In 2016, the BGS Newsletter carried an article on John’s Campaign. We now report on the progress of the campaign and over this and the next issue, will be looking the its spread throughout the devolved nations.
The campaign was instituted by Nicci Gerrard and Julia Jones, after the publication, in the Observer newspaper on November 30th, 2014, of Nicci’s article about the death of her father Dr John Gerrard.
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.
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
Positive opt in
Currently John’s Campaign asks for a positive opt-in. Wards / hospitals / trusts / care homes / other institutions (e.g. 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 1,150 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 all the devolved nations 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 reported in this and the next issue of the newsletter. 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.
John’s Campaign in Wales
Chief Nursing Officer Jean White has confirmed that, “John’s Campaign is specifically referred to in the new National Dementia Strategy for Wales, published by Welsh Government.” She added, “when the draft of the strategy was shared with key stakeholders the inclusion was warmly received”.
The pioneering Health Board in Wales was Betsi Cadwaladr University Health Board (BCUHB), which has since removed all visiting restrictions from all its hospitals. Delyth Fon Thomas, the Ysbyty Gwynedd nurse who was the first to sign, is a delirium specialist and has surveyed the carers who have used the open visiting on her ward.
She concludes that, “Collaborative care leads to increased health and wellbeing for individuals living with dementia.” Her research showed that carers benefitted emotionally and felt better able to fit their hospital time with the other responsibilities of their lives.
BCUHB and Powys Health Boards, Velindre Cancer Trust and Welsh Ambulance Service Trust are all fully signed up to John’s Campaign, Aneurin Bevan University Health Board has all dementia wards signed and is energetically promoting welcome to carers throughout all areas of all its hospitals, Abertawe Bro Morgannwg University Health Board has begun the sign up process, Cardiff & Vale, Hywel Dda, Cwm Taf University Health Boards are all working towards implementation.
The Office of the Older People’s Commissioner has been influential in pushing for this change and is now engaging with Public Health Wales to develop a community approach.
So far, the only residential homes signed up in Wales come from HC-One and Hallmark as part of their overall support originating in England.
John’s Campaign in Northern Ireland
Northern Ireland’s CNO, Charlotte McArdle, is pleased by “the long list of areas that have been working to implement the campaign”. There is some involvement in all the Health and Social Care Trusts except for the Ambulance service. Most notable, currently, is the Western Trust, which has implemented the welcome to carers through its residential homes as well as in its hospitals.
The establishment of John’s Campaign in Northern Ireland has 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). Among their successes they count getting reference to John’s Campaign into both the revised nursing home and residential care home standards. These are monitored by the RQIA during regular inspections. They have also included John’s Campaign awareness in their bespoke training for dementia carers and promoted it across a range of organisations, including to nursing directors and CEOs. A regional Delirium information leaflet has been produced which includes the important contribution of carers during a hospital admission.
Team member Nichola Cullen from Belfast writes: “For my Delirium improvement work we have engaged across all 15 hospitals to promote extended visiting as part of improvement of experience for patient and their families/carers. We have included this in the regional Delirium information leaflet as well as staff training which has reached nearly 3000 staff in the past two years […] I can confirm that in my engagement with care of elderly wards Belfast and Southern and South Eastern trusts definitely promote and use the campaign locally.”
This is a more structured and thematic approach than in other UK countries, though in Northern Ireland too individual initiative has been crucial. Eilish Morris, manager of St Julian’s Supported Housing Scheme in Omagh, was the first person in the UK to see the value of promoting this families-welcome approach outside the hospital setting.
Paula Thompson, team leader of the dementia team at Downe Hospital, the first nurse in Northern Ireland to sign-up to the campaign, used it, with a suite of other initiatives, to improve the holistic care of her patients and also their end-of life care. She and her team have been rewarded by many grateful letters from families as well as an industry award from the Alzheimer’s Society.
While the current NI Dementia Strategy is coming to an end there remains a commitment to continue to promote a more welcoming approach to carers as dementia discussions continue in to 2018 and beyond.
In the next issue, we will cover progress in England and Scotland.
Nicci Gerrard
Julia Jones
Founders of John's Campaign