Let’s imagine a screening test that can detect cancer X and stage it. Now, let’s suppose that we run this test on every living being in community Y. In this story, we discover that 50 %–one out of every two people–has cancer X. Cancer X has dire effects on... Read more
One of the many challenges of parenting is getting your baby to sleep through the night.
This can be even more stressful for parents if they think about the small — but nevertheless frightening — risk of sleep-related deaths among infants.
A new study suggests that hospitals and pediatricians could do more to ease parents’ fears by helping them give their baby the safest and most sound sleep environment possible.
Unsafe sleeping environments
Previous research has relied on parents to report on how they put their baby to sleep.
Are they on their back or stomach?
Are there other objects in the crib?
Are they swaddled in blankets?
In the new study, published today in the medical journal Pediatrics, researchers made video recordings of 160 infants starting one hour before bedtime and continuing throughout the night.
More than two-thirds of the infants were observed three times — at 1, 3, and 6 months of age.
Even though parents were aware they were being recorded, most of them placed their babies in sleep environments that increased the risk of sleep-related infant death.
“Nearly all of them had some risk factors. For example, at one month [of age], 91 percent had loose or non-approved items on their sleep surface. At three months [of age], 87 percent had something on their sleep surface,” study author Dr. Ian M. Paul, M.Sc., a professor of pediatrics and public health sciences at Penn State College of Medicine, told Healthline.
The most common items were loose bedding, crib bumpers — which are banned in some cities — pillows, stuffed animals, and sleep positioners.
Although many babies started the night off in a safe sleeping space, it didn’t always last.
“If parents move their babies in the middle of the night, they usually move them to a less safe location,” said Paul.
Over the course of the entire night, 36 percent of 1-month-olds were placed in a position other than on their back. And 28 percent shared a sleep surface with a parent at some point during the night.
For 3-month-olds, 35 percent were placed on their side or stomach, and 22 percent shared a sleep surface with a parent at some point.
Guidelines for safe sleep
Doctors and professional medical organizations have long provided guidance to parents on the best way to put their baby to bed.
In 1994 the Back to Sleep campaign, now known as Safe to Sleep, was rolled out. Its goal was to educate parents about sudden infant death syndrome (SIDS), and teach them ways to reduce their baby’s risk.
SIDS is the leading cause of death among infants between 1 and 12 months of age. In 2010, more than 2,000 babies died of SIDS, according to the National Institutes of Health (NIH).
The exact cause of SIDS is not known. Research, though, has identified several risk factors for SIDS, including babies sleeping on their stomachs, on soft surfaces, under loose bedding, or in a bed with parents, other children, or pets.
Early on, parents were urged to place infants under 12 months of age to sleep on their side or back. This was later changed to placing babies only on their back — for every sleep. Later guidelines also targeted other risk factors for SIDS.
Although the guidelines have changed over the years as more research was done, the best ways to protect your baby are easy to remember.
“Boring is best. Please put your baby on their back to sleep, in their own sleep space, without anything around them. They will know that you love them for that,” Dr. Elizabeth Murray, a pediatrician at University of Rochester Medical Center’s Golisano Children’s Hospital, who was not associated with the study, told Healthline.
The American Academy of Pediatrics (AAP) guidelines also recommend against parents having their baby sleep in the same bed with them — known as co-sleeping.
“Whether it’s just a simple sheet from the adult bed or very soft bedding, if the baby rolls slightly, they can easily suffocate,” said Murray.
This includes avoiding devices designed to make bed-sharing “safe.” But the AAP does encourage parents to keep babies in the same room during sleep — just in their own sleep space.
The steps for lowering the risk of SIDS can also prevent infant deaths by suffocation or strangulation — what’s known as unsafe sleep deaths. These are fewer in number than SIDS deaths, but they are entirely preventable.
“SIDS deaths are deaths in which no explanation can be found after a thorough scene investigation and autopsy,” said Murray. “But unsafe sleep deaths are different from that. And I think a lot of misperception among the public exists.”
Modeling safe sleep
Much effort has been spent in educating parents and caregivers over the years about the importance of safe sleep.
For the most impact, though, hospitals need to be on board with the guidelines as well.
“It could be we don’t model good behaviors,” said Paul. “Most pediatricians will tell you that when they walk into a room in the hospital after the baby’s just been born, that there’s not always safe sleep environments modeled or discussed initially.”
