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"It could be any day now": Why do you learn



He can't walk, so we unlock the door and come to him immediately. Low oxygen concentrator buzz greets us.

The tubes go through Naylor's ears and across his face and curl his nostrils. Framed family photos are placed on the shelf on his side, each of which gets intimate moments from his life.

We are also facing an intimate moment with him, but for another reason.

He's dying.

The Nottinghamshire hospice team caring for the disease is three hours at night. Naylor is the third patient they visit.

He has been fighting diabetes and has had several heart attacks. His breathing is severe and pronounced. He exhales before opening his mouth slowly to say, "I'm stuck on this bed. I've been over for a year. I can't get out. I can't go to the toilet. I just slept here.

"I'm close to the end of my life. It could be any day."

Outside access to hostel night services, as it is, is unusual because patients are at a very vulnerable stage of their lives.

But the hospice team gave CNN access because they want to show how palliative care is provided in the UK and make us think more about what death we want for ourselves and our loved ones. The topic is close to my heart because the team took care of my father before he died this year.

"We all think we are immortal, so we want to invest more money to save lives; there is no money left for palliative care because we do not accept that we will die," said Hospice UK CEO Trace Blealey, a hospital roof organization.

Peter Naylor in his bed in Bilborough, Nottingham.

"It Means All"

Hospices offers specialist care and support to people with terminal and disease-limiting life. They work with the UK National Health Service to provide care to people who are often in the life stages, usually those who no longer want to be hospitalized and want to get home care.

According to the charity Hospice UK, it costs £ 1.4 billion ($ 1.8 billion) a year. They are partly funded by the National Health Service, but rely heavily on fundraising and donations.

In our time together with the night hospice team we met several people who received non-life care. Given the sensitivity of their personal circumstances, some patients did not want to be interviewed or photographed.

Naylor was ready to talk to us. After leaving the nursing home, a 70-year-old man chose to receive end-of-life treatment in his bungalow.

But his condition gradually deteriorated. At one time he fell, trying to go to the toilet. He was alone and could not move. Three hours before someone came to help him.

As a result, the care she received has increased and she not only receives visits to the night hospital team, but now she has a full-time caregiver who lives with her during the day. Additional support allows him to rest and sleep better.

"That means everything," he said. "It's a night when I'm afraid when I'm here, but I know when they come and can call them if I really need them."

The modern hospice movement began in the United Kingdom in the 1960s, says Allan Kellehears, a professor specializing in Bradford University Lifelong Learning. It spread to the United States in the 1970s.

He said that life expectancy increased and how people die changed. More people die in the long term chronic diseases such as cardiovascular diseases and cancer, not infectious diseases.

Hospices took care of the worries people with these long-term illnesses. There are now over 200 hospitals in the UK. Since the first program in 1974, the number of US hospital programs has increased; from 2013 there were 5,800.
However, in many low-income and middle-income countries, non-life care is poor, according to The Lancet Global Health magazine. Tens of millions of people in need of palliative care have very limited access even to oral morphine for pain relief.

Naylor is convinced that he wants to die in his own home – something that happens to less than one-fourth of the English population, according to data from the UK's National Bureau of Statistics.

He is not alone. Before meeting with a night hospital shift, we visit Harry and Seren Perchin's house in Nuthall, Nottingham, just before midnight.

It is clear that this visit is a daily routine for both the hospital team and the patient.

We are pleased with Harry's gaze in the hallway. A 96-year-old was an engineer during World War II. After we are greeted quickly, he mixes with his wife in the lounge.

Since 1973 he has been married to Seren. They met when Harry was hospitalized for pneumonia; Serena was his nurse.

"I would have said it was the best girl I could ever marry," he says, sitting at her.

Harry and Serena Perkin in their house in Nuthall, Nottingham.

Harry, who has bowel cancer and heart problems, uses day care provided by the hospital service once a week when he sees friends and accesses day care. He is also attended by a night support team at around 4pm. every night.

"I think it was a nuclear game that took me away, but it's finished. So it's my heart or cancer that takes me."

Despite his health, Harry is more concerned about Serena's well-being than he is.

"We hope to come to them every night. They are nice people. They take me up to sleep, change me," he says. "But they're also talking to my wife. Keep your business very important."

Serena is also grateful. "I didn't understand what weight I had on my shoulders until they came. It really gave me my freedom back," she says.

Care helps Harry continue living with Seren in her home. It allows him to enjoy the quality of life he wants.

When we are going to leave, Harry is going to sleep. He firmly shook my hand and mumbles the proverb from former British Prime Minister Winston Cercil: "Never give up. Never, never, never."

Deborah Royston, a community-based community support worker, with Harry Perchin.

Who provides care?

Nottingham hospice CNN spent time with charity.

Although one third of its income comes from the UK National Health Service, the rest comes from fundraising; The hospital needs to maintain an average of £ 7,000 (about $ 9,000) per day to provide the services it provides, according to Jo Polkey, Nottinghamshire Hospice Care Manager. Many hospitals across the country face a similar funding gap.

