People who once had a slim chance of surviving childhood will add to care crisis | Amelia Hill

The health and social care system is not only struggling to meet the care needs of our ageing population, it is completely unprepared for the consequences of looking after growing numbers of older people with extremely complex health problems. That’s the conclusion of Karen Lowton, a professor of sociology at the University of Sussex who specialises in ageing and health.

Whereas 40 years ago a child born with cystic fibrosis, severe congenital heart defect or Down’s syndrome had a slim chance of surviving childhood, let alone reaching adulthood, now there are more adults than children living with these conditions. In addition, people with HIV are also growing older. This is a “remarkable testament” to advances in medicine, says 49-year-old Lowton. But she warns that these success stories are set to create another crisis for an already stretched social care system, as this diverse group of people’s care needs increase with age.

“As these individuals grow older they will experience even more health problems,” she says. “And because no one has reached old age with these conditions before, many of the health and psychological problems they will face are impossible to predict or prepare for.”

Although the Cystic Fibrosis Trust has a national database of UK patients, there are hardly any other national patient registers for these groups. This means it is difficult to know exactly how many people will require lifetime specialist care and exactly what care they will need.

What is certain, adds Lowton, is that even more people will require in-patient and outpatient care from specialist health services as survival ages increase, not only for physical but also mental health; depression and anxiety are common features of these conditions for adults. “Although clinicians are broadly aware of the challenges to come, none of the clinical services are prepared for the increase in demand and increasing complexity that these now-adult conditions will bring.”

A 40-year-old with cystic fibrosis will need to spend additional time taking more medicines and treatments not only for their cystic fibrosis but also for the health conditions that arise from it such as osteoporosis and cystic fibrosis-related diabetes. They may require a lung transplant as their disease progresses.

An adult with a severe congenital heart defect is likely to experience complications such as arrhythmias and heart failure.

An older adult with Down’s syndrome will need to have a plan for their future as their parents age and become less able to support them. Those living in supported accommodation are likely to need increased support from social services as they grow older, which may involve a move into a care home. And they have a higher risk of Alzheimer’s disease and of developing symptoms at an earlier age.

A person growing older with HIV may experience longer-term side effects from their medication, as well as symptoms of chronic illness at a younger age than the general population. Many older HIV-positive people live alone with little family support and few financial resources.

“I think the key difficulty for providing proper health services for these ‘new’ ageing populations in adulthood is that our definition of success in this context is so focused on the short-term,” says Lowton. “The current crisis in the NHS reflects our concerns about patients’ immediate care needs rather than considering what our health and social care services will also require in the future in order to care for patients.

“We are unwilling or, perhaps, incapable – due to our parliamentary cycles and the current government’s ethos of austerity – of looking ahead to see what type of support, intervention and care these ‘new’ ageing populations will need, and how we, as a society, can provide it.”

Lowton says there is little recognition at the Department of Health of their long-term medical and social wellbeing. “The £22bn hole in the NHS’s finances doesn’t bode well for these ‘new’ ageing populations with their expensive-to-treat, lifelong conditions,” she says.

It’s impossible to say how much these conditions could add to the social care bill, because we don’t yet have a good idea of exactly how many ‘new’ ageing populations there are growing older, Lowton explains.

“We also don’t know how health in later life will be experienced, although it is likely that people will experience even more complex conditions as they grow older. Whatever the cost, these populations will be a substantial addition to the current health and social care bill,” she adds.

So what should be done? Lowton cites a number of ways to help to mitigate some of the issues, including ongoing and regular clinical oversight, more support for mental health, more resources for specialist adult clinics, more knowledge and skills training for carers, and more support for families who help to care for these adults.

“The need for care in adult life is a problem that most professionals working in the health and social care fields acknowledge, although to date there has been little development of innovative care solutions for these ageing groups,” she says.

“Worryingly, these groups are now being pitted against each other when funding for new treatments is considered.” For example, NHS England’s response to the judicial ruling that it should fund pre-exposure prophylaxis (PrEP) for people at risk of HIV was that it would be at the expense of funding other treatments such as ivacaftor, a novel personalised medicine for children with cystic fibrosis.

