John's Campaign - and June's and 800,000 more - by Julia Jones

"Pet Therapy" - as approved by Dr Moreira
Pinned to my mother's sitting room wall is a small and slightly worn piece of paper. It's headed Dr Moreira's Good Advice.

Dr Moreira's title is Speciality Doctor Later Life Care Community Psychiatry and I hope she realises how invaluable she has been in helping my mother (and me) through periods of particular distress. My mother has both Alzheimer's and vascular dementia and there have been moments when I have feared that medication might be necessary. Dr Moreira asked us questions, listened to the answers and offered preliminary advice. This was the list I jotted down later:

Drink water frequently
Eat as healthily as you can
Take exercise but don't get over-tired
Avoid disorientation
Have some fun
Don't get ill

I remember thinking that the last one must be some sort of doctorly joke. Illness is something that just happens: you get it cured and carry on. People with dementia, however, are so sensitive that the slightest ailment or infection which the rest of us take in our stride can have a disproportionate impact on their mental as well as their physical health.

I began to realise how devastating illness might be for a person with dementia when I read Sally Magnusson's account of her mother's experience when she was admitted to hospital with a broken hip. After waiting all day (NIL BY MOUTH) for an operation that didn't happen, Magnusson's mother, Mamie Baird, was becoming more and more agitated. Her daughter asked to remain with her as night approached. She was refused. Magnusson's book Where Memories Go expresses her anguish:

“We feel helpless. Leaving you to face the night alone in this strange noisy place, frightened and achingly vulnerable, is like abandoning a scared child. No parent would do it. No parent would be expected to. Can anyone tell us the difference?”

Mamie Baird had an attack of delirium after her daughters left. “You have been shouting and raving all night, trying to pull the hydration drip from your wrist and haul out your catheter Overnight, wrestling with those invasive tubes and in terror of the touch of strangers you had plummeted to new depths. We thought your mind had gone for ever. Some people never recover.” 

I was in a surgical ward myself three years ago. The sound of abandoned, uncomforted dementia patients still haunts me. Anyone who has been in a general hospital ward will have witnessed similar scenes. This issue concerns us all, sick or well.

Over a quarter of hospital beds are currently occupied by people with dementia. They stay many weeks longer than other people of the same age admitted with the same medical conditions; 48% of them leave hospital less physically well than when they were admitted and 54% have deteriorated mentally. Far too many people with dementia in hospital will have been treated with anti-psychotic drugs in an attempt to muffle their distress and 36% of those who have been living in their own homes before admission to hospital will never be able to return.

These findings are from an Alzheimer's Society report, Counting the Cost: Caring for people with dementia on hospital wards. It was published in 2009 and it would be reassuring to think that all the highlighted issues had been successfully addressed. But they haven't.

In February this year my friend Nicci Gerrard's father John, a former doctor, was admitted to hospital to have leg ulcers treated. John Gerrard had been diagnosed with Alzheimer's in his mid 70s but was still managing to live a good, if limited, life in his own home, assisted by carers and his loving family. The hospital admission was catastrophic. He was there for five weeks and was almost entirely denied visitors as there was a norovirus outbreak. “For as long as I live,” writes Nicci Gerrard, “I will regret that we didn't understand sooner what this prolonged stay might mean.”

Nicci and her father on holiday last year
 “Five weeks. He went in strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilled daily life with my mother. He came out skeletal, incontinent, immobile, incoherent, bewildered, quite lost.” John Gerrard required 24 hour care for the rest of his life and died in November 2014.

This may seem some way removed from my mother's sitting room and Dr Moreira's Good Advice. John Gerrard blew it: he got ill. Maybe he'd have died anyway.

But look at the first items on that list: hydration and nutrition. People with dementia need to drink and eat. Simple as it sounds it's one of the things they can forget. Recommendation 8 of the Alzheimer's Society report is “Make sure people with dementia have enough to eat and drink.” This was written in 2009, three years after a 2006 report by Age Concern entitled Hungry to be Heard: the scandal of malnourished older people in hospital. Yet in 2014 John Gerrard comes out of hospital “skeletal”. This is our country in the 21st century. Okay, there was norovirus. But did John Gerard have to starve? It wouldn't have happened had his family been there.

I support the NHS workers, I'll sign petitions on their behalf and acknowledge all the good work that they do but how can it be acceptable that 68% of carer respondents in the Alzheimer's Society survey stated that their relative had not been helped to eat or drink sufficiently while in hospital? This is failure at a most basic level.

