Monday, 3 August 2015

Britain is a country where old men in hospital with dementia have a champion in Nicci Gerrard and John's Campaign

Nicci Gerrard is an accomplished novelist, her father, John, had been professionally, a doctor and then a businessman. She recalled that : 'He was very clever and also enormously competent; he could make things, fix things, solve problems, name trees and plants and insects and birds, grow vegetables, sing in tune, do cryptic crosswords, read maps, sail boats, tie knots, paint and draw, play chess. I always knew that with him I was in safe hands; nothing could go wrong. He was also modest, courteous, reticent, mild-mannered, mischievous, stubborn and sweet.'

John's life began to change about ten years ago when, in his mid seventies, he was diagnosed with dementia and began a steady decline which accelerated when he was either ill or upset. Nevertheless, he still led a happy life.

In 2013 John :

* went on holiday with Nicci's family  to Sweden, where "he had a sauna and swam in the lake and looked for mushrooms in the forest."

* went to Turkey with his son and other daughter and sat contentedly with his sketch pad among the wildflowers.

* at Christmas celebrated with Nicci's family, sang carols, ate goose, pulled crackers and teased the grandchildren and the dog.

* celebrated New Year's Eve with close friends.

Nicci recalled that she : 'sometimes thought of him as a great city whose lights were going out one by one, but slowly, so that you hardly noticed.'

In 2014 John :

* in February, at the age of 86, entered hospital with leg ulcers not responding to antibiotics and as Nicci recalled : 'went in strong, mobile, healthy, continent, reasonably articulate, cheerful' and able to lead a fulfilled daily life with his wife.

* found his his ulcers were slow to heal and because there was an outbreak of norovirus in the hospital, wasn’t allowed visitors, although all of his family managed to sneak in every so often, but only for a few minutes at a time.

* when his infection was healed, the hospital wanted him released to a 'rehabilitation ward' because he had lost so much of his mobility, but because there were no spare beds, his stay was prolonged further, until after five weeks, his family insisted he be discharged.

* left hospital, as Nicci recalled : 'skeletal, incontinent, immobile, incoherent, bewildered, quite lost. There was nothing he could do for himself and this man, so dependable and so competent, was now utterly vulnerable. He could not sit up. He could not turn over. He could not put one foot in front of the other. He could not lift a fork or a glass to his mouth. He could not string words into a sentence – indeed, he could barely make a word. He did not know where he was, who most of his friends were, sometimes perhaps he no longer knew who he himself was.'

* returned to his wife of 61 years, but had to have 24-hour care, was washed, had food and drink put into his mouth, lay in his bed day and night after night with Nicci recalling : 'He remained indelibly himself, sweet-natured and courteous, but he did not know himself. He was alive, but he did not have a life.'

* died in November.

In 2014, Nicci :
* reflected on John's decline :  'Perhaps this is what he would have come to in the end. But not so soon, not with such terrifying swiftness, a sudden and heart-wrenching obliteration. I am certain that if he had not lain in hospital for five weeks, with no one who loved him to take care of him, he would not have descended into such a state of incapacity.'

* in November, had her story

published in the Guardian, in which she made the following points :

- that : 'It is unimaginable now that children used to be left in hospital without their parents; that battle was won long ago.'

- couldn't see : 'that the needs of patients with dementia are any different. They are as vulnerable as a child, and can be as scared, distressed and disoriented as a child would be. The effect on their future mental health can be catastrophic.'

- started her campaign, 'because it’s the only way I can think of turning what was so sad into something hopeful. What happened to my father, what is happening to thousands of others, must not be allowed to continue.'

- wrote about her father for two reasons. First, because : 'it seemed horribly clear that if there hadn’t been restrictions on visiting, if we had been allowed to stay with him, feed him, walk with him, talk to him, read to him, keep him connected to the world, then he would not have so precipitously declined' and second, because she knew that what happened to her father 'has happened, is happening and will happen to thousands of others like him, who are vulnerable, fearful and bewildered.'

* announced 'John's Campaign', the brainchild of her co-campaigner, Julia Jones, whose 90-year-old mother has Alzheimer’s, which had a simple, achievable aim:


In 2015, Nicci :

* in January, appeared on the Andrew Marr Show : by which time she had been contacted by hundreds of people who shared their stories with her which she found 'inspiring and heartbreaking in equal measure'.

* maintained the campaign at :

* was instrumental in creating a list of hospitals which welcomed carers which included :

St Marys Hospital, Paddington
Imperial College Healthcare Trust
Charing Cross Hospital
Hammersmith Hospital
Royal Free NHS Foundation Trust
Bristol Royal Infirmary
Bristol University Hospitals
Bristol Eye Hopital
South Bristol University Hospital
St. Michaels Hospital
Southmead Hospital
Royal SUSSEX County
Brighton & Sussex University Hospitals
GLOUCESTER Hospitals NHS Foundation
IPSWICH Hospital, Suffolk
St. Margarets Community Hospital, EPPING, Essex
SOUTH ESSEX Partnership University NHS Foundation Trust
Trafford General Hospital, MANCHESTER
MANCHESTER University Hospitals NHS Foundation Trust
Essex, Basildon & Thurrock University Hospitals NHS Foundation Trust
Pinderfields General Hospital, WAKEFIELD
ANDOVER War Memorial Hospital
HAMPSHIRE Hospitals NHS Foundation Trust
BASINGSTOKE and N.Hampshire Hospitals
Royal HAMPSHIRE Hospital NHS Foundation Trust
WEST SUFFOLK Hospital, Bury St. Edmunds
West Suffolk NHS Foundation Trust
Queens Medical Centre, NOTTINGHAM
Nottingham University Hospitals NHS Trust
Royal Basildon Hospital, READING
Royal SHREWSBURY Hospital
Shrewsbury & Telford Hospitals NHS Trust
Princess Royal Hospital, Telford, SHROPSHIRE

* is a champion in need of as much help as possible to convince the remaining 400+ hospitals in England, 100 in Wales and 200+ in Scotland, which do not yet admit carers, to open their doors.

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