You Want One of These: a tale of three bits of paper (the Preferred Place of Care form) by Julia Jones

Piece of Paper 1: a Book of Pledges
Bertie applauds as Nicci
presents the pledge book
to CNO Jane Cummings
It was 0800 on a Monday morning. Not any Monday morning, it was The Monday Morning that I was going to London to NHS England with the Book of Pledges for Nicci Gerrard and myself to present to Chief Nursing Officer. Putting it together had felt epic– but now there were half dozen neat copies, printed out and comb-bound and right-hand-man Bertie was ironing his clean white shirt.
I was still in my dressing gown. I’d been to bed silly late and up silly early but all I had to do now was find something suitable to wear and get into the car for the station.

The phone rang. It was Jo, the nurse on duty at the Moat House where my mother lives. Mum had had a fall. She was on the floor, screaming, and the paramedics who were already there thought she should go to hospital for an X-ray. Jo wanted guidance.

I burst into tears. This was one of God’s bad jokes. At that moment the trip to London seemed to represent something I had wanted and worked for over three years. Every one of the 1400 Carers Welcome pledges now on the Observer list had been worked for and recorded by me.  Nicci had written and spoken many powerful and beautiful words, Bertie had typed thousands (possibly millions?) of lines of computer code but at that moment the pledge list felt like Mine-All-Mine.

I was wrong of course. Ownership of the pledges remains with the people who made them. God must have noticed my hubris and sniggered as he spotted a way to put the record straight.

Piece of Paper 2: a letter
My mother had also contributed words. In the early weeks of John’s Campaign (2014) she’d insisted on writing a letter for Nicci and me to take on our visit to the Alzheimer’s Society.

Mum had visited hospital as an outpatient and had benefited from eye treatments but had never been admitted. When endoscopic investigation was offered for possible bowel cancer, she'd declined it. Her letter and everything I knew about her makes it clear that the only circumstances she would consent to spend time in hospital was if she needed treatment for a broken bone. 

Now, aged 94, here was that suspected broken bone and here was I, a weeping wreck in my dressing gown because I didn’t want to stay with her in hospital, I wanted to go to London.

I rang my own daughter, Georgeanna, who Mum loves and trusts and who works nearby. She said she could hurry to the Moat House immediately and travel with Mum in the ambulance. As I rang Jo to tell her what was happening, I could hear Mum’s screams. I rang Nicci and sobbed down the phone. I gave Bertie my precious pile of print-outs and a string of incoherent instructions. Then, finally, I washed my face, got out of that dressing gown, packed a few things in a bag and set off to the hospital, prepared to stay for as long as it took.

Piece of Paper 3: Preferred Place / Priorities for Care
The form Mum had signed
four years earlier in Suffolk
I wrote down my impressions later that evening. The section in bold is all you need to read.

Georgeanna and paramedics hand Mum over and leave. The usual incomprehensible waiting with no idea what happens next or how long. Mum begins to wonder about wanting a wee. Hard to know how to help as back injury suspected. 
Time passes people in and out  rather rough but cheerful person comes in grabs trolley heaves mum off to the next stage which I suppose is assessment unit?
Another side room, another wait. I hear outside that there is some anxiety as they have two Hazels.  I keep telling them my mother’s preferred name is her second name, June. Usually this just causes them anxiety.

Two people – a staff nurse and another – come into the room “We hear she’s not Compliant” one says and the other starts telling me about Mental Capacity and how they’ll need to take bloods and Mum won’t be able to consent. They really sound threatening. I do my damnedest to say No. To explain Mum’s situation; that she is here for an X ray on her back and pelvis,  she does not want any other treatment, unless her bones are broken and can be mended. I feel frightened that the staff are going to start sticking needles into Mum. She’ll fight. Then they’ll need to restrain or sedate her. This will turn nasty.

I claim my right to speak for her. As her daughter who visits every day. I try the phrase ‘her primary carer’. They ask if I have power of attorney papers. I start the usual explanation that ours is an ‘enduring’ not a ‘lasting’ POA, that my brothers have the document but decisions of daily care are delegated to me.  I mention that the CCG (Clinical Commissioning Group) has recently accepted my right to advocate for Mum, as her Continuing Health Care needs have been assessed.

They say that none of this matters. Even if I had POA papers with me they would be following their own judgement what’s in Mum’s best interests. I get cross. They have only just met Mum they know nothing about her, they're struggling even with her name!  How can they make such an assessment?

“You’re going to treat her against her will?”

“Oh no,” and they begin to explain that this won’t be against her will because they’ll have done a Mental Capacity Assessment. I assume this means that they’ll assess that she hasn’t the capacity to consent or withhold consent at this stage in her life -- therefore nothing can be said to be 'Against her Will'. Treatment will therefore be assessed to be in her Best Interests. Whether she wants it or not.

“No!” I say, -- and this is my moment of inspiration. “ You can’t do that because when Mum did have the capacity to consent, she said No. We have a Preferred Place of Care form. It’s lodged in the Moat House with her care plan and her DNR (Do Not Resuscitate) form.” 