So what do we do? Reports have been written, initiatives are in place, political parties are girding up to make hospitals and the NHS their 'big story' at the next election but, as the daughter of a 90-year-old who is doing her best to abide by the good advice she has received but cannot guarantee never to get ill, I am not prepared to wait any longer while the professionals try to get their act together.

I hope that they will succeed. I support every step they are taking but I would like to point out that while I don't know about broken hips or leg ulcers, I am the specialist in my mother's “person-centred care” (a key recommendation of the 2009 report). I can usually understand what she is saying, I can offer her a drink, help her to the lavatory, talk to her and hold her hand. My mother often thinks that I am her mother: she trusts me as my children trusted me when I accompanied them into hospital and stayed with them day and night until I was able to take them home again.

My family and I and mum's friends and carers have spent a long time following Dr Moreira's Good Advice and trying our best to construct a framework of support that helps mum to live reasonably contentedly most of the time. And, although it's far from perfect, why should we let a hospital admission kick it all down and leave us to pick up the pieces afterwards?

Nicci Gerrard writes, “My father looked after people all his life. He was a good man who believed in the goodness of others. He was a man of dignity and integrity and optimism. Yet – with the best of intentions – we had to abandon him to a system that could not care for him in the way that he required. At his hour of need, we didn’t rescue him; we let him go. It needn’t be like that; it mustn’t.”

Together we have set up John's Campaign with the single aim: the right to stay with people with dementia in hospital. There are currently 800,000 people with dementia in the UK. Please support us and make it a campaign for everyone. If you have opinions to offer or your own experience to share you can contact us directly on Facebook or Twitter (@JohnCampaign) as well by post or via the website.
A letter of support

(A version of this article has been published on the Open Democracy website)


Kathleen Jones said…
Having lived in other countries where it is quite usual for relatives to stay with their family members when they are admitted to hospital, I think our system is barbaric. If the NHS can't afford to provide enough staff to give basic personal care, the right for a relative to stay with a patient in order to look after them should be mandatory. I'm supporting this campaign as much as I can. Let me know what I can sign or send, Julia.

A few years ago I had to leave a daughter, after a traumatic birth and an emergency caesarian, alone in a private room the hospital had given her because she was so ill. Her baby was placed in the room with her, but because she was on drips, doped with morphine, with rails on the bed, she couldn't get out of it to reach the baby, which cried all night. She also didn't have anything to drink. A member of staff put their head round the door and said they were sorry they were so busy and would come when they could. They didn't. Why couldn't I have been allowed to stay with her to give her drinks and look after the baby?

Technically we have a very good health service, but in terms of actual care for patients it fails miserably. The mental health area is a serious cause for concern, as well as provision for growing numbers of cases of Alzheimers. Many elderly suffers don't have close family members or devoted carers to look after them. Who is going to care for them either at home or in hospital?

When I was a young mum, I read Margaret Drabble's novel The Millstone which was written at a time when mothers weren't allowed to stay with their children in hospital. The wards were full of the sound of children screaming for their mums - some left hospital traumatised for life. It took a huge campaign to give mothers the right to stay with their kids. We need a similar campaign now for our parents.

OK rant over! Lovely blog, Julia - very moving. I hope some of the right people read it.

JO said…
I, too, have a tale of an old woman in the early stages of dementia abandoned in hospital - she had bed sores when she came out, sent home to a flat where there had been no heating for three months. They knew she had a chest infection, and told her to ring the GP when she got home. She fell on her kitchen floor that night, was discovered 10 hours later - still alive. She's now in a nursing home, as skeletal as a little bird. (She has no family - she is my godmother and so my concerns are dismissed as I cannot claim next of kin.)
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Jan Needle said…
not much more to say, julia. i'll put it on my facebook wall.
When my mum was ill with terminal cancer, I spent hours in hospital with her - not just in the hospice where she spent her last few months, but in the hospital where she had an operation to make her more comfortable. The nurses were invariably glad to see me. 'You give us one less thing to worry about and she's always better for seeing you' they said. But most of that was, I realised afterwards, down to the way in which the ward was run - the whole team was of the same mind. And it was a different story when she was admitted to another hospital later on, after breaking her leg. 'Don't think she'll get the same kind of attention in here as she does in THAT HOSPICE' said one of the nurses, viciously. I've never forgotten it and should have complained, but at the time, you are so embroiled in the pain of the situation that you don't. Fortunately, we managed to get her readmitted to the hospice as soon as possible. Add dementia to that and the situation of these patients in hospital is impossible. Most hospitals are not set up to cope with dying people and they are not set up to cope with people with dementia. They are, nowadays, there to sort you out as quickly as possible. Anything else and - in my experience - they handle it very badly.
julia jones said…
Thank you all. One thing we are doing is beginning to collect experiences and opinions on the John's Campaign facebook page. There's a nice little threat of posts to page which even includes a +ve experience. Emailing MPs is a good one for now, then after Christmas when we have a real portfolio we get marching on the NHS itself. Politically it'll be manifesto time too.
Mari Biella said…
There's nothing I can add to what has already been said, Julia, but I'll certainly support the campaign however I can.
Susan Price said…
From my own experience when my parents died, and from listening to friends' experiences, I've concluded that, as relatives of people in hospital, we should be prepared to be bloody-minded and difficult to the max.

