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 12th 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.
The conference paid a poignantly fitting tribute to Kate Granger as we wrote our names on stickers which bore the legend #hellomynameis. The day began with a warm welcome from Professor Janice Sigsworth, Director of Nursing at Imperial College Healthcare NHS Trust who introduced Nicci and Julia. Nicci described the experience of caring for her father following a five-week hospital admission for leg ulcers which left him malnourished, immobile and incontinent. Once discharged home he subsequently died. She spoke very movingly, yet with such profound dignity and understanding about the pressures of the system, how nurses and doctors were trying their best under difficult circumstances, and how her father drifted away despite their best efforts to bring him back. In her own words, ‘he entered hospital articulate and able, he came out a broken man’. She spoke of how unimaginable it would be for a child to be left alone in hospital nowadays, so why do we accept the same for our precious older relatives when they need comfort in such a strange and confusing environment?
We had the honour of being introduced to Nicci’s mother in person as she bravely took the stage; and Julia’s mother, June via video. June had written a letter ‘ to whom it may concern’ which has become the flag of the campaign. It articulates, better than anyone else could, her concerns of a person living with dementia being admitted to hospital with an acute illness, and being unable to let staff know her needs.
The day flew by as we heard harrowing and uplifting, distressing and inspiring stories of dementia care.
Next to speak was Paul Webster, deputy editor of the Observer newspaper, who has backed John’s campaign from the start, following a modest and dignified request for help from Nicci. The newspaper has since provided support by offering a platform to reach out to others and amplify the voice of John’s Campaign.
Jeremy Hughes (CEO of the Alzheimer’s Society), Jane Cummings (Chief Nursing officer for England), and Professor Alistair Burns (National Clinical Director for Dementia and Mental Health in Older People) offered essential support and reminded us of the urgent need for dignity in dementia care. Jane Cummings told us how John’s Campaign puts compassion at the heart of healthcare and told us of her plans to map John’s Campaign against the new NHS England leading change, adding value strategy.
After coffee we re-joined for the ‘Voices’ section of the day. I was proud to speak for all the nurses who have been striving for this change for years. As part of my MSc in Advanced Nursing, I have spent the past 3 years writing about and working on a leadership project to change hospital visiting for frail, older people with dementia at Nottingham University Hospitals NHS Trust where I work as a Staff Nurse. The project was supported by Nottingham Hospitals Charity who generously funded the carer’s passport. As a result, the hospital policy has now been changed to ensure that people with dementia who are admitted to hospital with an acute illness now have the comfort and support of their loved ones at any hour of the day or night. My voice joined those of others; people living with dementia, carers, doctors, social workers, all of whom have been striving for a positive change in the quality of dementia care. In turn we came together to tell our stories from a kaleidoscope of perspectives and hope that by sharing our stories we can be a catalyst for change. Our unified voices a reminder that nurses and carers often have the same concerns and there is a willingness to work together.
We later heard from Michelle Mcloughlin (Chief Nurse of Birmingham Children’s Hospital Foundation trust) how adult care can learn from paediatrics . Our own Professor Rowan Harwood of NUH NHS Trust presented his research into creating a medical and mental health unit at Queen’s Medical Centre, Nottingham to improve dementia care in acute hospital settings. Gillian Corbett (Chief of Nursing Services Wishaw General Hospital) also spoke of her work improving the care of people with dementia.
After lunch we listened to some wonderfully uplifting music courtesy of OPUS who visit hospitals with the aim of reaching people through song, and improving the experience of being in hospital through music.
Professor David Oliver (Consultant Physician at Royal Berkshire Hospital and President of the British Geriatrics Society) spoke of overcoming the obstacles and encouraged us to continue to keep telling our stories. He emphasised that carers know the patient best and are crucial partners for staff. He is a shining example of how collaborative working with carers and families can, and does work, having embraced open visiting even before John’s Campaign and would never go back. Simon Hatch (Director of Wales Carer’s Trust) spoke of his mission to spread the word in Wales.
Amanda Cheesley (RCN Professional Lead Long Term Conditions and End of Life Care) spoke eloquently about how crucial it is to get end of life care right and the importance of a ‘good death’.
While hearing the passion and enthusiasm of various speakers I managed to hold my emotions in check up until the point Sheila Wainwright from Wakefield took the podium. She described the woefully inadequate treatment of her beloved husband in hospital. A lengthy wait in the casualty department was followed by long waits in hospital corridors to see him. She described how she begged the staff for her to be allowed onto the ward, only to see her beloved husband restrained to a chair throughout his hospital stay. Her quiet dignity matched only by her anger at her impotence when faced with being refused admittance to see her dying husband filled me with shame that my profession could do this to another human being.
Immediately following Sheila came, for me, the highlight of the day, which was hearing Anita Ruckledge MBE (Dementia Lead Nurse at Mid Yorkshire Hospitals Trust). Anita is a breath of fresh air, a shining light and a beautiful soul who swept away any lingering doubt that John’s Campaign is the right thing to do. She and her team have worked wonders transforming dementia care at Pinderfields Hospital in Wakefield and showed us a video of the marvellous family support rooms which offer comfort and hope for families in their final journey with dementia. She told us the story of one patient who was able to listen to his favourite opera singer while holding the hand of loved ones just minutes before he died.
Now this is the reason why I came into nursing.
Her grace and passion will stay with me for a long time. Anita Ruckledge reminds us that John’s Campaign brings the heart back into nursing in what is now a business driven context of healthcare.
The day closed with a question time and discussion of what happens next chaired by Neil Churchill (Director for Patient Experience at NHS England). We all went away highly emotionally charged and ready for the next stage of John’s campaign. Zealous partisans strengthened and joined together by such a simple and humane philosophy.
Yet despite all the tears and emotion, Nicci bravely and generously reminds us that this campaign is not about sorrow, it is about rescue. John’s Campaign is about enablement not confrontation. For those who are still in any doubt, the conference reminds us that John’s Campaign is a shining example of how, by sticking to a principle, every other issue can be resolved. John’s Campaign will continue to go forward, as someone said at the conference, the genie is out of the bottle and won’t go back in.
This is because John’s campaign is created from love, driven by tireless passion, and sustained by collaboration.
Follow @johnscampaign on twitter and the tweets from the conference #jcconference
Read more from Julia Jones in her book Beloved Old Age and what to do about it.