I begin to explain what this Preferred Place of Care form is (at least what I think it is) is but they start to look bemused and tell me I’ll need to have that conversation with the doctor. I feel embarrassed that I haven’t noticed the other person who has joined us. A sweet-looking young woman in a headscarf. The two tough-talking nurses leave me alone with her.

I ask for her name (I keep asking for names). It’s D (actually I've just taken this out as don't want to embarras her). She begins to explain that Mum may have fallen because she’s getting an infection. She begins to tell me about all the different routine blood tests Mum should have and probably a precautionary chest X ray. She’ll need blood pressure taken (Mum hates this!), various samples, possibly a scan and then they’ll decide whether to admit her -- for observation. If they find she’s got a UTI (urinary tract infection) they can keep her in and give intravenous antibiotics.

I feel as if we’re on some terrifying conveyor belt going somewhere that we never meant to go. I dig my heels in hard.  I explain that when Mum did have capacity she would not have consented to all of this.  I tell the doctor about the Preferred Place of Care form that Mum and I filled in with her GP when she also completed the DNR instruction. If she is getting an infection then she wants it treated by her own GP in her own place. We have only come here for an X ray because the paramedics were worried that she may have broken her back.

Suddenly Doctor D gets the point that we are refusing all other treatment than what we came for – an X-ray on Mum’s back and hips – (plus whatever might subsequently be necessary in case of a confirmed fracture).   Finally she stops explaining procedures and begins to investigate Mum's back.  Mum is fairly relaxed and so am I now. This is what we came for. Nothing much seems wrong but when the doctor tries to help Mum sit up, she screams.  A lumber X ray is ordered, plus X ray of hips, everything else rejected.  The doctor looks relieved and understanding.  She explains that what I see as the conveyor belt of 'routine' blood tests and waiting for results and further 'precautionary' X rays and possible admission for 'observation' is “ just the way we do things here.” I think she’s quite glad she doesn’t have to do them this time. All because of my form!

More waiting. No water, food, comfort.  I have a bottle with me. Drip it in Mum’s mouth as best I can. Check with doctor that it’s okay to offer Mum a biscuit.  Ask for help to get her sitting up so that mucus can clear away from her throat. There’s talk of pain relief but nothing comes. Mum still wants a wee.

It's a while before we are collected for X ray. There’s a moment when I hear someone say, “There’s a daughter with her. She seems to know her mother quite well.” A security person takes the trolley. She is quick and rough. A nurse comes with us. She doesn’t speak either to me or to Mum.

Mum is getting agitated by the time we reach the X ray dept. She’s wanting to get off the trolley. Radiographer comes “I’m going to put a bit of a tilt on.” She heaves up the bottom end of the bed so Mum is unable to get out.  I go along with this restraint remembering that Mum is here because the paramedics think she may have back damage. We need these X rays. There is no question of me not being welcome to help with this process. I have a protective garment on and hold Mum as still as I can, reassuring her, while they get the shots they need. It's a cleverly designed trolley;  the radiographer slides her plates in underneath where Mum is trapped. The radiographer is as efficient and as kindly as she can be.  

All the same Mum isn’t liking it. Her agitation levels are increasingly hard to keep in check as we return to assessment unit. She’s uncomfortable and I am conscious that she still wants that wee.  I tried earlier to ask for a bed pan but all seemed too difficult when there was still a question of possible back or hip damage.

Radiographer says there’s no damage visible on X ray. Back in the unit the doctor confirms this. Mum is getting really stressed and trying to climb out over the side bars of the trolley, which is still tilted up like a soup plate. She's ordering me to go away and leave her. I think this is getting dangerous. I can’t leave her so I call out of the door for a nurse to get the trolley back to normal and help her stand up. Then I ask where the toilet is and if Mum can finally have some pain relief.

Finally we make it to the toilet and as I help Mum out of the overnight pad she’s been wearing for so many hours. I discover a bright pink plastic butterfly inside. Rigid two inch wingspan, can't have been very comfortable. Mum releases the vast quantity of wee she’s been retaining and I help her back to the side room.  I ask if she can have a cup of tea. The nurse offers to make some for me as well. She’s called Zoe.  This is a highpoint of our visit.

The chairs in our side room are hard. I sit Mum down for her tea which for a while is good. But then the discomfort increases and she is exhausted and anxious and there’s still no pain relief and we seem to have been forgotten. She gets up and begins to shuffle round, asleep on her feet, bumping into things. She’s obviously desperate to rest but she can’t get back on the bed. It’s too high and I can’t help her.  Someone from the hospital dementia team comes wanting to do an assessment. I say we don’t need an assessment, all we need is help to make Mum comfortable and get her back to the Moat House, to Willow, the dementia unit where she lives. He tries and fails to help me lower the bed and goes away clutching his uncompleted form.  

