Category Archives: Good News

Mums, you have a 1:200 risk of stillbirth – what can you do about it?

Sorting out the figures from the office of National Statistics is not easy. Comparisons between the 4 different jurisdictions are not obvious. Different countries produce figures in different years and the speciality is changing rapidly. Concentration of specialist services has been shown to work, provided transport links are good. Even remote areas of Canada and Australia can have good figures given the right infrastructure. The latest (2013) BBC report from Wales indicates there is a lot to be done in our poorest region. (Stillbirth rate ‘unacceptably high’ in Wales say AMs) The rates for the different Welsh regions are summarised and available in real time, and show that Cardiff and Vale trust is worse than Hywel Dda. 15 babies a year die daily (The SANDS charity) in the UK. It is time to address this, and locally led midwifery units at a distance from specialist centres may not help. Deprivation and smoking go together…

So what can you do about it? Mums can stop smoking, stop alcohol, stop drugs, reduce weight if obese, eat a better diet, keep active and fit, go to antenatal classes, and meet other mums for support. Moving to a richer area would not affect an individual’s risk, but if moving meant the specialist services for a high risk pregnancy were closer this might be well worth considering… The governments job is to treat populations and the illiberal success of the anti-smoking lobby is a major gain. Going privately may increase your chances of intervention (perverse incentives) and figures for private outcomes are not available from the UK. Australian results suggest worse outcomes.. Its an option not only to make the baby on holiday, but to have it away from home..

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There is good news in the latest statistics, but the BBC announced yesterday that there was only one country worse in the EU and that was Malta. There is much to be done.. The Times leader on Stillbirths – by Janet Scott of SANDS.

Chris Smyth reports in the Times 21st June 2017: Better care during birth could have prevented hundreds of baby deaths

Three quarters of babies who die or are brain damaged during birth could have been saved with better care, a study has concluded.
Hundreds die each year because mistakes are repeated and hospitals must improve heart-rate monitoring and staff communication, the report by the Royal College of Obstetricians and Gynaecologists said…. almost one in 200 babies is born dead…

and on June 22nd: Stillbirth rates decline for the first time in a decade

Stillbirth rates have started to fall for the first time in a decade, according to figures that underline the importance of pressing hospitals to take action.

In 2015 about 250 babies survived who would have died two years earlier, figures that recorded an 8 per cent drop in stillbirth rates suggest. Experts said that the fall would have to speed up to meet a target to halve stillbirths by 2030.

There are also still big variations, with death rates a third higher in the worst-performing areas than in the best-performing.

The Royal College of Obstetricians and Gynaecologists (RCOG) said yesterday that three quarters of babies who died or were brain damaged at birth could have been saved had they received better care.

It was the latest in a series of reports and safety initiatives underscoring repeated errors in maternity units that have appeared since The Times highlighted complacency in the NHS over stillbirths in 2012. The latest figures suggest that such messages are starting to filter through, with stillbirth rates falling from 4.2 per 1,000 births in 2013 to 3.87 in 2015, according to the most authoritative academic study…

…Overall in the UK the number of stillbirths fell to 3,032 in 2015 from 3,252 the year before, but deaths before and soon after birth still vary around the country, from 5 to 6.5 per 1,000…. Disappointingly, the findings show only a small reduction in neonatal death rates.”

…Deaths within the first week of life were 1.74 per 1,000 in 2015, compared with 1.84 two years before….

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Infant Mortality and Stillbirth in the UK – Parliament UK (2014) .pdf

Infant death rate ‘lowest ever’ recorded – BBC News (best in the affluent areas, and some areas saw worse results).

It does  not help when a charity (Kicks Count) is reported in the South Wales Argus 20th June:  Baby heartbeat detectors should be banned, says pregnancy charity when they really mean for unqualified patients.

In Scotland the Herald on 15th June reported the main reason for improvement: Smoking rate in UK second lowest in Europe after 25 per cent fall …

The long term results of rationing midwives and doctors in training…

“Reducing the ratio (of maternity staff in Surrey) to balance the books is the worst of all decisions.”

Stillbirths in all different UK systems are still too high

50,000 short – not £millions but staff…. 

and now we need more despite Brexit: (Chris Smyth June 22nd – NHS in talks to recruit Indian nurses to deal with staff crisis).

Michael Safi in the Guardian 2014: Babies born in private hospitals ‘more likely’ to have health problems – The Study, which looked at 700,000 ‘low-risk’ births in NSW, suggests higher rates of medical intervention could be the cause

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The Times leader on Stillbirths – by Janet Scott of SANDS.

 

 

 

Proton beam therapy arrives in the UK.

BBC News rightly reports some good news. The shaming of the health services by the case of Ashya King is recorded in the posts below. Ironic that Wales has the first UK Proton Beam therapy, but I suspect a lot of political machinations were done to get an edge over England… It has taken 27 years since the first Proton Beam therapy in 1990…

UK’s first proton beam machine arrives at Newport clinic

UK to get first proton therapy centre after Ashya King’s plight raised awareness of vital cancer treatment – The Telegraph 20th May 2017

Patrick Hill in the Mirror today: You’re still failing him: Parents say brain cancer survivor Ashya King is being refused vital treatment by the NHS – Plight of boy, 8, hit the headlines when his mum Naghmeh and dad Brett took him from a hospital without consent to get pioneering treatment abroad

In 2014 Joan Smith gave a balanced account of the case for the Independent: Ashya King: This story isn’t quite what it seems – The five-year-old isn’t dying – but nor is he getting the urgent treatment he needs, despite Jeremy Hunt’s extraordinary offer

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Crisis – what crisis?

