John’s Campaign

for the right to stay with people with dementia for the right of people with dementia to be supported by their family carers

John’s Campaign supports the right of people with dementia, and people with other disabilities or individual needs, to be accompanied by their family carers wherever care happens. Founded in 2014 by Nicci Gerrard and Julia Jones after Dr John Gerrard’s catastrophic decline during a hospital stay, it asks that nobody be cut off from the people who matter most.

Explore the campaign Visit the official website
Stay With Me

A single, simple message

“You are not a visitor. You are a partner in their care.”

That person may be a husband, daughter, partner, close friend or personal assistant. What matters is that the patient or resident relies on them for crucial emotional or practical support.

Wherever care happens.

Read the current guidance for family carers

How the campaign began

John’s story

John’s Campaign is named for Dr John Gerrard, a doctor and businessman who lived with Alzheimer’s for around a decade. At home with his wife of 61 years, his life was still contented and full of pleasure. In February 2014 he went into hospital with infected leg ulcers. A norovirus outbreak kept his family away for most of five weeks. He went in strong and mobile and came out skeletal, immobile and barely knowing those around him. He died that November.

“People need companionship and links to normality. They need to understand what’s happening to them and help to communicate effectively.”

Nicci Gerrard tells John’s story and explains why families need to remain part of care.

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June’s story

When June Jones (Julia’s mother) lived in extra care accommodation and then in a care home, Julia was always able to act as her primary carer. June was one of the first supporters of John’s Campaign and wrote a letter expressing her fear of separation and her need for loving support.

As the illness progressed June’s world shrank to the dementia nursing suite where she lived her last years. That care home was the first in England to make a John’s Campaign pledge. The mutually supportive partnership between June’s family and the professional staff helped her through physical deterioration and mental distress to reach the end of her life surrounded by love and the kindest care.

Julia talks with her mother June about the comfort of having familiar people close by in hospital, before they read through the letter June wrote together.

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John’s campaign is June’s campaign. June’s campaign is everyone’s campaign.
Nicci Gerrard, The Guardian, 25 July 2015
Read the full campaign history Read Nicci Gerrard’s Guardian article

Julia, Nicci and Golden Duck

Julia’s experience of caring for her mother June became part of both her writing and her campaigning. It is reflected in Beloved Old Age, in Julia’s Authors Electric archive on Golden Duck and in her work with John’s Campaign.

Julia and Nicci co-founded the campaign in November 2014. It continues to seek stronger legal protection while helping families and services understand the rights, safeguards and partnership practices already available.

Julia Jones and Nicci Gerrard standing together in a doorway
Julia Jones and Nicci Gerrard

Recent from John’s Campaign

Explore the campaign blog
Sarah Rose
BlogSarah Rose

Forced into a Care Home: This Could Have Been Me

This post first appeared on the blog of the Pathfinders Neuromuscular Alliance — in it, Sarah Rose, their Chair of Trustees, writes about the importance of independent living and support from carers, and her fear that this could be taken away from her and others with complex disabilities:

Read the article
Garry Perry
BlogGarry Perry

Hearing Patient and Carer Voices, Part 1 — From Visiting to Presence: Why “Partners in Care” Must Be the Future

(This is part of our Hearing Patient and Carer Voices series from Royal Wolverhampton NHS Trust and Walsall Healthcare NHS Trust.) Garry Perry is a leading voice in patient experience and co-design across The Royal Wolverhampton NHS Trust and Walsall Healthcare NHS Trust. Creator of the award-winning Little Voices programme, he champions approaches that put lived experience at the heart of improvement, shaping work…

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Zoe Christoffersen
BlogZoe Christoffersen

Hearing Patient and Carer Voices, Part 2 — Recognising Carers: Making “Partners in Care” Real Every Day

(This is part of our Hearing Patient and Carer Voices series from Royal Wolverhampton NHS Trust and Walsall Healthcare NHS Trust.) Zoe Christoffersen is a Family & Carers’ Support Officer at Walsall Healthcare NHS Trust.

Read the article
Andrew Rice
BlogAndrew Rice

Hearing Patient and Carer Voices, Part 3

(This is part of our Hearing Patient and Carer Voices series from Royal Wolverhampton NHS Trust and Walsall Healthcare NHS Trust.) Andrew Rice is Head of Patient Voice across Walsall Healthcare NHS Trust and The Royal Wolverhampton NHS Trust. His work focuses on ensuring that patients, families, and carers are not only heard, but actively shape how care is delivered and improved. He is a strong advocate for…

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Further reading

Three publications connected directly with John’s Campaign, Julia and Golden Duck.

Continue to John’s Campaign

Visit the official campaign for its current guidance, history, resources and continuing work.

Visit John’s Campaign