No one seems to have any plan for getting us out of there. I can’t settle Mum. She continues tottering around blindly, pawing at the walls, pulling at tubes and power cables. I ask again for pain relief. Nothing comes. I ask about transport. No one knows so I ask if I can organise this myself. The doctor says yes but she’ll need to complete the paperwork. She can do it straight away. 

So I ring Georgeanna to take more time away from her work and collect us.  Mum hasn’t been in a car for months but she is so heart-wrenchingly bewildered and exhausted and agitated that I am determined we are going to get her back to her own bed.  Knowing that she has not broken anything is a real strength.  All of this was probably worth it for that. Probably.

I make more fuss and finally we get pain medicine. But no paperwork. Georgeanna has arrived and I decide we’re leaving anyway.  Mum is pitiably dead on her feet. We bundle her into the car and we’re gone. Home to the Moat House and Willow Suite.

That form!
I wrote these impressions of our hospital visit when it was still fresh in my mind. Since then the Moat House care staff and I have been dealing with the repercussions of what was, for Mum, a traumatic experience. It wasn’t until today, writing this, that I looked up the piece of paper I’d so successfully cited to fend off all those precautionary measures that would have added yet more time and stress to our stay. In most places it’s not called Preferred Place of Care, it’s called Preferred Priorities of Care and it’s intended for people who are nearing the end of life. (As are we all.) I bless Mum’s GP for putting it in front of us at such a relatively early stage -- when Mum could enter into a reasonable discussion. Mum was 90 then, vulnerable and living in 'Very Sheltered' accommodation. I was sixty miles away. The doctor believed that if Mum was ill -- not necessarily  dying -- she should have the option to be treated in her own place. That's what Mum wanted too.

This seems to  have been some sort of East Suffolk initiative -- but what a good idea, and how effective, even when I was in a mid-Essex hospital, citing it with such innocent confidence. Maybe we should all have one of these?

And PS  if you live in England and want to know what your own hospital trust has pledged to carers -- our book is available to you 


Susan Price said…
Julia -- what can I say? Wonderful blog but so heart-breaking.
Bill Kirton said…
I can only echo Susan, Julia. How sad,sad,sad it all is, how painful for you - and your mum, and how heart-rendingly stressful for all concerned, of course. I only wish you all peace and no more such agonies in the coming days.
Penny Dolan said…
I can hardly think how to comment on all this anguish, Julia. Such a relatively simple procedure made so much harder and rougher for your poor mother - and for you. The needs of the system coming before the patients needs and wishes, or that's how I feel on reading this.

Thank you for the post, though. Good wishes for the ongoing campaign and those essential documents.
Jan Needle said…
Again, thank you, Julia.
julia jones said…
It was salutary for me -- but I have a sort of hope that Age UK might be persuaded to do something more about people's right to say no to treatments. It's all got a bit too big for us, I think. Thank you, as ever, for your support and understanding.
Umberto Tosi said…
My heart goes out to you, having cared for my mother during her last years many years ago. I wish you all the best, and hope for good outcomes to all this somehow moving forward. You've written beautifully about the experience, evoking compassion and serious thought about the medical ethical issues involved.
Lydia Bennet said…
This is all so exhausting for all concerned, and so inhuman. People with dementia are very ill-served by the system - any system. They are morally blamed for being 'difficult' or angry (when they are justifiably scared), yet treated as mindless. They have a physical disease which causes physical damage but are treated as just old and dim, but not really ill when it comes to some kinds of care. Your mum is so lucky to have you and all the family rooting for her and working so hard for all of our loved ones. I vividly recall my mother fracturing her foot and the hospital doc ignoring us and only consulting her, as a mark of respect for her age and individuality - dementia is probably the one exception to this otherwise good rule! She kept insisting nothing was wrong. Of course, every second, she forgot the injury, though not the pain. When we finally got her home in a plaster cast, she kept forgetting it was there and being outraged about it - my father found her in the bath, soaking it and hacking at it with a bread knife to get it off as she was of course 'completely fine'. thank you again for all your efforts Julia.
Unknown said…
What an absolute horror story Julia. So sad that this is still the scenario in any E.D.
Hope June is feeling better (and the daughter too).
Unknown said…
Dear Julia, I want to give you a hug. So sorry that this happened, it resonates with me. I spent all night with my Dad in A and E following him around for most of the time. I often get a call of some incident when I am away visiting my husband's family a precious time with our lovely nephews.Thank you for sharing and your advice
Aroo14 said…
A heart rendering story but one that I experienced in a similar form with my father. It was more complex and he was actually close to end of life but the forceful approach I had to take to ensure he didn't end his life in a hospital bed was very disappointing. All too often I hear similar stories and it's only the campaigns like this and people like Age UK who help remove these issues and improve it. We have a long way to go to get there but every person and campaign who raise these issues up helps ensure that at least for some this kind of treatment will improve.
It's such an awful story I am full of admiration that you've expressed it all so well. You would think with all the advances in medicine that have happened over the past 70 years, they would have made equal advances in the process of caring for people, but that often isn't the case, apparently.

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