Saturday, 9 June 2018

The Domesday Book of John's Campaign pledges 2015-2018 by Julia Jones

The Great and Little Domesday Books in c19th bindings (wikipedia) 


A 186 page survey, split into two sections -- Acute and Mental Health Trusts --  the Great and Little Domesday. A potentially fascinating source, I believe, chronicling one particular aspect of the English NHS in a moment of sociological transition. That’s what I’ve been compiling over this last fortnight.

When Nicci Gerrard and I set out in late November 2014 to establish the rights of carers (family members and particular friends) to stay with people with dementia if they were admitted to hospital – and the rights of those people to have their carer with them – we assumed this was something quite simple.  We would make our case, people in authority would agree, a regulation or two would be rearranged and the job would be done. John's Campaign a passing phase. 

We had not grasped the extraordinary structural muddle left as the aftermath of the Lansley ‘reforms’ of 2012. Wherever we went – to the NHS England Patient Experience department, to the Chief Nursing officer, to the Department of Health – people agreed with our suggestion but denied utterly that they had any power to make it happen. Visiting arrangements were the responsibility of each individual hospital – or hospital ward, they insisted. It was up to the ward sister. The problem with that was that Sister A might be a genial soul, happy to see her clinical space full of friends and relatives cheering up her patients, whereas Sister B might see visitors only as dirty feet on her polished floors, unhygienic bottoms on her beds and irritants interrupting the sacred Ward Rounds by asking ignorant questions about their relatives’ health. Who knew which day each Sister would be on duty and what if your relative, already disoriented by their dementia, were moved from one ward to another?

Photo taken in BCH hospital toilet --
120 parents staying in this small hospital
every night is probably an underestimate
It was the Chief Nurse of a children’s hospital who raised the heretical notion that hospitals were (or should be) publicly owned spaces where any of us had a right to be, whenever we chose, as long as we were not causing a nuisance. But who would define nuisance? When this wonderful woman refused to leave her mother’s bed side in a neighbouring hospital she was threatened with Security to remove her. (She didn’t go) Perhaps a campaign of civil disobedience was what we needed? I seriously considered whether I should carry a length of bicycle chain in my bag and hook myself to the bed rails. But who actually wants to be having a row with Security when the aim of the visit is to comfort and to reassure?

The same magnificent Chief Nurse  raised the question of Human Rights. The right to family life, for instance – if you had been married to your dear wife for 60 + years, honouring your vows to comfort  one another in sickness and in health, was it not plain wrong that you should be expected to get up and leave her side when some young nurse jangled the ward bell for the end of Visiting?  How had you become a Visitor in her life? There’s Equality legislation too: if dementia is a disability as well as a disease, then welcoming a willing human communication aid (a carer) should be as axiomatic as trying to ensure that the patient keeps their spectacles, dentures and zimmer frame with them. Perhaps what Nicci and I needed was a legal campaign?  Find a friendly pro bono lawyer and mount some test case to oblige the NHS to recognize the provisions of its own constitution? We shrank from the idea.

Nicci (right) negotiating
Individual persuasion was all we could contemplate, though the prospect was daunting. The Observer offered space on its website to host a list of hospitals pledged to welcome (willing) carers whenever the patient needed them. There were no criteria. All that the hospital – or ward, department, health board, trust – was asked to do was write a 50 word pledge to this effect. And they did. 

A pledge from Royal United Hospitals, Bath: 
“Carers and families of people living with dementia are welcome on our wards at all times. Our commitment is to listen, and to do what we can to support you in providing ongoing care to your relative or friend. After all, you know the person best.”

But there were so many of them. Something between 140 – 150 Acute Hospital Trusts, covering varying number of hospitals and service locations in each. And perhaps 60 – 70 mental health and community trusts. Plus the three other UK countries. The Observer opened its list in July 2015 and it’s taken until now for all of the English Acute Trusts to make the necessary commitment. English Mental Health and Community Trusts are only half way there. Although this is not an acceptable situation, it is a significant milestone and we are poised to celebrate Great Domesday by presenting a book of Acute Trust pledges to Chief Nursing officer Jane Cummings on Monday (June 11th 2018)

Then, at the midwinter [1085], was the king in Gloucester with his council ... . After this had the king a large meeting, and very deep consultation with his council, about this land; how it was occupied, and by what sort of men. Then sent he his men over all England into each shire; commissioning them to find out "How many hundreds of hides were in the shire, what land the king himself had, and what stock upon the land; or, what dues he ought to have by the year from the shire."

Over the past couple of weeks I have been doing my best to contact every one of the 140 + Acute hospital trusts which constitute my Great Domesday: check that they know what they have pledged, ask whether they want to update or extend it. I’ve requested a statement of support from some senior person, usually the Director of Nursing, confirming that welcoming and supporting carers is something that matters to them. I've also asked for an image illustrating how, in practical terms,  they are making their welcome real. 