I don't suggest this lightly. I know that it's one thing to say you will be, and quite another in practice. It also goes against our feeling that hospitals are 'caring' and we should be polite and grateful.

I wish that I'd been more aware of this earlier, when my parents were ill and dying. I often feel guilty that I didn't do enough for them, didn't fight their corner hard enough. I hadn't realised how necessary is is.

I'm mentally girding my loins now for the future, for if any of my family are ill. I'm trying to prepare myself to say, 'No,' when the hospital asks/tells me to leave. To say, 'Fetch the Police/Security - and when they arrive, I'll quietly and politely explain why I'm not going anywhere. And if you have me forcibly removed, I will be straight on to every newspaper, radio and tv station and blogger I know.'

Please don't think I'm saying, 'That's what you should have done.' I am not. I didn't do it.

I know it won't be easy - but perhaps it would be easier if there was a support group that you could appeal to? Civil disobedience in hospitals.

It's not only old people with dementia. I have a young friend who was seriously ill in hospital - and yet children who were in for very minor complaints were being allowed to run around the ward, screaming and playing loud music all night. My friend - who learned early that the NHS is often about convenience for the staff, not the patients - discharged herself, went home in a taxi, and was disccvered sound asleep on the sofa by her mother who had rushed home fom work to get ready for a trip to the hospital. She'd had to discharge herself and come home to get some sleep!

Father then went into hospital and made lots of noise of his own - which must have been a formidable sight, as he is 6ft 5, lean and bearded like a Biblical prophet.

I think we do need to be noisy, stroppy, unreasonable, angry and bloody-minded - and support each other in being so.

Thank you, Julia - excellent post.
julia jones said…
Yup - I'm considering bicycle chain permanently in handbag in case required to attach self to mum's hospt bed. The trouble is she'd hate there to be a row so best that I get me rights clear first. I discover in Bristol there is a Carer's Charter for rellies etc. If they can have one so can all the rest.
I agree with Susan. Trouble is, you often learn this kind of thing when it's too late.And for what can happen to you even when you're not particularly old, try this account recently published in the Scottish Review:
Dennis Hamley said…
I have so very much to thank hospitals for and most of the time I wonlt hear a word against them but this is aserious problem. I'm experiencing the clash between interests if staff above those of patients in a small, even insignificant way at the moment and I've fired my first shot in my tiny campaign. By comparison, though, this is a scandal. I read Nicci Gerrard's article in the Guardian with horror and yet realised it wasn't new to me. Now the NHS is being taken over by US aero-engine manufacturers we must be prepared to fight much harder. By the way, Blogger thinks I'm a robot for the second time this morning.
Enid Richemont said…
I have a very personal horror story to tell, which does very much relate to this subject. I'll try to make it as brief as possible.

As many of you already know, last year I lost my beloved David from a sudden heart attack in March. By the beginning of this year, I was still, and always will be, grief-stricken, but I was coping (and there's been a lot to cope with), and, apart from a badly sprained ankle, my health has been reasonably good.

In late April this year, I suddenly vomited copious quantities of dried blood - terrifying as I now live alone. After two days of not eating much, I was referred to the Royal Free Hospital in Hampstead, London, and after a five hour wait, seriously ill, shivering and alone (I'd been dropped off by a kind neighbour)I was finally admitted to a geriatric ward (well I am 60+!) where I stayed for two nights. There was no water unless you asked for it, and I wasn't allowed to eat as they were doing an endoscopy the following day. I don't want to elaborate on the ensuing errors and confusion here - it would take up far too much space - but in short, I went in as a basically healthy woman who'd been struck by something nasty (abdominal ulcers), and came out a very sick one. Six months later, I still haven't properly recovered from that trauma - next to losing David, it was the very worst experience of my life. They even managed to tick the 'dementia' box - I WAS demented, but with fury!! As for the three poor creatures sharing my ward, and who are possibly still there, I shudder to think. Yes, of course I'll support this.
Susan Price said…
Dear god, Enid... That is appalling.

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