The University of Rochester Medical Center is trying to change that. Between 2007 and 2013, the county where the hospital is located has had an average of 10 infants die each year due to unsafe sleeping conditions.
“We really wanted to make sure we got parents to understand that unsafe sleep situations and unsafe sleep-related deaths are 100 percent preventable,” said Murray.
A big part of the hospital’s efforts includes modeling safe sleep environments for infants from the start, for both newborns and infants that are admitted later to the hospital.
“We can talk to families a lot about [safe sleep],” said Murray, “but if you give them that additional step of modeling it and have them practice it, and have them watch a video and give them written material, it hits many different parts of your brain.”
All newborn families are given a sleepsack — a wearable blanket with holes for the baby’s arms and head. This keeps infants warm without the danger of it covering their face. All babies in the hospital are also put in a sleepsack while they sleep.
Good modeling can also inform other caregivers about the importance of safe sleep for infants — including grandparents, who may have done things differently in their day.
But practicing safe sleep repeatedly can help parents make the best choices even when they are up night after night trying to soothe a restless baby.
“If you can do the best that you can to get yourself in a routine of a safe sleep environment at all times, even if you are super exhausted, you are much more likely to do exactly what’s right for the baby,” said Murray.
Most of us remember that week before school started when our parent sent us to bed — and woke us — early to get us back into “the routine.”
Is that really the best way to prepare your children for a new school year?
What other things can parents do to get back into healthy routines as summer fades into fall?
We’ve rounded up a few tips from various lifestyle experts.
The sleep factor
“Unfortunately, kids just don’t buy the argument, ‘Sleep now, because you’ll be tired later!’” Dr. Eileen Kennedy-Moore, a psychologist from New Jersey, and author of “Raising Emotionally & Socially Healthy Kids,” told Healthline.
“Convincing them to go to bed earlier will be a hard sell, unless they actually are tired,” she said. “Getting them up a bit earlier every day starting a week or two before school starts can help kids shift their body clocks and avoid major jet lag once school begins.”
“We let a lot of things slide over the summer … an afternoon Popsicle and then an ice cream cone after dinner,” said Maya Henry, a health coach from Pittsburgh.
Get back into a fall routine by clearly setting health goals for your family and setting up a meal planning system.
“Explain to the whole family why food rules are changing and any new rules you will be introducing,” she said. “Emphasize the benefits and let your kids choose healthy meals from a list of ‘agreed upon meals.’”
One thing to carry over from the summer: All the great produce. Let kids know it continues into fall with a few new choices.
Felicia D. Stoler, a registered dietitian from New Jersey, recommends adding apples, pears, and squashes to the food rotation.
“Don’t forget to buy the dried Indian corn,” she added.
When put into brown paper lunch bags, it can be popped in the microwave for a healthy snack.
“One of the top things to do is make sure kids are fitting in a healthy breakfast, which has shown to improve athletic and academic performance,” Sharon Palmer, the California-based author of “Plant-Powered for Life,” told Healthline. The meal should include whole grains, a healthy protein, and a serving of fruits or vegetables for an ideal balance.
Preparing healthy after-school snacks is also key to keep children eating healthy. Palmer recommends stocking a fruit basket on the kitchen table, as well as keeping sliced veggies and hummus or nut butter ready to go in the fridge.
It may also be a good time to get in the habit of Meatless Mondays, too.
“Try out a veggie taco bar, veggie lasagna, or pasta tossed with kale and chickpeas,” she added.
Jessica Cording, a dietitian from New York, advises getting the kids involved in meal planning, whether it’s packing lunch or food shopping.
One thing to take charge of is removing sugar from the house.
“Kids will get enough of it at school and at friends’ homes,” she added.
Palmer said the simple act of school shopping can help kids get excited about going back to a routine.
“Being able to choose certain items gives kids a sense of control and happy anticipation,” she added.
Parents need to get back into the swing of things, which can then help them fall back into healthy habits.
Laura Cipullo, a nutritionist from New York, suggests that parents try to meditate for 5 to 10 minutes in the morning.
“Try to meditate at the same time every day in the same location for the best results,” she said.
You may need to wake before the kids do to fit that in. To do that, place your phone far from the bed so you can’t hit snooze.
“Treat this season as a great time to work with kids on their oral health habits by teaching the 2 by 2 by 2 Rule,” said Dr. Renee Townsend, a dentist from Texas.
Do that during a set time before school and before bedtime.
