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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

We are Core Participants in Module 3 of the UK COVID Inquiry, together with Care Rights UK and The Patients Association.

Home

The Lister Hospital (part of East and North Hertfordshire NHS Trust) offers Carer Passports, as do many other welcoming hospitals and trusts

Find your hospital or home's pledge to support John's Campaign on our Participants page.

We know that families come in all varieties. They're not always genetically related and sometimes it is a close friend who matters most. We believe that individuals are their own best judges who is essential for their emotional or practical well-being. We think that, wherever possible, they should be asked and their wishes respected.

Legally carers are people who provide personal care, support and assistance to another individual who is in need of support due to disability, medical condition, including terminal or chronic illness, mental illness or is frail and aged.

Our campaign can apply to anyone with a special need and is therefore in line with Equality legislation as well as human-kindness and common sense.

We believe that carers should not just be ‘allowed’ but should be welcomed. They are the experts in the person for whom they care and best outcomes are likely when they work in partnership with the medical or social professionals. Often they have legal duties such as power of attorney or court of protections deputy. They can observe and advocate: communicate, remember, explain and reassure.

However family carers often have other responsibilities. They have a right but not a duty to continue to care.

John’s Campaign applies to all hospital settings (acute, community, mental health). We have come to realise that its principles must extend to all other caring institutions where people are living away from those closest to them.

Over 1500 institutions have pledged support in the time since the campaign was founded in November 2014 by Nicci Gerrard and Julia Jones.

The current coronavirus pandemic has tested their commitment beyond anything they or we could ever have imagined. Thank you to all who still honour your Carers Welcome pledge.

John's Campaign is not a tick box exercise: it's an attitude of mind which respects the rights and choices of the person who needs care and values the essential input of the informal carer (or family member) as well as the expertise of the professional. Everyone has a part to play in this.

About

The campaign’s name honours Dr John Gerrard, who was a doctor and a business man, and diagnosed with Alzheimers in his mid seventies. It was a slow decline, that sped up when he was ill or upset, for ten years. Then, at the start of February 2014, he went into hospital. He had infected leg ulcers which weren’t responding to antibiotics. The hospital had a norovirus outbreak which meant visitors weren’t allowed at all. He was there for five weeks.

John went in strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to keep clean, to have a good kind of daily life. He came out skeletal, immobile, incoherent, requiring 24-hour care and barely knowing those around him.

His family are sure that if he had not spent that time alone, without them, he would not have descended into such a state of deep delirium. Having someone with you - someone who you love, who you know, whose face you know (be they your carer, your family, your friend, your lover) - helps keep you tied to reality, to life, to sanity.

John died in November 2014. His story, however, is still repeated. Far too many people die cut off from the people who care for them. Far too many places have dangerously over-restrictive policies (both predating and during the present pandemic) preventing people from being with people who need them.

In the wake of his death, John’s daughter, Nicci Gerrard, cofounded John’s Campaign with Julia Jones, whose mother, June, also lived well with dementia (both Alzheimer’s and vascular) for many years before her death in 2018. John’s Campaign is June’s Campaign, is Everyone’s Campaign, for none of us should be blocked from our best, most special friends, family or carers.

Blog

John's Campaign tries to give people a voice - to share information, experiences or enthusiasm. Our blog page is at the heart of this though you will also find personal experience on the experiences page and plenty of information via articles and resources. We have a public Facebook page and a care home and support group for care home managers as well as relatives. Interacting on Twitter is also very important to us. Blog posts are shared via Twitter and Facebook. If you have something you'd like to write about please contact julia@johnscampaign.org.uk.

The posts include the ‘Why I Love My Job’ series, which celebrates working in health and social care So far this series has featured activity facilitators, carers (both family and professional), carers liaison officers, chefs, directors, managers and nurses. Use this to share your personal enthusiasm for your work, whether paid or voluntary.

Resources

My Visiting Plan, a form through which patients with dementia (with assistance of family/carers as necessary) can express their wishes regarding visitors: Who do you want to visit, who don't you want to visit, when do you want them to visit and when do you want to rest?

Along the way, we’ve built up a collection of resources. These are shared on this site for assistance and inspiration, and are of a number of types: banners; carer awareness training, badges, charters, definitions, handbooks, information, passports; evaluations; family rooms; recliners; support packs; welcome posters…

Everything we host here can be used by you, but please give acknowledgement where appropriate.

Supporters

Over 1500 hospitals and homes (and some others, such as ambulance trusts, clinical commissioning participants, domiciliary care companies, hospices and primary care providers) have pledged to support our principles of inclusion. We believe that people, particularly those with dementia, other mental illnesses, or otherwise in need of care, should not be separated from those important to them by protocols and systems that are harmful and wrong.

Many other influental individuals and organisations have expressed their support and partnered with us, a list of some of them is shown on our Partners page.

We are unrepayably indebted to all those who have helped us and carried the torch of change, of civil liberties, of common sense, of human rights.

