This feature is about the making of Secret NHS Diaries
Caroline Marsden writes:
It's an impossible programme to make, we were told. Dying people and their families don't want cameras around. They want to be left alone.
But we found that far from wanting to be left alone, people we met facing death felt isolated and ignored. The patients in Secret NHS Diaries asked repeatedly for help.
At the end of their lives, people want company, comfort and care. Knowing we were there was reassuring.
All three contributors wanted to film their experiences. They filmed their own intimate experiences with small video cameras in what would be the rawest moments of their lives. And all three said they did it so that other people would not have to suffer the same poor treatment.
Lynn and Harry Pinner
Lynn and Harry met at a single's night in Fulham. A box of photographs showed an endless stream of parties and cruises and fancy dress. Then Harry developed emphysema from exposure to asbestos at work. He didn't have long to live. His wish was to die at home with his wife.
King's College London put us in touch with Lynn after she filled out a questionnaire. Lynn was also caring for her mother who was dying of cancer on the other side of London. A former nurse, Lynn noticed the difference between her mother's ease of access to palliative care in Southwark compared to the services Harry was being offered in Fulham. Would services be in place to allow Harry to die a pain-free death at home? Lynn was apprehensive.
Video Diaries
We gave Lynn a small video camera and a box of tapes. She initially looked uncertain about how to use it but promised to give it a try. Soon we were picking up tapes full of well framed shots. She enjoyed using it and found it comforting. It became a sort of confidant, a journal, a way to meditate on the day's events, her husband's illness and her life as a full time carer.
Mostly she was glad someone was there to witness her growing frustration with the local health service.
The video diaries show her grandchildren dancing around the kitchen, friends visiting for tea. But most of it was hard to watch: Harry was in pain, having several heart attacks as Lynn made endless calls trying to get someone to come to the house to administer pain relief which was always significantly delayed. Watching her diaries after Harry's death, Lynn shook her head and said 'I spent the last days of my husband's life on the phone'.
Annie Walters
Riding her bike, aged 17, Annie was spotted by a modelling agency. For a few years she 'did catwalk' and was once offered a playboy centrefold: 'I turned it down because of what my father would say!' Annie was no stranger to attention. So it was all the more difficult to be left alone, aged 62, in a care home where many of the other residents were 20 years older and which, unlike nursing homes, are not equipped to provide the specialist care she needed. She was lonely and became lonelier still when Gloucestershire Social services began ignoring her calls.
Her motor neurone disease was progressing and in July 2010 the Gloucestershire local authority gave her a list of nursing homes that were better equipped to deal with her increasing needs. Knowing she doesn't have long to live, Annie chose one quickly. She wanted to be settled so she could die peacefully. But her social worker said there was a funding issue as that nursing home was too expensive and then all went quiet despite numerous phone calls, texts and emails.
Annie had outlived her prognosis and couldn't believe she was being ignored at the very end of her life. It wasn't until November that her social worker replied, stating too much work and a holiday as an excuse. It took half a year for Annie to be moved.
During that time her video diaries reveal a woman often in excruciating pain. In these moments Annie turned on the small camera at the side of her bed. She felt less alone. A palliative care nurse manages pain for the terminally ill. A few more visits from a specialist might have alleviated her pain.
Khaleel 'Ken' Rasheed
Both Harry and Annie's long term illnesses offered social services and local NHS a chance to prepare. Our third contributor, Ken, was an emergency hospital admission: a test of the system. He had a severe seizure and was rushed to hospital.
His daughter Tamina had called us much earlier in the year to recount a retrospective story of poor hospital care. We kept in touch over the months, Tamina calling with story ideas or to let us know about a news item we might find interesting for the programme.
Hospital
In October 2010 Tamina called again. Two days after his 80th birthday, her father Ken was admitted to East Surrey Hospital. Tamina was full of praise for the care he received on the stroke ward.
It was when Ken was moved to the Godstone general ward that Tamina asked us to come and see her. She was worried about the standard of nursing care: 'Some – not all – but some of the nursing care borders on callous.' We had previously been contacted by another family who had felt similarly about that exact same ward. We gave Tamina a camera that she could leave at her father's bedside. She was keen to keep watch on her father outside visiting hours. And rightly so: we show in the programme a nurse shouting at her father as he lay dying.
'I am sickened by what has happened to some parts of my profession'
Former nurse and patient's rights campaigner, the late Claire Rayner, declared herself 'sickened' by what has happened to some parts of the nursing profession. She used the words 'dreadful', 'neglectful', 'demeaning', 'painful' and 'cruel' to describe the treatment of some elderly patients whose families got in touch with her. And just this month a Health Ombudsman report revealed the harsh treatment suffered by a number elderly people admitted to hospital before they died.
By 2034, 23% of us will be 65 or over. The number of people over 85 will double. We hope this programme highlights what needs to change so that we can all be more certain of a dignified, pain-free death.
Find out more about Secret NHS Diaries