The rule is simple: Brush and floss teeth for two minutes twice daily, and visit the dentist twice each year. Kids can even repeat the rule by holding up two fingers.
“Brushing together is a great way to model good oral health habits for kids, as well as monitor and assist kids so that they clean their teeth properly,” she added.
“Back to school can be a great time to start healthy habits,” Dr. Larry Burchett, an emergency physician from California, told Healthline.
He said that you need a trigger to set up a habit. For example, while packing lunches (a trigger) give children the option of which fruits and veggies to include in their lunch (a healthy behavior).
“Then reward them with verbal praise — until they do this on their own, and it’s part of the routine,” he said.
For most people, there’s absolutely no reason to avoid gluten, according to Dr. Joseph Murray, a prominent gastroenterologist, and author of the book “Mayo Clinic Going Gluten Free.”
But why has Murray written a book teaching people how to avoid gluten — a protein found in wheat, barley, and rye — if it’s safe and nutritious?
“A number of patients who go gluten-free even though they don’t have celiac disease do better,” Murray said, “and when they go back to eating wheat they feel worse again.”
About 1 percent of the U.S. population suffers from celiac disease. For these people, eating gluten triggers an autoimmune response that damages the intestines and keeps nutrients from being absorbed properly.
People with untreated celiac disease can suffer from dramatic weight loss, vitamin deficiencies, chronic pain, diarrhea, fatigue, and, if they’re women, repeated miscarriages.
While celiac affects just 1 in 133 Americans, more than 10 times as many people shun bread, baked goods, crackers, and soy sauce because of the gluten they contain. A quarter of all Americans said in a recent food industry survey that they believed gluten was not nutritious.
In a 2014 Consumer Reports survey, 63 percent of participants said they felt following a gluten-free diet would improve physical or mental health.
And in a 2015 Gallup Poll, 21 percent of Americans said they try to include gluten-free foods in their diet.
In the gap between people for whom gluten prompts the body to turn against itself, and those who mistakenly think the protein is bad for them, sits a third group of people — estimates range from 0.6 to 6 percent of Americans — who suffer from non-celiac gluten sensitivity (NCGS).
These people have digestive, mood, and energy complaints that they believe are eliminated with a gluten-free diet. Blood tests show they do not have celiac disease antibodies. Intestinal biopsies show none of the damage that people with celiac disease exhibit. These people also don’t have a conventional food allergy to wheat.
In fact, modern medicine can’t find anything wrong with them. Yet, in response to an online call for NCGS sufferers, Healthline received reports of symptoms that emphasized bloating, diarrhea, and fatigue, but also included nausea, migraines, brain fog, irritability, mood swings, depression, achiness, joint inflammation, enlarged red blood cells, vertigo, and acne.
A study released in June 2016 did conclude that perhaps there is a blood test that detected a genuine medical condition for people who complain of these symptoms.
But that study involved only 80 people total, so the question remains.
Is NCGS a real condition?
Stalking a mysterious illness
Doctors and researchers have been looking for answers to that question.
With no tests to identify NCGS, it hasn’t been easy. Experts point to two influential studies.
The first, published in February, started with 118 Italians who said they had NCGS. The researchers eliminated half the volunteers for not meeting the condition criteria. They then tracked 59 participants through a placebo phase, when each received a small amount of rice protein every day, and a study phase, when each received gluten. Three participants exhibited more symptoms during the gluten phase.
Some hailed the study as proving that gluten sensitivity is real. But Dr. Stefano Guandalini, the founder and medical director at the University of Chicago Celiac Disease Center, who was not involved in the research, offered a different interpretation of the findings.
“There is a small, tiny, tiny, tiny number of patients who may be sensitive to gluten without having celiac disease,” he said.
Most celiac specialists take a similar view. They don’t dismiss gluten sensitivity outright — perhaps in part because dermatitis herpetiformis was initially not thought to be gluten related, but is now recognized as a manifestation of celiac disease.
Like Guandalini, most are skeptical that NCGS is anywhere near as widespread as people believe it is.
“I think [these patients] exist. They’re probably not that common, but they exist,” Murray said about people with NCGS, or what he calls “celiac-light.”
But if only a tiny number of people who report NCGS have a gluten-related condition, what’s going on with everybody else who complains of digestive woes?
They probably fall into several groups. Some may be in the early stages of celiac disease and the disease hasn’t yet produced any of its telltale signs, Guandalini said. Others are likely allergic to wheat.