"Someone who needs palliative care is left without treatment options. Trying to make someone as comfortable as possible. We want to add him to life instead of thinking about it as an end," she says.

Its main service is Hospice at Home, through which more than 60 nurses and health care assistants provide home care for people with terminal and life-limiting diseases. They also provide 24-hour support teams, day care units and refugee care and support.

"We often deal with people very much at the end of life and in the last days, weeks and hours of life," Polkey said. "I think our average length of stay [of a patient] is about 26 days. They stay in the services for a very long time before they die. "

What do you need to become a member of a hospice team? One of the first things she says is that they are "flexible."

Night shift is undoubtedly the most important one.

Deborah Royston and Sonia Lees during the night shift.

"People die in your shift"

Two day-care staff Deborah Royston and Sonia Lees describe the high and low levels of their work between visits to patients.

Despite the late hours, the work requires a lot of driving, and many patients live in Nottinghamshire, a county close to central England, home to more than 800,000 people. Changes usually start at. and ends before 7:00.

Royston says it is particularly difficult for her to build a close relationship with patients.

"It's really sad … to cope with death every day. Sometimes people die in your shifts, but it's good that you can be both for them and for family members in this time of sorrow."

Another visit we made was at Wollaton's home, Linda Wagner, whose husband Bob relies on the support of the night hospital. He has a progressive supranuclear stroke, a rare disease that can cause problems with balance, movement, vision, speech and swallowing.

"I know some people don't believe in angels [overnight carers] – as angels, "she said." I didn't know that the support was in the past. If I fight, I know there are other people who go through the same thing. It's just a wonderful thing. "

Linda Wagner, well, with Hospice at home nursing Karen.

Despite the difficulties in the Royston field, she described this work as a "passion". She has been helping to provide night support for 12 years and reveals the opportunity to build relationships with patients and their families, although this may be the heart.

"I just love it. It makes my heart feel good.

Serious palliative care crisis?

Death is not always appropriate, but the use of Polkey seems to affect the chord: "People die to come to our services," she says.

Over the last three years, hospitals have helped over 200,000 people across the country every year, says Hospice UK Bleakley. However, his organization's research in 2017 revealed that 118,000 people could benefit from the hospice every year, and palliative care does not receive it because they live in an economically disadvantaged area, live alone or have some sort of terminal condition, among other things.

Bleakley thinks there is a crisis in palliative care that will only get worse.

"After the war, we experienced a huge boom in children, and now these people are starting to die, so we will now increase the mortality rate. We all live longer, and we are all bad for longer at the end of life."

The aging of the UK population will only increase pressure, says Bleakley. According to the National Bureau of Statistics, 12 million UK residents were aged 65 and over in 2017: around 18.2% of the population.
In a survey conducted earlier this year, over 8 out of 10 UK adults said that the role of hospitals would be more important in the next decade.

Bleakley was also worried about what the UK's planned withdrawal from the European Union could do.

"Anything that affects consumer confidence, from companies with extra money to financially support hospitality services for people who choose to run a marathon to raise money – Brexit affects many things," she said.

"And on the labor side, we'll see that the National Health Service will start more members."

Inclusion issues

Another challenge for practitioners is inclusion.

Kellehear, from Bradford University, says many ethnic minority groups in the UK cannot access palliative care.

Nottinghamshire Hospice Polkey noted: "We care for many middle-class people. However, we have sat in one of the most diverse cities in the country. We desperately want to come to communities. Work on."

Hospice UK runs a campaign called Open Up Hospice Care to try to solve this problem.

"There are people in the LGBT community … minority groups, people in prison – many of these people feel that many traditional services don't work for them," said Hospice UK.

She also says that funding will be an important issue for hospitals.

The National Health Service Long-Term Plan, which outlines the UK's key health plans and priorities for the next 10 years, includes more attention to public care and training for palliative care, but Bleakley says there is no indication that more funds will be allocated to palliative care.

"It costs 1.4 billion (pounds) a year to run hospitals, and the NHS puts 350 million, they do not introduce the real cost of care or anything else." she said.

However, she is not only responsible for the government. She says that society as a whole should be more active when it comes to non-life care.

Kellehears agrees. He supports the idea of ​​compassionate communities and cities, a more holistic approach to palliative care, which includes both the poor and the dead.

It is based on the idea that care should not be limited to doctors, nurses and families of dying people around. Instead, the general public should be involved in supporting people with final illnesses.

"We should not wait until a disaster is happening. It's about going to school, going to work and saying," It looks like everyone's business. What are you doing to do your bit? "Not enough is happening in the UK."

For example, he says schools have to prepare children for what to do if a colleague loses his loved one.

"The people we forget in palliative care are poor people who often have similar social consequences as people with restrictive diseases: depression, anxiety, loneliness, social rejection and even suicide," he added.

"These people best help when communities come together to support people who are at risk of these things."

Bleakley thinks we have to face the reality of death more often.

"Good death is the legacy of the people we leave."


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