John’s Campaign, three years old: changing the culture of care?

Nicci Gerrard and Julia Jones founded John’s Campaign after the publication, in the Observer newspaper on 30 November 2014, of Nicci’s article about the death of her father Dr John Gerrard. They tweet @JohnCampaign

John’s Campaign advocates for the removal of all restrictions on family carers supporting their relatives in hospital and a positive attitude of welcome and collaboration throughout the health and care system.  It places no duty on informal carers and imposes no specific procedures on professionals – other than making their welcome explicit. Dementia is a disability as well as an illness: access to this additional level of support (if available) should be a right for people living with dementia. Information, contacts and resources can be found on the John’s Campaign website www.johnscampaign.org.uk

Currently John’s Campaign asks for a positive opt-in. Wards / hospitals / trusts / care homes / other institutions (eg ambulance service) pledge their welcome to carers in no more than 50 words which are published on the Observer’s national Carers Welcome list as well as on the John’s Campaign website. Over 1150 locations across the UK have already made this commitment. Crucially the response has come (in hospitals anyway) from individual nurses and patient experience staff who see this change as both compassionate and sensible. Establishing this culture of openness and partnership-working has brought clear benefits to the individuals living with dementia and those closest to them (who need support themselves). It has also benefitted the participating institutions, changing the atmosphere of wards, increasing overall levels of satisfaction and making best use of current resources.

In every country of the UK there appears to be a majority acceptance of the John’s Campaign principle in hospitals, though there is a long way to go in other areas of the health and care system. In Wales and Scotland a welcome to the carers of people with dementia in hospitals will be underpinned by government policy. John’s Campaign is supported by all four chief nursing officers as well as by charities (notably Age UK, Carers UK and the Alzheimer’s Society), professional groups (such as the British Geriatrics Society and the Faculty for Psychologists for Older People) and Royal Colleges (such as the Royal College of Nursing and the Royal College of Psychiatry).  The most recent to declare its support – the Royal College of General Practitioners – may be particularly influential.  In England and Northern Ireland there is some involvement from the regulators; those in the other countries have not yet been approached. This omission is one among many and highlights the first problem that needs to be addressed if welcome and support for the carers of people living with dementia is to become established practice everywhere:

Capacity

John’s Campaign is run by two unpaid part timers and a volunteer website manager. This has often been a strength; adherents cannot be passive, they see what needs to be done to implement the principle of welcome in their settings then get on and do it using their own initiative and their professional knowledge. There is a willingness among participants to help each other either by sharing of resources or advice and experience. John’s Campaign has many friends and a particularly dedicated group of Ambassadors. However this lack of capacity means that many potentially useful sources of help have not been systematically approached (Healthwatch organisations, CCGs, Health and Social Care partnerships, Care Associations). In the large and diffuse world of residential care lack of time for outreach and follow up means that messages are unlikely to reach the uninterested or unwilling and can leave some potentially interested individuals feeling isolated or unsupported. This may lead to a lack of quality and depth in their sign-up which will then fail if they move on without embedding their good practice.  This leads to a more serious problem

Inequality

Because the implementation of welcome and partnership-working (symbolised in hospitals by the removal of visiting restrictions) depends on the understanding and initiative of people who have heard about the campaign, and those in strong networks, it has resulted in a degree of patchiness which is evident from the JC map and from the country and sector summaries below. Anyone who is interested in checking the situation in their own locality can use the search facility on the Observer list. We need to make this cultural change universal – just as parents’ rights to be with their children in hospital became universally accepted in an earlier generation.

We believe that, after three years, John’s Campaign is close to achieving all that it can in its original incarnation and that it, and the people who support it – and those who will benefit from it – need action from top management, established networks and policy makers.  Fortunately, in most of the UK countries, there are real possibilities that this will happen.