Many may be sensitive to fermentable oligo-, di-, and monosaccharides and polyols (FODMAPs), which are certain types of carbohydrates including wheat, lentils, and mushrooms that can draw water into the intestine and potentially ferment, causing digestive problems for some people.
This is what the second influential study on gluten sensitivity found. The 2013 study suggested that intolerance to the carbohydrates in wheat might account for what many believe is a bad reaction to gluten.
The Australian research team behind the study had previously shown that people who self-identified as having NCGS did better on a gluten-free diet even when they didn’t know if they were eating gluten or not. When they launched a second study, they expected to confirm these results.
But they didn’t. This time around, the researchers first reduced FODMAPs in the participants’ diets. Then they reintroduced gluten or a placebo. There was absolutely no difference in participants’ reactions.
The Australian team concluded that most people who thought they couldn’t tolerate gluten were in reality sensitive to FODMAPs. Once they had cut consumption of these carbohydrates below a certain threshold, gluten posed no problem for them.
Food also has a strong placebo effect. Some people may feel better on a gluten-free diet simply because they expect to. There’s a corresponding “nocebo” effect that leads people to feel worse again when they are exposed to the thing they believe is bad for them.
Many people who give up gluten wind up eating less initially, Murray said. And for people with digestive problems, eating less can make them feel better.
“It’s just not a very sustainable solution,” he added.
Eliminating all of these alternate explanations, only a tiny number of people remain whose gastrointestinal problems are unexplained.
Celiac community welcomes NCGS diagnosis — mostly
For such a small group, an awful lot of ink has been spilled over those with NCGS.
The criteria for NCGS that doctors have developed disguise the fact in an elaborate flowchart, but “currently it’s a patient diagnosis,” said Dr. Peter Green, director of the Celiac Disease Center at Columbia University.
Celiac support groups seem to share the view of gluten sensitivity as a real but inflated diagnosis.
“There were always people who just did better removing gluten from their diet, but we didn’t know why,” said Mary Schluckebier, Executive Director of the Celiac Support Association, a national group based in Nebraska. “It’s probably a family of diseases, and we don’t have good names for any of it yet.”
But Schluckebier also described something else that may be driving the rise of NCGS.
“A patient goes to the doctor, and they want a diagnosis. ‘Don’t tell me I don’t have this — give me a name for it,’” she said. “So doctors came up for a name for it. I think it was a way to appease impatient patients. I don’t know how to say that nicely.”
Alice Bast, the president and chief executive officer of Beyond Celiac, formerly the National Foundation for Celiac Awareness, based in Ambler, Pennsylvania, found emotions are a common cause with people who have NCGS.
“They want research, they want to know what’s happening to their bodies. You want to feel better. You want to live life to the fullest. You don’t want to live life in fear of food,” Bast said.
People with celiac disease see advantages in the growing interest in gluten-related problems, so they’re reluctant to disregard them. Schluckebier described watching the number of studies on celiac and related conditions explode on the PubMed database.
The “impatient patients” who believe they have an unrecognized condition “may be helping drive some of the researchers who were never interested in this before,” Schluckebier said.
People with celiac disease have seen more immediate benefits, too. Bast described ordering food from an obscure Canadian company when she was first diagnosed with celiac disease more than 20 years ago. Now she can buy gluten-free food in Walmart and Whole Foods Market.
A study published last summer actually concluded a gluten-free diet doesn’t do much for people who don’t have celiac disease.
Nonetheless, gluten-free foods are expected to be a $6.6 billion market by 2017, according to the market research firm Packaged Facts. Food companies have pushed gluten-free foods through marketing efforts because the foods cost more. They’ve also sponsored some celiac awareness groups. The Celiac Disease Foundation gets most of its money from corporations, including General Mills and Frito-Lay.
For those with celiac disease, the increased availability of specialty products is a boon.
“We love people buying gluten-free food,” Bast said. “It increases availability and affordability. It gives us access to food.”
Doctors and people with celiac disease all agreed, however, that most packaged gluten-free foods are not healthy.
“Gluten-free junk food is still junk food,” Bast said.
Increased awareness of NCGS hasn’t been all good news for people with celiac disease. It’s gotten easier to buy gluten-free pastas and baked goods, but it’s become paradoxically more dangerous for to eat out at restaurants.
“Celiac disease is a real disease with real consequences. But the treatment for their disease has been trivialized, especially by restaurants,” Murray said.