A pledge from Weston General Hospital:
“We offer carers cards to family members and carers who accompany their loved ones during a hospital stay. These enable carers to receive a hot meal on the ward or discounted meals from the hospital canteen and subsidised car parking. We want to recognise their contribution and help them feel a little cherished.”
Results are not complete – I just haven’t had enough time. My heart goes out to those 11th century assessors, tramping the midwinter lanes to enquire “how many hundreds of hides were there in the shire, what land the king himself had and what stock upon the land.” I don’t imagine they were always made very welcome: the information was being collected to assess what taxes might be due. I’ve been conscious myself that the NHS is awash with campaigns and initiatives at present. Most of my initial tweets and emails to hospital comms departments have sunk into the slough of cyber despond.

newly purchased recliner chair
for more comfortable stays
But once I have begun talking to people and stated my business -- used the words Johns Campaign -- the answers have been breath taking. From the early, uncertain, fifty-word pledges agreeing that carers could come if they wanted (but there wouldn’t be any special overnight facilities and they must step outside if there’re asked and mustn’t disturb anybody) hospitals across England have been printing  welcome posters and preparing carers information & support packs.

They have been negotiating car parking and meals discounts, offering comfort bundles, buying recliner beds and refurbishing forgotten spaces to provide carer refreshment rooms. In many wards the clinical atmosphere has changed and this has resulted in fewer incidents of violence, fewer falls, a reduction in the acute confusion that can lead, dangerously to delirium.

And all this has been going on NOT because the king decreed it – the English NHS is a feudal system with no one on the throne – but because ward and department staff (nurses above all) have decided it is the right thing to do. 

So they’ve been doing it and our hospitals are changing. John’s Campaign is usually now being understood to apply, not just to people with dementia but to anyone who is dependent on someone else in their everyday life; in many hospitals visiting hours are being made more flexible for everyone, in some places they are being done away with altogether. Sister A has routed Sister B. Crucially, hospital staff are happy and proud of the changes they are making because the more humane and open systems they are developing are what they want for themselves and their own relatives.

A Lead Dementia Nurse from Croydon wrote: I feel it is really important that services that provide care to people living with dementia involve carers as they know the person best, and this can help us (health care providers) deliver an enhanced level of care to those individuals. From my own personal experience my father would have struggled if visiting times were not relaxed when he was taken into hospital whilst living with vascular dementia. Seeing familiar faces throughout the early morning and during the day and night meant that for most of the time he was settled on the ward and was not continuously looking for those that he loved. It also meant that we were able to advocate on his behalf and ensure he received the care and treatment that he deserved.

So, in fact, my John’s Campaign survey of hospital pledges -- to be presented to Jane Cummings, and published on Monday – is not like the Domesday Book at all.


You can download it on Monday from https://johnscampaign.org.uk/#/voices/4

8 comments:

Jan Needle said...

Keep up the great work.

Dennis Hamley said...

Julia, this is amazing, inspiring and every other adjective there is to describe a really great work. To pierce stifling levels of bureaucratic inertia, to assert the rights of concerned relatives (rights which are already upheld superbly in one institution I know of) and cause the essential humanity of the NHS, which all of us expect and most of us receive, in these troublous times, is an achievement of which everyone shoukd know.

By the way, I have a small book of dementia poems by Wendy Macnay, co-facilitated (her words!) by her granddaughter Rox Austin, about whom I have told you, to send you.

Bill Kirton said...

Dennis has already used the word 'inspiring', and that was my first reaction to this wonderful blog (in a sequence of equally inspiring reports). You have given so much time and energy to the campaign that you should allow yourself some pride at its evident success, Julia. Many hundreds must have secretly thanked you over the years, and more will continue to be added to their number. Thanks again.

julia jones said...

Dear Jan and Dennis and Bill, that's very very kind and comforts me for the fact that I'm still sitting at my desk trying to ensure everything I've been sent is included. Long to be on the river or writing a book -- or writing a book on the river....

Lydia Bennet said...

An incredible achievement Julia (and Nicci). I'm in awe of what you've done and are doing. It's time all hospitals realised that it's in their own interest that carers are there - when someone with dementia is in hospital, often for some unrelated condition, they are just left there in bed apart from a brief ward round, confused and angry and scared. Or in hospital parlance, 'difficult', wandering, intruding on others, trying to go home. When I was working as a writer with long-stay hospital patients, staff were especially keen I should spend time with those with dementia for this reason.

julia jones said...

What has been so moving, really, is that hospitals are realising it and do want carers to stay. The other side of the coin is for families to understand this as well -- stop thinking of hospital as a safe place and realise that, for people with dementia it's anything but ... Nicci has been talking to Royal Coll of GPs to try to get info out to people via surgeries, without being alarmist

Dipika Mukherjee said...

This is such necessary and good work! May your tribe increase to make healthcare more humane wherever we may be in the world.

Sandra Horn said...

What you have achieved in your quiet, courteous, persistent way is utterly breathtaking! Heartfelt thanks and all good wishes for your continuing success.