care should not drive this decision. We can make a difference, we can enable dignity, it is not rocket science.

The chances of dying in hospital with dignity have reduced in the latest Voices Survey of Bereaved Relatives but I wonder what response you would have if you directly surveyed those who encountered the Royal’s Bereavement and Donor Alliance Service in Bolton with the inspirational @fionadmurphy. Watch this video and tell me why this doesn’t exist in all of our hospitals.

And District Nurses do it well, so do GP’s, lets build on that.

Dying needs good palliative and end of life care, there’s not enough of it and it’s not adequately funded. I fear a system in which we do not respect dying enough to provide essential components of care, but reach for extraordinary measures to medicalise and tidy up death. As @hospicedoctor so eloquently puts it

 

Where’s the dignity in that?

I have worked in palliative care for nearly 20 years and yes I have witnessed suffering and fear but I see it reduced and relieved too. I stay here because I witness spirit, powerful relationships, human strength, laughter, joy, love. I see death (the thing that is our one certainty) and all it’s complexities, the fights, the struggles, the acceptance (and not, that’s OK too) and it can be beautiful.

And the one thing I see above all this is dignity. Dignity in death.

We need to claim it back.