Restaurants offer lots of gluten-free foods, and the vast majority of people who avoid gluten will do fine with a Caesar salad served with croutons that can be picked off. However, most people with celiac disease cannot tolerate lettuce that has been contaminated with gluten.
“We talk to people who have a medical necessity for gluten-free food,” Bast agreed. “The overuse of the term gluten-free undermines the disease concept.”
With all the buzz about gluten sensitivity, many have come to see gluten as something best avoided, just in case.
“People need to know that gluten is not inherently bad. There’s nothing about it that results in poor health or disease. It’s something that our bodies can metabolize without any problems for the most part,” said Lisa Cimperman, M.S., R.D., L.D., and a spokesperson for the Academy of Nutrition and Dietetics.
We asked Murray, who wrote the book on going gluten-free, if he eats wheat.
“Do I eat wheat? I’m eating wheat right now,” he said. “Wheat is the basis of western civilization. Without wheat there wouldn’t be a civilization.”
There should be no guilt about eating gluten as part of a healthy diet. But what should you do if you have genuine stomach troubles that you believe are linked to gluten?
Don’t Bypass the Doctor’s Office
It can be hard for people who believe gluten triggers their digestive woes to get a diagnosis.
“Let’s say someone is having issues with abdominal pain, bloating, diarrhea, constipation — you know, general GI symptoms,” said Cimperman. “Their first step should be to talk to physicians because the doctor needs to rule out any medical conditions that can be treated, say something like irritable bowel syndrome or actual celiac disease.”
Instead many people who have GI symptoms hear that gluten is a potential irritant and try going gluten-free on their own. But testing for celiac disease and wheat allergies relies on continued exposure to the suspected foods.
Doctors say it can be hard to persuade people who have already stopped eating gluten to go back to eating it for a few weeks as a trial.
“The fact that it’s a self-diagnosis really deprives people of getting the correct diagnosis, which might be celiac disease,” Green said.
People who have celiac disease need to know. Because the intestine suffers damage every time gluten is introduced, these people should never eat gluten or even share pots and pans with family members who do eat gluten. That kind of discipline can be hard without a concrete diagnosis.
Those who believe they have NCGS might actually have a wheat allergy, which would mean they could eat rye and barley but could not drink wheatgrass juice, as people with celiac can.
A gluten challenge doesn’t have to be as grueling as people think, Guandalini said. First, all people with celiac disease share a particular genetic pattern. It’s the marker of their risk. So a genetic screening can help determine whether someone needs to undergo a gluten challenge at all.
For those who need to do a gluten challenge to rule out celiac disease, the process may be shorter and less painful than they expect. Doctors used to say it took four weeks to elicit and identify signs of celiac disease, but newer research suggests two weeks is enough. And a gluten challenge involves such a small amount of the protein that only those with relatively severe celiac disease would feel sick from it.
For people whose genetic screening rules out celiac disease, the lack of a diagnosis can be frustrating, for sure. But there’s an upside, too.
“You can tell them, look, there is no test [for NCGS], but you certainly don’t have celiac disease, so go ahead with a gluten-free diet or abandon it. Enjoy your life, do what you want,” Guandalini said.
Cimperman takes a similar approach. If people continue to feel better on a gluten-free diet, she tells them to make sure they get enough fiber and vitamins B and D, and sends them on their way.
“If their symptoms are better on a gluten-free diet, I’m not going to change it. If it’s not broke, don’t fix it,” she said.
But in the majority of cases when gluten isn’t really the problem, symptoms return after a few weeks. Murray said these people then begin chasing the brief improvement they had — probably from giving the gut a rest by eating a little less — or by eliminating more and more foods.
Instead, the science shows, these people should try a low-FODMAP diet.
Though the FODMAP elimination diet is “pretty intense,” as Cimperman put it, people who cut out the foods that are at the root of their troubles will get long-term results. Eventually, they will likely be able to reintroduce higher FODMAP foods.
Editor’s Note: This story was originally published on April 16, 2015 and was updated by David Mills on August 12, 2016.
Appraisals system should be reviewed, say breast and prostate cancer charities
Monday, 15 August 2016
NHS cancer patients in the UK are still missing out on innovative treatments that are available in some comparable countries of similar wealth, say charities Breast Cancer Now and Prostate Cancer UK in a report* published today.
This is partly down to the appraisal systems used and their inability to negotiate on the price of drugs, says the report, which recommends an overhaul of the process.