What we must not do, says Lowton, is to lay the problem of increasing care costs at the feet of the people who experience these types of conditions or to think that meeting their care needs is utopian. “Life is tough enough for them as it is,” she says. “As a society we need to appreciate that the significant resources we invest in these ‘new’ ageing populations at the beginning of their lives need to be sustained throughout adult life and into old age.

“We do need to support the scientists who focus on finding a cure, but we also need to support all these adults for whom a cure will come too late.”

Curriculum vitae

Age: 49.

Family: Two grown up sons.

Lives: Orpington, Kent.

Education: Newstead Wood School, Orpington; King’s College Hospital, registered nurse training; Kingston University, IBSc (Hons) health studies; St George’s Hospital Medical School, MSc health sciences; Royal Holloway (University of London) PhD in medical sociology.

Career: 2015-present: professor of sociology (ageing and health), University of Sussex; 2006-14: senior lecturer, Institute of Gerontology, King’s College London; 2003-06: lecturer, Florence Nightingale School of Nursing & Midwifery, King’s College London; 2001-03: research fellow, King’s College London and St Christopher’s Hospice, Sydenham; 1996-2000: doctoral student, Royal Holloway (University of London); 1994-96: research sister, St George’s Hospital Medical School, London; 1989-94: staff nurse positions in intensive care units at St Thomas’ Hospital, London (1991–94); Royal Surrey County Hospital, Guildford (1990–91); Royal London Hospital (1989–90).

Public life: committee member, European Society for Health and Medical Sociology.

Interests: Spinning, climbing, theatre, literature.

People who once had a slim chance of surviving childhood will add to care crisis | Amelia Hill

The sad truth about having a baby: ‘cattle’ care is now the norm | Milli Hill

It’s the most important, meaningful and – for many – anxiety-provoking day of your life. You’re going to experience the rare privilege of being at the centre of the action as a new life begins. Added to this, you may well be naked and somewhat indisposed. Who would you choose to be with you? Someone you know and trust? Or a total stranger? It’s a no-brainer, isn’t it?

And yet a report published today by the National Federation of Women’s Institutes (NFWI) and childbirth charity the NCT has shown, yet again, that this most obvious of human needs is simply not being met for women. Rather than being accompanied by a familiar and trusted figure, most women (88%) surveyed did not know their midwife when they went into labour or gave birth. Of these women, 12% said this made them feel alone and vulnerable, and 6% said they felt unsafe. Comments were made comparing treatment to that of cattle, and like being on a conveyor belt.

One solution women could opt for – an independent midwife –has also just been removed

The report also highlights that as many as 50% of women are experiencing so-called “red flag events” in their labour – situations which are seen as warning signs of understaffing, such as women having to wait more than 30 minutes for pain relief, or more than an hour to receive the stitches they need.

Midwife shortages have long been highlighted; the last estimate by the Royal College of Midwives in 2016 suggested that 3,500 more were needed to meet the rising birth rate. And the impact of shortages reaches far beyond red flag events. The effect of not being able to establish a relationship with your midwife begins long before you are in stirrups waiting for stitches: research has shown, for example, that women who know their midwife are 24% less likely to experience pre-term birth, and are 16% less likely to lose their baby during the pregnancy.

Knowing your midwife also means you are more likely to have a vaginal birth, and less likely to experience interventions such as forceps or episiotomy. And women who experience continuity of care repeatedly report higher levels of satisfaction, an increased sense of agency and control, and more positive birth experiences. After the birth, as the NFWI/NCT report highlights, almost one in five women are not seeing a midwife as often as they need to, let alone one with whom they have a relationship. This is a vital yet neglected time for maternal mental health.

We know this – all of this – and have done for some time. We know that relationship-based care is better for women, and we know that we need many more midwives to raise services up to this standard. We also know that this is what midwives themselves want, with many feeling burnt out by a system that – as one person who had left after 30 years in the NHS anonymously told me – demands that they are “with computer”, rather than, “with women”.

