Senior NHS managers can play a crucial role in helping to ensure that obstacles do not prevent the loved ones of people with dementia being with them in hospital, as Julia Jones explains

When I look at the most recent pledges to John’s Campaign and notice they include an ambulance trust, two dementia care centres run by Gatehead Metropolitan Borough Council, the third largest UK care home chain (HC_One), a 23 bed nurse led unit in a Lincolnshire community hospital and a specialist cancer trust in South Wales I wonder whether I should pinch myself to wake up.

John’s Campaign was founded in November 2014 to lobby for family carers to be welcome at any time if a person with dementia was admitted to hospital. That was all. My friend Nicci Gerrard’s father, who had been living well with dementia, declined catastrophically when an apparently simple admission for the treatment of infected leg ulcers mushroomed into a five week stay during which he lost all ability to function.

Flash of insight

There was no medical disaster (except, probably, unrecognised delirium). A combination of restrictive visiting hours and a noro-virus outbreak denied John Gerrard the support of his family. No one realised how much it would matter.

“But would we have let one of our children remain unvisited in hospital for five weeks?” Nicci and I asked each other, rhetorically. We remembered that the involvement of parents with sick children was something that had had to be campaigned for – by the same generation who need our help now.

Having experienced this flash of insight we naively assumed that all we needed to do was share the idea with the right people, all restrictions would be waived and the problem solved.

So we talked to the CEO of the Alzheimer’s Society, the president of the British Geriatrics Society, the chief nursing officers (ours is a UK wide campaign), the chief inspector of hospitals, the prime minister. All uniformly supportive.

Partnership by negotiation

Then we did get our idea to the right people. We got it to dementia nurses, ward sisters, delirium specialists, patient experience managers and to other family carers who had experienced the bafflement of discovering that their wealth of understanding and specialist knowledge was of little interest.

They had found themselves cast as visitors to their loved one’s lives, expected to leave at the ringing of a bell. Yet everyone knew that the outcomes for people with dementia in hospital were provably worse than for other adults of the same age and with the same conditions. Dementia is a disability. Equality legislation alone should be enough to prompt special arrangements.

With the help of the Observer newspaper we asked professionals to pledge their welcome to the carers of people with dementia. The welcome had to be unconditional and access 24/7 if necessary. Apart from that, people could manage the details however seemed best to them.

This was partly an admission of necessity: Nicci and I have no health service status; we are volunteers with other jobs and our own caring responsibilities. There’s no way we could scamper around enforcing compliance to pre-set conditions even if we wanted to.

‘Senior managers can give the internal permission that enables individuals to take the daily human scale decisions necessary to optimise family involvement’

Both of us believe profoundly that professionals know their own situations best. John’s Campaign therefore looks different in the accident and emergency department than in the elderly care ward; different in the theatre suite from the mental health unit: different again in the nursing home.

It’s also true that case-by-case negotiation is the only way partnership can work. Family carers have needs of their own and responsibilities beyond the person with dementia. There are useful questions that can be asked by professionals: “What do you usually do to support him /her?” “What can they do for themselves?” “What would you like to do to help in this new situation?” “What are you able to do?”

There are no standard answers. Nevertheless both the campaign and its adherents need input from senior managers. They can give the internal permission that enables individuals to take the daily human scale decisions necessary to optimise family involvement.

‘John’s Campaign will have achieved its purpose when partnership working for the benefit of people with dementia is the norm everywhere’

Senior managers can supply additional resources– bedside beds, for instance. They also need to ensure that understanding is spread throughout their organisation and everyone is encouraged to find their own way to maximise the benefits of family involvement. John’s Campaign has become a catalyst for change. It will have achieved its purpose when partnership-working for the benefit of people with dementia is the norm everywhere. Managers, thinking strategically, need to join the dots.

So who are we hoping to see in next month’s pledges? Epsom Health & Care (covering GPs, community services and Surrey County Council as well as the NHS hospital trust), NHS Shetland, a mental health trust in the Pennines, more care homes in the Isle of Wight, chivvied by their local newspaper to sign up collectively.

What do we dream of seeing? A sign-up from a clinical commissioning group? Nurse Directors or health boards working severally yet co-operatively across a UK country? Day by day, the single ward team, the single convinced care home manager, the single radiography department or GP practice will remain the basic nexus of person-centred partnership.

Julia Jones is co-founder of John’s Campaign.