Welcoming a dementia patient’s carer to hospital needn’t be the subject of a campaign | Julia Jones

Julia Jones and Nicci Gerrard with staff at Imperial College Healthcare NHS Trust

Since November 2014, Julia Jones and Nicci Gerrard have been campaigning for the right of people with dementia to have their carers with them if they are admitted to hospital. Here, Julia considers what the campaign has achieved so far and the difference it's making for patients, carers and staff. 

Nicci Gerrard and I were proud to see John’s Campaign mentioned in the NHS Confederation report Growing old together. John’s Campaign asks only a small change: that all hospital visiting restrictions be waived for carers and that they be welcomed as key contributors to the best care for the individual patient.
Nicci and I took our initial inspiration from the 1960s campaign Mother Care for Children in Hospital (Action for Sick Children), which established access for parents. We hope that it will soon be as unthinkable for families to be turned away from their older members as it is for children to be separated from their parents.
The key principle in Growing old together is that the wishes of individuals and their carers should be respected. If we put ourselves in the older person’s shoes, it’s easy to understand that involvement for those closest to us is what we ourselves would want – as long as we were sure that we were not being ‘a burden’. 

Many older people are deeply unselfish and worry about the impact their needs have on their families. Everything we, as a society, can do to support and reward carers has the potential to reduce that insidious feeling of guilt. 

There are obvious material steps that providers can take (car parking reductions, meals subsidy, carer support services), but the biggest is in the smile of a welcome and the overt endorsement of the importance of that fundamental human relationship at the heart of care. “They like you being here, Jul” whispers my 92-year-old mother, with relief. 

John’s Campaign is UK-wide, and the different ways it has been interpreted reveal that this single simple change – if thought through holistically – has the potential to enhance all areas of care for older people. Wishaw Hospital in Scotland, for instance, has reorganised its emergency admissions department to ensure that vulnerable patients never suffer the stress of being separated from the person who has accompanied them. 

Additionally, as soon as an older patient arrives, there is a nurse whose duty it is to make proactive contact with the family or care home to collect information about the patient and to ascertain the level of personal support available. The nurse told me that many families are surprised to be contacted in this way – some are even suspicious. As soon as they understand why she is calling, they are glad to help. Families need to know they matter.

John’s Campaign has been formally adopted by over 250 UK hospitals or hospital wards (see the list published by The Observer). In Northern Ireland, a supported-living scheme has asked to be added to the list, and endorsement is promised from two nursing homes in a vanguard area in Yorkshire. 

In her recent report Dementia: More than just memory loss, Sarah Rochira, the Older People’s Commissioner for Wales, has made establishing access for carers a key requirement for all Welsh health boards. 

In England, the 2016/17 commissioning for quality and innovation (CQUIN) list includes implementation of John’s Campaign as an option for acute hospital and mental health trusts. In Surrey, a local variation of the CQUIN will go further and include all community providers.

Two hundred and fifty hospitals sounds fine, but the figure refers to individual hospitals, not trusts. In some cases, only a handful of wards within a hospital have signed, though we all know people with dementia may be admitted almost anywhere. 

There is clear evidence that welcoming carers has specific quantifiable benefits, such as reducing falls and the incidence of delirium. It improves nutrition, hydration and the maintenance of general functioning. Communication is facilitated, there is greater satisfaction and fewer complaints. So what stops providers from welcoming carers?

I hesitate to suggest lethargy. It is perhaps fairer to suggest that when an institution feels under stress, the prospect of yet another change may bring sighs, not cheers. Yet once the change has been implemented, ward staff should find their load has been lightened and managers will see their outcomes improve – but the process does challenge some established attitudes.
Staff confidence may be an issue – nurses on adult wards have not developed the same skills at working with families as their colleagues in paediatrics. Some families can be awkward, but most need only guidance and this can easily be provided with clear documents and policies. We are doing our best to collect helpful examples on the John’s Campaign website

Good will and good management are all that’s needed – and surely we can help each other with this? We need a concerted effort, now, to make the principle of John’s Campaign universal for the benefit of us all. 

Welcoming a vulnerable patient’s main supporter is so basic it should not need to be the subject of a campaign: it should be a given.

Julia Jones is a campaigner for John’s Campaign. Follow the campaign on Twitter @JohnCampaign.

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