John's Campaign is a campaign for extended visiting rights for family carers of patients with dementia in hospitals in the United Kingdom, founded on 30 November 2014 by the writers Nicci Gerrard and Julia Jones. Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being.
Alistair Burns, the national clinical director for dementia and mental health in older people with NHS England, said: "We would encourage hospital trusts, as part of the care they provide to individuals with dementia and their families, to consider facilitating an approach whereby the families and carers of people with dementia can support them fully while they are in hospital." [1]
In February 2014 Nicci Gerrard's father Dr John Gerrard, aged 86, spent five weeks in hospital for the treatment of leg ulcers. He suffered from Alzheimer's disease and his family's visiting was severely restricted because of a combination of normal "visiting hours" and an infectious outbreak. His condition deteriorated dramatically while he was in hospital; having previously been living well with Alzheimers he became "skeletal, incontinent, immobile, incoherent" and needed 24-hour care. He died in November 2014. His family believe that the lack of contact with familiar people and the lack of the individual attention they would have given him contributed significantly to his deterioration. [2] In November 2014 Nicci Gerrard wrote an article in The Observer after her father's death, [3] the following week's issue featured several supportive letters, [4] and the campaign developed thereafter.
An Early Day Motion was put before the UK Parliament in December 2014 with the title "John's Campaign and the right to stay with dementia patients in hospital." [5]
The campaign has received coverage including the April 2015 edition of the Alzheimer's Society's magazine Living with Dementia and BBC Radio 4's You and Yours consumer programme on 29 April 2015. [6]
In March 2016 it was announced that the campaign had been endorsed by the NHS and that trusts would be encouraged "to consider facilitating an approach whereby the families and carers of people with dementia can support them fully while they are in hospital". [1]
During the 2020 COVID-19 pandemic, John's Campaign became concerned about the restrictions on visits to residents of care homes in England. In July 2020 John's Campaign was the lead signatory of a letter to the Secretary of State describing "The hidden catastrophe that is taking place in care homes" and stating that "there has [...] been much suffering and a deterioration in mental and physical health among many of the residents because of the ban on all visitors". [7] In September 2020 the campaign launched legal action to challenge the restrictions. [8]
Julia Jones was awarded a British Empire Medal in the 2023 Birthday Honours; she was described as "Co-founder, John's Campaign", and the award was for "Services to People with Dementia". [9]
Dementia is a syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control. Aside from memory impairment and a disruption in thought patterns, the most common symptoms of dementia include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia ultimately has a significant effect on the individual, their caregivers, and their social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than might be caused by the normal aging process.
General practice is personal, family, and community-orientated comprehensive primary care that includes diagnosis, continues over time and is anticipatory as well as responsive.
Nicci French is the pseudonym of English husband-and-wife team Nicci Gerrard and Sean French, who write psychological thrillers together.
Cambridge University Hospitals NHS Foundation Trust is a British public sector healthcare provider located in Cambridge, England. It was established on 4 November 1992 as Addenbrooke's National Health Service Trust, and authorised as an NHS foundation trust under its current name on 1 July 2004.
NHS Lanarkshire is responsible for the health care of more than 652,000 people living within the council areas of North Lanarkshire and South Lanarkshire in Scotland, making it the third largest health board in the country after NHS Greater Glasgow & Clyde and NHS Lothian. NHS Lanarkshire employs approximately 12,000 staff. The board is based at Kirklands, Fallside Road in Bothwell, South Lanarkshire.
NHS Borders is one of the fourteen health boards within NHS Scotland. It provides healthcare services for the Scottish Borders, the south east region of Scotland. NHS Borders is headquartered in Melrose.
NHS Highland is one of the fourteen regions of NHS Scotland. Geographically, it is the largest Health Board, covering an area of 32,500 km2 (12,500 sq mi) from Kintyre in the south-west to Caithness in the north-east, serving a population of 320,000 people. In 2016–17 it had an operating budget of £780 million. It provides prehospital care, primary and secondary care services.