We are Core Participants in Module 3 of the UK COVID Inquiry, together with Care Rights UK and The Patients Association.

Home

The Lister Hospital (part of East and North Hertfordshire NHS Trust) offers Carer Passports, as do many other welcoming hospitals and trusts

Find your hospital or home's pledge to support John's Campaign on our Participants page.

We know that families come in all varieties. They're not always genetically related and sometimes it is a close friend who matters most. We believe that individuals are their own best judges who is essential for their emotional or practical well-being. We think that, wherever possible, they should be asked and their wishes respected.

Legally carers are people who provide personal care, support and assistance to another individual who is in need of support due to disability, medical condition, including terminal or chronic illness, mental illness or is frail and aged.

Our campaign can apply to anyone with a special need and is therefore in line with Equality legislation as well as human-kindness and common sense.

We believe that carers should not just be ‘allowed’ but should be welcomed. They are the experts in the person for whom they care and best outcomes are likely when they work in partnership with the medical or social professionals. Often they have legal duties such as power of attorney or court of protections deputy. They can observe and advocate: communicate, remember, explain and reassure.

However family carers often have other responsibilities. They have a right but not a duty to continue to care.

John’s Campaign applies to all hospital settings (acute, community, mental health). We have come to realise that its principles must extend to all other caring institutions where people are living away from those closest to them.

Over 1500 institutions have pledged support in the time since the campaign was founded in November 2014 by Nicci Gerrard and Julia Jones.

The current coronavirus pandemic has tested their commitment beyond anything they or we could ever have imagined. Thank you to all who still honour your Carers Welcome pledge.

John's Campaign is not a tick box exercise: it's an attitude of mind which respects the rights and choices of the person who needs care and values the essential input of the informal carer (or family member) as well as the expertise of the professional. Everyone has a part to play in this.

About

The campaign’s name honours Dr John Gerrard, who was a doctor and a business man, and diagnosed with Alzheimers in his mid seventies. It was a slow decline, that sped up when he was ill or upset, for ten years. Then, at the start of February 2014, he went into hospital. He had infected leg ulcers which weren’t responding to antibiotics. The hospital had a norovirus outbreak which meant visitors weren’t allowed at all. He was there for five weeks.

John went in strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to keep clean, to have a good kind of daily life. He came out skeletal, immobile, incoherent, requiring 24-hour care and barely knowing those around him.

His family are sure that if he had not spent that time alone, without them, he would not have descended into such a state of deep delirium. Having someone with you - someone who you love, who you know, whose face you know (be they your carer, your family, your friend, your lover) - helps keep you tied to reality, to life, to sanity.

John died in November 2014. His story, however, is still repeated. Far too many people die cut off from the people who care for them. Far too many places have dangerously over-restrictive policies (both predating and during the present pandemic) preventing people from being with people who need them.

In the wake of his death, John’s daughter, Nicci Gerrard, cofounded John’s Campaign with Julia Jones, whose mother, June, also lived well with dementia (both Alzheimer’s and vascular) for many years before her death in 2018. John’s Campaign is June’s Campaign, is Everyone’s Campaign, for none of us should be blocked from our best, most special friends, family or carers.

Blog

John's Campaign tries to give people a voice - to share information, experiences or enthusiasm. Our blog page is at the heart of this though you will also find personal experience on the experiences page and plenty of information via articles and resources. We have a public Facebook page and a care home and support group for care home managers as well as relatives. Interacting on Twitter is also very important to us. Blog posts are shared via Twitter and Facebook. If you have something you'd like to write about please contact julia@johnscampaign.org.uk.

The posts include the ‘Why I Love My Job’ series, which celebrates working in health and social care So far this series has featured activity facilitators, carers (both family and professional), carers liaison officers, chefs, directors, managers and nurses. Use this to share your personal enthusiasm for your work, whether paid or voluntary.

Resources

My Visiting Plan, a form through which patients with dementia (with assistance of family/carers as necessary) can express their wishes regarding visitors: Who do you want to visit, who don't you want to visit, when do you want them to visit and when do you want to rest?

Along the way, we’ve built up a collection of resources. These are shared on this site for assistance and inspiration, and are of a number of types: banners; carer awareness training, badges, charters, definitions, handbooks, information, passports; evaluations; family rooms; recliners; support packs; welcome posters…

Everything we host here can be used by you, but please give acknowledgement where appropriate.

Supporters

Over 1500 hospitals and homes (and some others, such as ambulance trusts, clinical commissioning participants, domiciliary care companies, hospices and primary care providers) have pledged to support our principles of inclusion. We believe that people, particularly those with dementia, other mental illnesses, or otherwise in need of care, should not be separated from those important to them by protocols and systems that are harmful and wrong.

Many other influental individuals and organisations have expressed their support and partnered with us, a list of some of them is shown on our Partners page.

We are unrepayably indebted to all those who have helped us and carried the torch of change, of civil liberties, of common sense, of human rights.