Indeed, the recent Maternity Review highlighted “continuity of carer” as one of the key priorities in improving birth. And yet, in the current system, it seems to be harder and harder to come by. Women who I meet via my organisation, the Positive Birth Movement, often report fragmented care experiences in which they have to repeat their histories to each new midwife, a situation which is at best frustrating, and at worst dangerous. Getting the birth you want in the setting you wish for can also be a tough battle: home births can be denied due to lack of staff, midwife-led units closed or full, and higher-risk women such as those with twins or breech babies left feeling they have limited options in a system that is over-stretched and depersonalised.

One solution women could opt for, and which I chose for my own second and third births, has also just been removed: the option of an independent midwife. These self-employed midwives with huge expertise in normal birth, can – for a fee – attend you personally at every step of your pregnancy, birth and postnatally, in your own home. However, this week the Nursing and Midwifery Council has ruled that their insurance arrangements are insufficient and has effectively shut them down overnight, with many of their clients being left without a midwife. The charity Birthrights has said that the decision “directly jeopardises the health and safety of the women it (the NMC) is supposed to safeguard”.

NHS England has today offered assurance that the Better Births initiative, now being rolled out in pilot schemes following the recommendations of the Maternity Review, will provide women with “access to a small team of midwives for continuity throughout pregnancy, birth and postnatally”. We can live in hope, but right now, this level of care – which both women and midwives want and deserve – seems a long way off, and conveyor-belt care, or worse still, being treated like cattle, is more likely.

The sad truth about having a baby: ‘cattle’ care is now the norm | Milli Hill

Dr. Oz Grilled On The Hill

I met Dr. Mehmet Oz after, at the 1st Forbes Healthcare Summit. He dropped in on a pre-event soiree to say a couple of phrases to the attendees. He was significantly taller than I had supposed, producing it effortless to spot him in a crowd, so I pushed my way by means of and introduced myself (our host, Steve Forbes, was also making his way above so I knew I would only have a brief possibility). I shook his hand and praised him as an superb communicator, but expressed concern about his message. What ever else Dr. Oz may say in the course of his present, my sufferers heard only about the “latest fat loss miracle.” His response: “Well, I really don’t endorse any merchandise.” The Forbes’ arrive, I am carried away by the crowd.

When we use the much more rational bits of our brains, we know that any miracle that is supplanted by another in a couple of months demands a new title (“You keep utilizing that word…”).  We in the reality-based mostly healthcare community are frequently observed as moist blankets, constantly critiquing the charismatic heart surgeon for his irresponsible boosterism of ineffective (but not cost-free) dietary supplements and procedures. These days, we left the part of Cassandra behind.

Several of us have been worried when Dr. Oz was invited by Senator Claire McCaskill (D-Missouri) to testify in front of a buyer safety panel about fat reduction scams. A modest part of my held out hope that the invitation may well hold some surprises for Dr. Oz, and thankfully it did. Rather than inquire Oz for his professional viewpoint about the recent threat of excess weight loss scams, Dr. Oz was set up as yet another kind of professional: a promoter of these scams. (NB: quotes transcribed by me)

Senator McCaskill: You are becoming manufactured an illustration of today simply because of the electrical power you have in this space. We didn’t phone this hearing to beat up on you but we did get in touch with this hearing to talk about a genuine crisis in customer protection. You can either be component of the police here or you can be element of the issue.

Ouch.

Senator McCaskill isn’t some starstruck fan. She did her homework, and she brought her A-game. The senator commenced out by quoting to Dr. Oz a amount of his “miracle” excess weight reduction proclamations. Get a search at the whole exchange:

Dr. Oz: Effectively, if I could disagree about whether they perform or not, and I’ll move on to the concern of the words that I employed. And just with regards to whether or not they operate or not, take green coffee bean extract as an instance. Uh, I’m not gonna argue that it would pass FDA muster if it was a pharmaceutical drug seeking approval, but among the all-natural merchandise that are out there, this is a solution that has many clinical trials. There was one particular large 1, a very great top quality a single, that was done the yr that we talked about this, in 2012. Pay attention, I’ve…

Sen. McCaskill: wh..wha..I wanna know about that clinical trial. Since the only one particular I know was sixteen people in India that was paid for by the firm that, that was in reality, at the point in time when you at first talked about this being a miracle, the only examine that was out there was the a single with sixteen individuals in India that was written up by someone that was currently being paid by the organization that was making it.

