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John's Campaign - The Right for Carers to Stay With People with Dementia in Hospital

John’s Campaign, set up in November 2014, highlights the problem many relatives face when a loved one with dementia is in hospital and there are no facilities to allow them to stay. John, (Dr John Gerrard) was himself diagnosed with Alzheimer’s at the age of 86 but was still living an almost independent life; he developed leg ulcers and was hospitalised for five weeks. During that time his health deteriorated rapidly and by the end of his stay was left ‘skeletal, incontinent, immobile, incoherent’. 

John’s family felt the absence of loved ones around, people who knew him and could comfort him, contributed to his rapid downturn in health. They felt that although the nurses were kind and caring, they were not able to devote the time needed to a patient with his condition.

People with dementia often have other complications such as communication difficulties as well as poor eyesight, hearing and mental impairment. Hospitalisation can prove to be extremely distressing and confusing – increased by having strangers attending to their personal care. 

It is a fact that 25% of all hospital beds are being used by people with dementia and around 47% of those leave in a worse condition than when they came. This leaves relatives having to deal with the aftermath, when much of it could have been avoided by the hospitals providing a bed and allowing them to stay close by to assist staff with feeding, talking, touching and general ways of comforting that medical staff are unable to find time for. 

Dr James Munro, CEO of Patient Opinion writes: ‘Patients and carers have traditionally been seen as a burden on the NHS instead of a source of insight, energy and motivation for change…We’re supporting John’s Campaign because it is a perfect example of how one person’s story can speak for many – and with simple change, can help make a better health service for everyone.’ 

The Guardian newspaper is now getting behind the campaign by sponsoring a webpage on its Society section of their website. All UK hospitals that welcome carers will be added to a list that will run until November 2016. It is hoped that every acute hospital will sign up to the list and make the experience of patients with dementia and their carers less stressful. 

People can access John’s Campaign website for further information.

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