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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.

Voices IV

NHS England: Carers Welcome

John's Campaign Pledges from the Acute Hospital Trusts, Mental Health and Community Trusts, and Clinical Commissioning Groups

On Monday June 11th 2018, we presented English CNO Jane Cummings with this book of pledges from all NHS trusts in England. It marks an important point of the campaign's development: the point at which all English Acute NHS Hospital Trusts have made some sort of pledge to support John's Campaign and our principles of open visiting and carers welcome. Some are still piloting schemes in one or a few hospitals, but many have taken pre-existing pledges and upgraded them to cover the entire trust.

You can download the PDF of the book here, or read the introduction below:

This book is for Jane Cummings who has been Chief Nursing Officer for NHS England all the time that this work has been being done.

We would like to thank you, Jane, for supporting this work with your heart as well as your head and always being ready to think about the experience of families and loving friends in hospital from a personal as well as a professional perspective.

As a nurse leader you have championed the 6Cs of nursing: care, compassion, courage, communication, commitment and competence. You will find plenty of examples of those qualities in this book. You have encouraged nurses to take a new pride in their work and to take initiative and responsibility. That’s what so many of them have been doing, together with all of their colleagues who work in England’s hospital system.

The first pledges to welcome carers of people with dementia into hospitals without restriction were published on the Observer list in July 2015. It has taken almost three years to reach this point where all of the acute hospital trusts in England are committed to welcome carers, though it is not yet universal through all their services, nor in the mental health and community sectors.

The first section of this book focuses on the pledges from the acute trusts, 152 of them. These include the specialist hospitals who have historically had accommodation available for family members and have not therefore been a focus of our campaign. (You have only to look at the example of Liverpool Heart and Chest Hospital, however, to see how far a true welcome can extend beyond the mere provision of accommodation.)

The first general hospital trusts to pledge were Imperial College Healthcare in London and the two Bristol trusts. They were soon followed by others and within a few months we had reached our First Hundred. These trusts hold a special place in our hearts.

Returning to look at their pledges almost three years later, the differences are striking. Many of those first hundred pledges were limited to the elderly care wards and people often declared nervously that they had ‘no special overnight facilities’. When they have been asked to look at them again, to be included in this presentation to you, almost everyone whose pledges were limited, has asked for them to be upgraded. People have tackled the challenge of overnight support, have bought camp beds and recliner chairs and provided carers rooms and meals at staff prices. They have understood that a welcome to carers needs to extend throughout the hospital, from the admission department to the discharge lounge and all the specialist treatment facilities.

For the purposes of this book, the acute trusts were offered the opportunity to provide a supportive statement, ideally from someone quite senior, and an image illustrating the way they have put their pledge into practice. Very often the initial decision to pledge had been made by someone at a grassroots level — a dementia nurse or a ward manager but for Carers Welcome to become an embedded way of working, not dependent on any individual personality, the most senior managers must take ownership. And they have. You will read some impressively heartfelt and clear thinking statements from your Director of Nursing colleagues.

Likewise it seemed important, for this book, that there should be some concrete evidence that these pledges were actually being put into practice. That’s why we asked for an image. The time to collect these has been very short indeed so it’s been fortunate that over this last few years people have been sharing their resources in order to assist their colleagues in other trusts. The John’s Campaign website, built and maintained by Bertie Wheen, has become a repository of resources. These may be material things such as posters, passes and information packs but they are also records of experience in articles, blog posts and videos. This book will be a resource in itself and will be hosted on the website.

Hundreds (and I think I mean that literally) of people have contributed to this book. I’m grateful to all the communication officers who responded to our urgent pleas for material; to all the patient experience and safeguarding leads, the carer liaison workers and dementia nurses to whom they went for information; to the people who had already remembered to record what they were doing via their external hospital website.

No one could find us more time, however, so when you see pages which are not as well filled as you might expect, do not necessarily assume that the material was not there, only that there were not sufficient hours in the day to get it. Your colleagues in NHS Improvement are interested in taking this work forward. We hope this book will be useful to them but more that hospitals will use it as a way of learning from each other.

The three year period that has been covered here has also been a period of intense activity by major charities (The Alzheimer’s Society, Age UK, Dementia UK, Carers UK and the Carers Trust are the ones that we know best) as well as by the NHS itself and major institutions such as the Royal Colleges. (Consider the evidence collected by the National Audit of Dementia for instance.) We are certainly not claiming that John’s Campaign has been anything other than a catalyst that has sometimes helped people to remember the most basic human relationships that are vital to us all, from the beginning to the end of our lives.

People who are living with dementia have constantly guided and inspired us. It’s a shame that none of those who we invited to today’s celebration were able to attend (as far as I know). I would like to pay tribute to members of our own families who have been with us through this. That’s our partners and children, of course, but it’s the survivors from the older generation who have mattered most directly. Our campaign was inspired by Nicci’s father (we wish it had not been) and it was a poignant moment when Nicci’s mother Pat stood with her to open our London Conference in October 2016.

In the first weeks of the campaign my mother June wrote a letter on our behalf, which she can no longer remember, but which has touched the hearts of many. A photograph, taken with a cameraman and reporter on the day we reached our First Hundred and Anglia TV came to interview her, remained a cherished possession long after she’d lost any concept who those people had been. She hadn’t much idea at the time but they were warm and friendly and interested in her. That was enough. Emotions survive long after memory, reason, verbal communication and all other abilities are gone.

That’s probably what the whole campaign has been about. Thank you for accepting this record of the moment that the English Hospital Trusts have reached now.