The report reviewed the roles of Health Technology Assessment (HTA) bodies, such as the National Institute for Health and Care Excellence (NICE) in England and Wales and the Scottish Medicines Consortium (SMC) in Scotland, in assessing which new drugs are routinely made available on the NHS.
And it compared the availability of breast and prostate cancer treatments in England, Scotland, and Wales with five similar countries: Germany, France, Australia, Canada and Sweden.
While no country is perfect, there are elements of other health systems which could be assessed with a view to seeing if access to cancer drugs could be improved for NHS patients, it suggests.
Outside the UK, there is usually a split between two bodies: the HTA body that assesses the clinical effectiveness of a drug doesn’t also decide whether it is cost effective. In England, Wales and Scotland, NICE and the SMC, respectively, do both these tasks, but they don’t have any flexibility to negotiate with industry on price, it points out.
In these other countries, one HTA body makes clinical recommendations which then inform negotiations between government bodies and pharmaceutical companies. NICE and the SMC have responsibility for both functions.
NICE has not approved a single new breast cancer drug for routine use on the NHS in the past seven years, while just two treatments have been approved by the SMC in that time.
Following on from recent changes to the Cancer Drugs Fund (CDF), both charities are now concerned that access to new medicines in England may just become more restrictive. NICE will be entirely responsible for assessing new CDF drugs, yet the CDF was set up to counter repeated rejections of new cancer treatments by NICE, says the report.
For example, breast cancer drug Kadcyla, which was launched two and half years ago and is now available in Germany, Canada and France, can only be accessed through the CDF in England, and is not available at all in Scotland or Wales.
Both charities are now calling on the health secretary to review the current role of NICE, alongside the renegotiation of the Pharmaceutical Pricing Regulation Scheme in time for 2018, so that price negotiation can be brought into the appraisals system.
Drug prices could, for example, be increased or decreased after launch based on follow-up data from trials and different prices could be allowed for different indications of the same drug, as is the case in France—known as ‘multi-indication pricing’—recommends the report.
Current methodologies should be reviewed so that they are able to respond effectively to the new generation of treatments that are on the horizon, it says.
UK countries should also review their respective systems to ensure that the HTA process plays a key role but is part of a wider process, as happens elsewhere.
And the way drugs are assessed should be reformed to ensure that the process takes account of patients’ views of the full benefits of new drugs, because although UK systems have the most robust patient engagement, it is not leading to greater patient access, and currently benefits are assessed on a small sample of measures, ignoring crucial aspects like level of fatigue (a common symptom of prostate cancer), says the report.
Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, said: “That NHS patients are being denied access to innovative new breast cancer drugs, while other countries are finding ways to make them available, is totally unacceptable.
“This report demonstrates the need for serious reform of the way our health system assesses, and determines the availability of, the cancer drugs that patients rely upon.”
She continued: “Pharmaceutical companies must indeed start offering more responsible prices. But until our health bodies are empowered to negotiate the price of cancer drugs, patients in the UK will continue to miss out on new treatments being offered elsewhere.”
Heather Blake, Director of Support and Influencing at Prostate Cancer UK, added:
“Making all new cancer treatments available to patients is of course made challenging by finite NHS budgets that are stretched to capacity and running at a deficit. But men cannot continue to spend years fighting for access to every new prostate cancer treatment. They need a more streamlined system for assessing and appraising cancer drugs which makes the right decisions first time around.
“Although last month’s CDF reforms aim to address this issue, they place all the responsibility for patient access to new and innovative treatments on the pharmaceutical industry’s willingness to lower its prices meaning that cancer patients once again have the potential to be left in limbo.”
* International Comparisons of Health Technology Assessment. A report from Breast Cancer Now and Prostate Cancer UK
And most don’t think patients get specialist help quickly enough
Monday, 15 August 2016
GPs in England have little confidence in the ability of local services and systems to manage neurology patients effectively, amid additional concerns about unnecessary delays, reveals a report published today by the Neurological Alliance, a partnership of more than 80 national and regional organisations.
As of 2014, the estimated number of neurological cases in England was 12.5 million, or the equivalent of 59,000 cases per CCG nationally.
The Neurology and primary care report which assesses the state of primary care neurology services, principally in England, includes the results of a survey of 1,001 regionally representative GPs from across the UK (England, n=831) as well as the findings of an expert workshop convened in December 2015.
The report found that most (85%; 708) GPs in England are either ‘somewhat concerned’ or ‘extremely concerned’ about the time taken from referral for patients to see a consultant neurologist.
