Caring for carers is the right thing to do

In the very early days of John’s Campaign, Nicci Gerrard and I were taken to put our case to an eminent director of nursing in a large London hospital. “I can imagine what you’ll be like in two years’ time,” she said. “You’ll be burned out from rushing around and you won’t have achieved anything. I’ll see if my team can do something innovative for you.”

That was the last we heard from her. Evidently she saw two earnest middle-aged women who had no idea what they were getting themselves into – and thus far she was right. What she didn’t see was all the ordinary nurses, patient experience specialists, geriatricians who were either already welcoming family carers to support their patients or who were open-mindedly ready to make the change because they could see it was the right thing to do.

Currently there are over 1,150 institutions pledging Carers Welcome via the Observer newspaper list. Not all of them are hospitals, over a third of sign-ups now come from social care, including HC-One, the largest UK residential home operator.

A survey in the UK

To mark our three years of campaigning (yes, we are tired but we are not burned out) I undertook a survey of progress in the four countries of the UK. Jean White, chief nursing officer in Wales, had already looked at the evidence that all seven of the Welsh Health Boards, plus the Velindre Cancer Trust and the Welsh Ambulance Service, were either fully signed-up to welcome carers or had definite plans in place to implement this.

The response in Wales has been from the grassroots but Jean White confirmed that it now has government endorsement. “John’s Campaign is specifically referred to in the new National Dementia Strategy for Wales soon to be published by the Welsh government.”

In Northern Ireland we have depended crucially on Dementia Strategy Leads Seamus McErlean (social care commissioner at the Health and Social Care Board) and Eleanor Ross (nurse consultant at the Public Health Agency). They have ensured that there is reference to John’s Campaign in the Regulation and Quality Improvement Authority nursing home and residential care home standards; that it is included in training for dementia carers and has been promoted across a range of organisations.

A regional Delirium information leaflet has been produced which includes the important contribution of carers during a hospital admission. Although the current NI Dementia Strategy is coming to an end, there remains a commitment to continue to promote a welcoming approach to carers into 2018 and beyond.

Scotland’s chief nursing officer Fiona McQueen has always considered John’s Campaign as “entirely in keeping” with her government’s policy on supporting people in hospital. She’s passionate about person-centred care but has waited, cannily, while different health boards establish their own way to make patient-centred visiting a reality.

NHS Lanarkshire (and particularly Wishaw General Hospital) has been a trailblazer for John’s Campaign, closely followed by NHS Forth Valley and others. NHS Fife had already established “Partners in Care” and NHS Grampian has the excitingly inclusive “Welcome Wards” concept.

Last week the Scottish nurse directors came together and agreed that doing nothing was no longer an option. Scotland is committed to establishing open visiting in all its hospitals during 2018 – not the free-for-all, #wholestreetvisiting people rightly fear, but a managed welcome to the people who matter most to patients’ wellbeing.

Most inequitable

English nurses were the first to respond and England remains the most varied, most imaginative, most inequitable of the UK countries in its welcome to carers. Many staff are asking the wider question of how restricted visiting can continue to be justified at all.

’If you start off with that principle [that families matter], it isn’t that the journey isn’t going to have a few bumps along the way but actually all of them can be overcome by just sticking to that principle that it’s the right thing to do’

Consider the 2015 revision of the NHS Constitution: “NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers.” If it’s the middle of the night and you’re ill and scared in hospital and you need your mum, the 1961 Mother Care for Children in Hospital campaign ensured that she’s welcome by your side. If in 2017 your mum needs you – and you’re able and willing to be there – how can anyone lock you out?

In the earliest days of our campaign Birmingham Children’s Hospital chief nursing officer Michelle Mcloughlin explained how they manage a situation where 250+ people want to stay overnight every night in cramped Victorian conditions – and how staff ensure that patients can still rest, that hygiene is not compromised, that observations are taken seriously and that the care that is given in hospital extends into the remainder of those families’ lives.

“If you start off with that principle [that families matter], it isn’t that the journey isn’t going to have a few bumps along the way but actually all of them can be overcome by just sticking to that principle that it’s the right thing to do.”

As Nicci and I move into 2018 (which we are determined should be our retirement year) we need to ensure that this “right thing” becomes policy in England as it has elsewhere. We know CNO Jane Cummings and colleagues will help as far as is in their power.

Currently the NHSE Patient Experience team is working with Age UK to address the particular challenges in mental health trusts. The involvement of two Surrey clinical commissioning groups shows how efficacious commissioners could be in establishing fairness across a locality. But where is the decisive leadership? Pass.

Perhaps everyone who has read this far could search the Observer list, check our map and ensure that “the right thing” is happening in their area at least?