As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
The National Health Service (NHS) is the umbrella term for the publicly funded healthcare systems of the United Kingdom, comprising the NHS in England, NHS Scotland and NHS Wales. Health and Social Care in Northern Ireland was created separately and is often locally referred to as "the NHS". The original three systems were established in 1948 as part of major social reforms following the Second World War. The founding principles were that services should be comprehensive, universal and free at the point of delivery—a health service based on clinical need, not ability to pay. Each service provides a comprehensive range of health services, provided without charge for residents of the United Kingdom apart from dental treatment and optical care. In England, NHS patients have to pay prescription charges; some, such as those aged over 60, or those on certain state benefits, are exempt.
South London and Maudsley NHS Foundation Trust, also known as SLaM, is an NHS foundation trust based in London, England, which specialises in mental health. It comprises four psychiatric hospitals, the Ladywell Unit based at University Hospital Lewisham, and over 100 community sites and 300 clinical teams. SLaM forms part of the institutions that make up King's Health Partners, an academic health science centre.
Hinchingbrooke Hospital is a small district general hospital in Hinchingbrooke near Huntingdon, Cambridgeshire. Opened in 1983, it serves the Huntingdonshire area, and has a range of specialities as well as an emergency department and a maternity unit. The hospital is managed by the North West Anglia NHS Foundation Trust.
Care UK is a provider of residential care for older people. They operate more than 150 homes offering residential care, dementia care, and nursing care. The company formerly also operated a wider range of healthcare services until 2019 when these were split off to Practice Plus Group, private-equity firm Bridgepoint Group retaining ultimate control over both companies.
Blackberry Hill Hospital is an NHS psychiatric hospital in Fishponds, Bristol, England, specialising in forensic mental health services, operated by the Avon and Wiltshire Mental Health Partnership NHS Trust. The hospital also offers drug and alcohol rehabilitation inpatient services, and is the base for a number of community mental health teams.
Julia Jones, formerly also known as Julia Thorogood, is an English writer, editor, book publisher and patient advocate.
Norfolk and Suffolk NHS Foundation Trust (NSFT) is a large mental health trust and an NHS Foundation Trust. It runs services in Norfolk and Suffolk, England, chiefly at Hellesdon Hospital, Norvic and Julian Hospital in Norwich, Northgate in Great Yarmouth, and Carlton Court in Lowestoft
Southern Health NHS Foundation Trust is an NHS foundation trust which provides community health, mental health and learning disability services across Hampshire. It is one of the largest providers of such services in England.
June Andrews,, is a Scottish nurse who is an expert in dementia studies and aged care. She was the professor of dementia studies at the Dementia Services Development Centre at the University of Stirling. She is now Professor Emeritus. She has written many publications on the topics of dementia, care homes and geriatric care.
Healthcare in Dorset was primarily the responsibility of Dorset Clinical Commissioning Group until July 2022. Dorset County Council is leading in the development of an electronic health record, to be called the Dorset Care Record, provided by Orion Health. It is intended to enable all health and social care providers to share records.
Callington Road Hospital is a psychiatric hospital in Bristol, England. Opened in 2006, it primarily replaced Barrow Hospital, providing psychiatric inpatient and community services for Bristol and the surrounding region. It is run by the Avon and Wiltshire Mental Health Partnership NHS Trust.
Catherine Jane CalderwoodFRCOG FRCPE is a Scottish consultant obstetrician and gynaecologist, who has served as the National Clinical Director for Sustainable Delivery at the Golden Jubilee University National Hospital since 2021. She previously served as the Chief Medical Officer for Scotland from 2015 to 2020, having advised the Scottish Government's initial response to the COVID-19 pandemic in Scotland.
The hospitals scrapping visiting hours to allow families in whenever they want. How does it work in practice and what does it mean for patient care?