Over half (59%; 492) of respondents believe that the local services and systems in place in their area mean that people with neurological conditions frequently do not receive a timely diagnosis.
And most GPs in England (84%; 701) feel that they could benefit from further training on identifying and managing people presenting with suspected neurological conditions.
Fewer than half of GPs polled (47%; 392) felt confident in their ability to make an initial assessment and referral for people presenting with signs and symptoms of multiple sclerosis.
Among its key recommendations, the report suggests convening key neurology stakeholders to devise a checklist of the 10 indicative signs and symptoms GPs should look out for.
It also calls for support to improve the confidence of GPs in making an initial assessment and referral for people presenting with the different signs and symptoms of neurological conditions. This would include the Introduction of NHS England national minimum access standards and the roll-out of commissioning for value data packs.
Such initiatives would hold commissioners and service providers to account to ensure that patients are not disadvantaged from accessing neurological services due to their geographical location, says the report.
Funding for Public Health England and NHS England to support the Neurology Intelligence Network in collating and publishing data on service access for neurological patients should be ring-fenced, it says.
Alliance Chief Executive, Arlene Wilkie, said: “The polling data released today clearly shows a deeply worrying lack of confidence in the primary care pathway for people with neurological conditions.
“It is essential that NHS England and the Department of Health respond to these findings and engage with the concerns of GPs and people living with neurological conditions. Without an effective pathway through primary care, patients will continue to suffer the consequences of undue delays to referral, diagnosis and treatment, and outcomes will continue to suffer.”
Fears that health secretary’s clear message to base decisions purely on clinical need will be ignored
Monday, 15 August 2016
Despite a clear message from health secretary Jeremy Hunt that eligibility for cataract surgery should be driven purely by clinical need, and that any elderly person in need should be treated without delay, senior ophthalmologists and eye charities continue to be concerned that cash-strapped CCGs are disregarding his words amid the pressing need to save money.
“Our research continues to show that cataract operations are being restricted due to financial pressures on the NHS. This is forcing patients to live with unnecessary sight loss and a reduced quality of life,” said charity RNIB last week in an open letter sent to the health secretary.
Referring to the decision made by St Helens CCG to temporarily restrict cataract surgery to help it plug its financial deficit, the letter continued that this was “just one example of decisions being made as a result of cost-cutting rather than clinically-led. Whilst St Helens CCG has now dropped these plans, they are still exploring ways to save money and we’re concerned this could include cataract surgery.”
Cutting cataract surgery was a “false economy” for the NHS, the letter emphasised. “Denying treatment leaves patients at risk of social isolation and falls. Spending now to save someone’s sight makes financial sense as it costs health and social care budgets more to treat someone who has lost their vision,” wrote Dan Pescod Head of Policy and Campaigns at RNIB.
The letter urges the health secretary to call on CCGs to implement NICE guidance on cataract surgery.
The Royal College of Ophthalmologists has since issued a statement expressing concern that second eye cataract surgery might also fall victim to the financial squeeze.
College President Professor Carrie MacEwen said: “The [College] understands the financial pressures the NHS faces but we believe that any restriction, postponement or delay in cataract surgery made through commissioning decisions will not produce the efficiencies or cost savings expected.”
In February last year, the College published a NICE-accredited Commissioning Guide for Cataract Surgery to optimise cataract surgery services and help commissioners to work with a range of stakeholders, including the hospital eye service, community optometry services, general practice, social care, adjacent clinical commissioning groups, health and wellbeing boards, service users and carers.
“Recommendations about first and second eye surgery are made clear in our [guide] which is specifically aimed at CCGs. We know that hospital eye services are over-stretched along with a number of other specialties experiencing shortfalls in capacity. Meeting the demand has to be a priority for the NHS,” Professor MacEwen continued.
The College anticipates an increase of around 50% in the number of cataract operations needed over the next 20 years due to the aging population.
The evidence suggests that an older person with reduced vision from cataracts is twice as likely to fall, while vision impairment is recognised as a contributing factor in increased levels of depression and anxiety and has a wider financial and social care impact on local community and health services, it says.
“We ask the Department of Health and NHS England to work with The Royal College of Ophthalmologists to implement the solutions we are advocating in our Three Step Plan to raise the priority of hospital eye services and deliver a sustainable service to meet the inevitable increase in demand and reduce the risk to patients.”