Julia Jones & Nicci Gerrard (11.6.2018)

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

Voices IV

NHS England: Carers Welcome

John's Campaign Pledges from the Acute Hospital Trusts, Mental Health and Community Trusts, and Clinical Commissioning Groups

On Monday June 11th 2018, we presented English CNO Jane Cummings with this book of pledges from all NHS trusts in England. It marks an important point of the campaign's development: the point at which all English Acute NHS Hospital Trusts have made some sort of pledge to support John's Campaign and our principles of open visiting and carers welcome. Some are still piloting schemes in one or a few hospitals, but many have taken pre-existing pledges and upgraded them to cover the entire trust.

You can download the PDF of the book here, or read the introduction below:

This book is for Jane Cummings who has been Chief Nursing Officer for NHS England all the time that this work has been being done.

We would like to thank you, Jane, for supporting this work with your heart as well as your head and always being ready to think about the experience of families and loving friends in hospital from a personal as well as a professional perspective.

As a nurse leader you have championed the 6Cs of nursing: care, compassion, courage, communication, commitment and competence. You will find plenty of examples of those qualities in this book. You have encouraged nurses to take a new pride in their work and to take initiative and responsibility. That’s what so many of them have been doing, together with all of their colleagues who work in England’s hospital system.

The first pledges to welcome carers of people with dementia into hospitals without restriction were published on the Observer list in July 2015. It has taken almost three years to reach this point where all of the acute hospital trusts in England are committed to welcome carers, though it is not yet universal through all their services, nor in the mental health and community sectors.

The first section of this book focuses on the pledges from the acute trusts, 152 of them. These include the specialist hospitals who have historically had accommodation available for family members and have not therefore been a focus of our campaign. (You have only to look at the example of Liverpool Heart and Chest Hospital, however, to see how far a true welcome can extend beyond the mere provision of accommodation.)

The first general hospital trusts to pledge were Imperial College Healthcare in London and the two Bristol trusts. They were soon followed by others and within a few months we had reached our First Hundred. These trusts hold a special place in our hearts.

Returning to look at their pledges almost three years later, the differences are striking. Many of those first hundred pledges were limited to the elderly care wards and people often declared nervously that they had ‘no special overnight facilities’. When they have been asked to look at them again, to be included in this presentation to you, almost everyone whose pledges were limited, has asked for them to be upgraded. People have tackled the challenge of overnight support, have bought camp beds and recliner chairs and provided carers rooms and meals at staff prices. They have understood that a welcome to carers needs to extend throughout the hospital, from the admission department to the discharge lounge and all the specialist treatment facilities.

For the purposes of this book, the acute trusts were offered the opportunity to provide a supportive statement, ideally from someone quite senior, and an image illustrating the way they have put their pledge into practice. Very often the initial decision to pledge had been made by someone at a grassroots level — a dementia nurse or a ward manager but for Carers Welcome to become an embedded way of working, not dependent on any individual personality, the most senior managers must take ownership. And they have. You will read some impressively heartfelt and clear thinking statements from your Director of Nursing colleagues.

Likewise it seemed important, for this book, that there should be some concrete evidence that these pledges were actually being put into practice. That’s why we asked for an image. The time to collect these has been very short indeed so it’s been fortunate that over this last few years people have been sharing their resources in order to assist their colleagues in other trusts. The John’s Campaign website, built and maintained by Bertie Wheen, has become a repository of resources. These may be material things such as posters, passes and information packs but they are also records of experience in articles, blog posts and videos. This book will be a resource in itself and will be hosted on the website.

Hundreds (and I think I mean that literally) of people have contributed to this book. I’m grateful to all the communication officers who responded to our urgent pleas for material; to all the patient experience and safeguarding leads, the carer liaison workers and dementia nurses to whom they went for information; to the people who had already remembered to record what they were doing via their external hospital website.

No one could find us more time, however, so when you see pages which are not as well filled as you might expect, do not necessarily assume that the material was not there, only that there were not sufficient hours in the day to get it. Your colleagues in NHS Improvement are interested in taking this work forward. We hope this book will be useful to them but more that hospitals will use it as a way of learning from each other.

The three year period that has been covered here has also been a period of intense activity by major charities (The Alzheimer’s Society, Age UK, Dementia UK, Carers UK and the Carers Trust are the ones that we know best) as well as by the NHS itself and major institutions such as the Royal Colleges. (Consider the evidence collected by the National Audit of Dementia for instance.) We are certainly not claiming that John’s Campaign has been anything other than a catalyst that has sometimes helped people to remember the most basic human relationships that are vital to us all, from the beginning to the end of our lives.

People who are living with dementia have constantly guided and inspired us. It’s a shame that none of those who we invited to today’s celebration were able to attend (as far as I know). I would like to pay tribute to members of our own families who have been with us through this. That’s our partners and children, of course, but it’s the survivors from the older generation who have mattered most directly. Our campaign was inspired by Nicci’s father (we wish it had not been) and it was a poignant moment when Nicci’s mother Pat stood with her to open our London Conference in October 2016.

In the first weeks of the campaign my mother June wrote a letter on our behalf, which she can no longer remember, but which has touched the hearts of many. A photograph, taken with a cameraman and reporter on the day we reached our First Hundred and Anglia TV came to interview her, remained a cherished possession long after she’d lost any concept who those people had been. She hadn’t much idea at the time but they were warm and friendly and interested in her. That was enough. Emotions survive long after memory, reason, verbal communication and all other abilities are gone.

That’s probably what the whole campaign has been about. Thank you for accepting this record of the moment that the English Hospital Trusts have reached now.

Julia Jones & Nicci Gerrard (11.6.2018)