Dr. Oz: Properly, this paper argue that there was no one particular having to pay for it, but I have the, 4 papers, five papers really plus a series of simple science papers on it as nicely. But, but Senator McCaskill, what, if I, we can spend a whole lot of time arguing the merits of regardless of whether green coffee bean extract is worth attempting or not really worth attempting. Maybe the issues that we argue you do with regard to your diet plan are likewise criticizable, I indicate should you be on a minimal body fat diet plan, a lower carb diet regime, we b…I spent a excellent component of my career recommending that individuals have a low excess fat diet program, but we’ve come total circle in that argument now and no longer suggest that now, a lot of of us who practice medication simply because it no longer worked for our individuals. Now it is remarkably complicated, as you know, to figure out what performs for most folks even, in a dietary plan.

In the practice of medicine we evolve by looking at new tips and tough orthodoxy and evolving them. So…so when I hold…these are the 5 papers, these are clinical papers, uh, and we can argue about the quality of them, really justifiably, uh, I could pick apart papers that showed no benefit as properly, but, at, at the finish of the day, I have clinical topics, genuine folks, having undergone trials, and in this case I actually gave it to member of my audience it wasn’t a formal trial, it was just an exch…

Senator McCaskill: Which wouldn’t pass…the trial you did with your audience, you would not say that it would ever pass scientific muster.

Dr. Oz: No, I would in no way publish the paper. It wasn’t carried out below the proper IRB advice, that wasn’t the goal of it. The purpose was for me to get a thumbnail sketch, was this well worth talking to people about or not. But once again I really don’t  think this need to be a referendum on the use of substitute health-related therapies ’cause if that is the case then I’ve been criticized for having individuals come on my demonstrate and speak about the electrical power of prayer. Now yet again as a practitioner I can’t show that prayer aids people survive an illness, I..

Senator McCaskill: Sure, but it’s challenging to get prayer.

Dr. Oz: Hard to get prayer. That is the variation.

Sen. McCaskill: Prayer is cost-free.

Dr. Oz: Yes, prayer is totally free, that is a very very good stage.

This quick exchange reveals a great deal about how Oz, charlatans, and snake oil salesmen function. They evade. They ignore the question and reply their personal. He cited research and when he was referred to as out on what appears to be a blatant lie, he simply modified the topic.

This is not the conduct a single would assume of what the Senator referred to as “someone skilled in science-based medicine”.  I’ll admit, it was very good to see him sweat. But I hope that isn’t his last discomfort.

McCaskill explained, “I really do not get why you need to say this stuff, ’cause you know its not real.”

To her I would ask, Cui bono? Is it only Dr. Oz and the firms who just come about to advantage from the goods that he “doesn’t endorse?” I surely don’t know, but I hope an individual keeps asking.

Dr. Oz Grilled On The Hill

Stepping Hill nurse charged with 3 "saline deaths" murders

Police are carrying out an investigation into the contamination of different medical products among June 1 and July 15, 2011 at the hospital.

Eight sufferers who had been poisoned by contaminated products later on died.

They had been Tracey Arden, 44, Arnold Lancaster, 71, Derek Weaver, 83, William Dickson, 82, Linda McDonagh, 60, John Beeley, 73, Beryl Hope, 70, and Mary Cartwright, 89.

Chua is charged with murder above the deaths of Ms Arden, Mr Lancaster and Mr Weaver.

The father-of-two, from Stockport, was very first arrested in January 2012 and later released on bail.

Assistant Chief Constable Steve Heywood said: “Our thoughts continue to be with these folks who had been deliberately poisoned and their families.

“From day one we created a dedication to individuals people, as nicely as the wider neighborhood, to completely and robustly investigate what occurred.

“In shut to three many years we have carried out many painstaking inquiries and engaged with quite a few healthcare specialists.

“We are now at a level exactly where we have charged Victorino Chua with a quantity of quite critical offences.”

Stepping Hill nurse charged with 3 "saline deaths" murders