NHS visitor bans mean teens with cancer only go to appointments where doctors tell them their illness is terminal, activists warn.
The Teenage Cancer Trust and CLIC Sargent wrote a letter to UK health ministers asking them to promise that young cancer patients will not have to face the devastating news or go through grueling treatment alone.
In the UK, seven young people between the ages of 13 and 24 are diagnosed with cancer every day, which equates to around 2,500 a year.
The charities, which are launching their “Hand2Hold” campaign, have said they want to “eliminate the disparity” in support between different parts of the NHS.
While NHS England insists that visitors and carers are allowed to attend appointments with young cancer patients, hospital visits are generally not allowed.
Decisions are ultimately made by individual hospitals: some require visitors to be pre-approved, while others reportedly did not admit them at all during the crisis.
In the letter to Health Minister Jo Churchill, the charities praised the “diligent work of the NHS and its staff to ensure that vital care continues.”
Some worried parents had to sit in hospital parking lots waiting for their children to come out of appointments, said CLIC Sargent, a pediatric cancer charity.
And a survey by the charity found that 90 percent of young sick people had undergone the treatment themselves, while a 22-year-old from Wales said she should have stayed in Manchester for a stem cell transplant but would not be able. to take the family with them. . long.
Kathryn was shocked when a scan found a 12cm x 14cm mass in her chest and doctors diagnosed her with Hodgkin’s lymphoma when she was only 20 years old. Now 22, she will have to travel from Wales to Manchester on her own for treatment
Sophie, 24, said her family would not be able to stay with her during a long hospital stay in Manchester – she lives in Wales – after her leukemia returned for the second time last year.
The letter from the charities stated: ” [We] I am extremely grateful that in many cases staff and trusts went out of their way to help alleviate this predicament for young cancer patients and to ensure that there was some kind of guidance, albeit virtual.
“We want these good practice examples to be encouraged across the UK.
“We ask you, as ministers of health in every country, to force young cancer patients not to hear the news that they have cancer or to go through their treatment alone.”
In a recent Facebook survey of 100 young people supported by CLIC Sargent, nine out of ten said they were only treated in the hospital during the pandemic.
The policy of the NHS requires that visits be “allowed in a very careful and safe way for Covid”.
Visiting hospitalized patients may be permitted, but limited to a person who must wear personal protective equipment and maintain social distancing.
And people can be accompanied to outpatient appointments by anyone who is “important to them,” but typically only one person and social distancing must be respected. The rules are open to interpretation by individual clinics and hospitals.
Hodgkin’s lymphoma patient Kathryn Rodwell, 22, said she would have to travel from her North Wales home to Manchester for a stem cell transplant.
She said it will be “extremely difficult” for her to be away from home for a week and that she would miss the opportunity to take her family with her.
The death toll of cancer surgery discarded
The devastating toll of the pandemic on cancer patients was exposed this week.
Tens of thousands have lost potentially life-saving treatments, official figures show.
Surgery to remove tumors fell by a third during the first wave of coronavirus. According to Public Health England (PHE), 21,700 fewer patients underwent cancer surgery between April and August compared to the same period in 2019.
The number of patients diagnosed with cancer from April to September last year was 35,592, a decrease of a quarter from the 2019 level.
And in the eight months from April to November, 35,488 fewer patients started cancer treatments, including chemotherapy and radiotherapy, 17 percent fewer than in 2019.
The devastating numbers surfaced when the head of the NHS said further delays in cancer surgery in recent weeks have been a major cause for concern.
In the first two weeks of January, around 800 cancer surgeries were canceled as hospitals again postponed thousands of non-covid treatments.
Sir Simon Stevens told lawmakers last week that health chiefs were “more concerned” about stopping cancer surgery.
Miss Rodwell of Gwernaffield said, “From friends who are going through similar things, I know it’s very important to have a family there and I don’t want it at all.”
Helen Gravestock, Associate Policy Director CLIC Sargent, said: “Young people told us that one of the worst things about cancer during the pandemic is that you have to go to the hospital alone, sometimes to hear bad news.
“Our social workers spoke on the phone with worried parents as they wait in the hospital parking lot for their son or daughter to come out.
“You don’t stop worrying about your son just because he’s grown up.”
Sophie, 24, was first diagnosed with leukemia in 2015 and relapsed for the second time in February 2020, just before the first block.
She was told she needed CAR-T cell therapy and treatment at Christie in Manchester, 70 miles from home.
CAR-T is a highly specialized cancer treatment available only in some hospitals and requires doctors to remove white blood cells from the body, enhance them to recognize and destroy cancer cells, and then reinsert them.
Sophie, who did not give her surname, said: “We had to go to Manchester, so my mother accompanied me, we came to the door and I had my suitcase because I knew I would be admitted. [for] about five weeks for me to have the CAR-T.
“My mother cried, I cried and she had to leave me at the door and leave.
‘I struggled with this suitcase alone … my mother was terrified of leaving me because she probably thought, “I can’t be there to comfort her” and also, “if something goes wrong, will she get out of the hospital again?”
Cancer colleague Daniela Alves recalled that she had to undergo chemotherapy without a visit.
The 21-year-old from North London said: “Spending my first week alone was pretty scary.
“You don’t know what symptoms you will feel first, you don’t know how you will react to pain. It was very disheartening. ‘
dr. Louise Soanes, a senior nurse with the Teenage Cancer Trust, said that in some areas “it’s allowed to hold that important hand, while in others it’s not allowed.”
He said: “We want to eliminate inequality so that all young people, where it is safe and possible, have that crucial loved one with them and a hand to hold on to, especially during some of the most difficult times in their lives.”
Charities are asking the public to support their campaign.
A spokesperson for the NHS said, “The NHS is absolutely clear that young cancer patients should be able to have friends and family to support them at dating, so national guidelines are explicit that this should be provided in a way. safe from Covid.
“It is important for families to know that cancer treatment continues across the country so that young people can get the care they need, with the right support.”
A study published in the Lancet in October estimated that three million people in the UK missed cancer screening during the Covid pandemic.
The National Institute of Health and Care Excellence changed its guidelines to tell doctors to warn cancer patients that visiting hospitals during the first wave can be more dangerous than delaying treatment due to the risk of infection.
It took months for the NHS to get back on its feet, during which time the number of people waiting for routine surgery soared to a record 4.46 million.