John’s Campaign: three years old, November 30th 2017 Changing the culture of care?

Nicci Gerrard and Julia Jones founded John’s Campaign after the publication, in the Observer newspaper on November 30^th 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

Book Review: Please tell me…

Liz Charalambous is a nurse and PhD student. She tweets @lizcharalambou and is a regular guest blogger for the BGS. Here she reviews ‘Please tell me…’ by Julia Jones and Claudia Myatt.

Without a doubt, one of the most important documents in older person care is the Alzheimer’s Society This is me support tool. It enables carers to access information with which to provide holistic care and is underpinned by a social model of care rather than a medical model, so important in today’s world of fast paced, pressurised, and increasingly politicised healthcare services. It places the person in the centre of care, ensuring their likes, dislikes, and preferences are recorded for the whole team to access.

Indeed, a favourite teaching strategy when introducing new students to dementia care is to provide them with two copies of ‘this is me’ and ask them to take them home for their partners or significant others to complete in the manner of ‘Mr and Mrs’ style 1970s TV programme. I have heard many stories of students returning the next day reporting back to the group that their other half had failed hopelessly in filling in the form, prompting them to realise the precariousness of ensuring person centred care in such instances.

John’s Campaign Conference; Stay with me

Liz Charalambous is a qualified nurse on a female, acute medical HCOP (Health Care for Older People) ward at Queen’s Medical Centre, Nottingham University Hospital Trust. She was one of the speakers at the John’s Campaign Conference. She tweets at @lizcharalambou and is a regular guest blogger for the BGS.

I was proud to be invited to speak this week at the John’s Campaign Conference on 12^th October. The conference proved to be an oasis of light, love, and hope in the often gruelling and lonely journey of dementia. Nicci Gerrard and Julia Jones, co-founders of John’s Campaign, who both have personal experience of caring for loved ones with dementia, pulled together a groundbreaking and heartwarming conference, which was nothing short of miraculous. Nicci and Julia began what they described as a ‘kitchen table revolution’ to campaign to change the draconian restricted visiting arrangements of adult hospital care, advocating that people with dementia should have the support of their loved ones while in hospital.

Open (Nearly) All Hours

This year Heart of England NHS Foundation Trust became one of the first to introduce open visiting.  Dr Helen Chamberlain, a Consultant Geriatrician at Good Hope Hospital (one of the three sites run by the Trust), shares her experience of this innovation.

One of the drivers for our recent change in visiting hours was John’s Campaign.  This was started by Observer journalist Nicci Gerrard in November 2014 after death of her father Dr John Gerrard.  He had dementia, but during his admission for infected leg ulcers declined badly.  Nicci felt that had his family been allowed to visit as often as they wished, he would have been less distressed.

Expose the worst – but remember to praise the best

Professor Adam Gordon is Honorary Secretary of the British Geriatrics Society, a consultant geriatrician, and Honorary Associate Professor in the Medicine of Older People at Nottingham University Hospitals NHS Trust.

It can be tempting when faced with inadequate care for an older relative, to believe that all such care is inadequate. As someone who regularly advocates on behalf of older people with frailty, I know that I frequently feel let down by an NHS or long-term care sector that seems ill-equipped to care for older people.  Lots of things can get in the way: cumbersome bureaucracy, lack of expertise and training, a culture that at times seems obsessed with diagnosis and cure at the expense of comfort and care, and at other times seem almost unduly pessimistic about prognosis. This often seems to take place without consideration of the individual choices of patients or their carers, as the system strives hard to stay afloat by maintaining “patient flow”.

There is, in the midst of this, a need to campaign, to educate and to proselytize. We need to share how bad it can get, as a cautionary tale. The work of the families of mid-Staffordshire and of Morecombe Bay has been essential.  The work undertaken by Nicci Gerard and others as part of John’s Campaign, raising the profile of family carers on wards for older people, is something to which we should all be lending our support. The Panorama exposés on the sometimes scandalously poor quality of care in the long-term care sector are necessary. Yet if all we ever do is report the bad stuff, then we all – patients, families, carers and professionals in health and social care – might be left feeling bereft and believe that all is lost.