Proton Beam Therapy – it’s covert rationing in all UK regional health services since 1990!

It was rational rationing: but it revealed the lack of Proton Beam therapy in the UK: a shame on the Health Services

D.C. approves proton beam cancer centers

The English Health Services have finally been shamed into action by Ashya Prague’s parents. Proton beam centres ‘to treat 1,500 patients a year’….

I told you I was ill. Playing a short and irresponsible game: Ignoring the long term, and best advice, comes naturally to Politicians on both Health and the Environment….

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The Hacking reveals a collusion of anonymity for responsibility for rationing…

Update 13th May 2017: Mark Bridge May 13th in the Times: Outdated technology offers easy pickings

As readers know NHSreality says there is no NHS, but a regional system. The rationing of services, and this includes IT, is the responsibility of the Trust Boards, and commissioning groups in England. An inability to provide the requisite upgrades to computer systems is a decision made at a higher level. IT managers, paid much less than those in the private world, are rewarded by job security (never get sacked), but they have failed to use their leverage and knowledge to force the changes needed. The debate would have been puerile, if it ever happened at all. On December 8th NHSreality posted: Hackers get easy route to patient data – still on Windows XP but we have no sense of sangfroid, only sadness. The Hacking reveals a collusion of anonymity for responsibility for rationing…

“The first duty of government is to keep the nation safe”. (Amber Rudd on Radio 4 this am) The Health Services are part of this safety, but the net has been holed in so many places, and the responsibility for errors leading to potential disasters such as this is missing. NHSreality predicts that no heads will roll, and the media will fail to find a scapegoat.

The good that may arise is that computer systems may be updated. GPs in Wales were in charge of their own systems and backup until 5 years ago. The Welsh Government took over the computers, put all the data in one central server, and connected to the periphery by BT lines . ( Virtual Private Networks ) I recommended to my own practice that we had our own independent back up system which would ensure that, if the government server failed, or the lines were sabotaged, that we could perform our daily work. My recommendation was rejected but the idea needs re-visiting, even though Wales was unaffected on this occasion.

There is so much evidence for rationing, not prioritisation when it is “all or none” as in IT. Here are some articles/news from the last 24 hours:

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Laura Donelly in the Telegraph: Thousands of children and teenagers with anorexia forced to wait months for help

Chris Smyth in the Times: Hospital backlog is worst for decade – A&E units had their worst year since 2003, with one in ten patients not being seen within four hours and Patients wait longer as GP jobs lie vacant and, initially reported in the Shropshire Star: Nurses ‘forced to buy pillows for patients’

and because of the rising anger even a cancer sufferer is standing against the Minister for Health: The Deathbed Candidate. Getting nearer and nearer to “posthumous voting” isn’t it?

Paul Gallagher opines in the Independent: General election 2017: what role will the NHS play among voters? and implies Theresa May is more trusted than the others…. but this was written before the latest Hacking.

NHSreality trusts none of the parties. They are all lying. It is only going to get worse. Patients are going to wait longer. (Personnel Today) More and more, those who can afford it, will go privately.

Health Reform – Rationing for rare and complex conditions is wrong, and against the concept of a “mutual”.

The debate is puerile. There is no addressing the real issues..

NHSreality on IT systems

Hackers get easy route to patient data – still on Windows XP December 8th 2016

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Vaccine credited with HPV virus reduction in Scotland

Without vaccinating boys there is not enough herd immunity. Somehow I feel this report may be rubbish, but on the surface it seems good news. We have made the same mistake as for rubella (German measles) and tried to save money by only vaccinating females.

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BBC News reports good news from Scotland 5th April 2017?: Vaccine credited with HPV virus reduction in Scotland

A campaign to vaccinate girls against a cancer-causing sexually transmitted infection has led to a dramatic drop in reported cases.

Researchers have found a 90% fall in levels of the human papilloma virus (HPV) in Scottish women since the vaccine was made available in 2008.

HPV virus types are thought to account for about 90% of cervical cancers.

Scientists hope the drop in HPV cases will lead to a significant drop in future cervical cancer cases.

The researchers, led by senior epidemiologist Dr Kevin Pollock at Health Protection Scotland, said they hoped to see a decrease in new diagnoses within a year.

He told BBC Radio Scotland: “The two HPV types we were vaccinating against – HPV 16 and HPV 18 – cause about 70% to 80% of cervical cancers within Scotland but the vaccine has exceeded our expectations because it appears to have knocked out another three high-risk HPV types which cause about 10% of cervical cancers.

“So we do forecast within the next few years a 90% reduction in cervical cancer within Scotland.”

Researchers compared the cervical screening and vaccination records of women born in 1995, who had been vaccinated as teenagers, with those from unvaccinated women born between 1989 and 1990.

They found just 0.5% of women from the 1995 group tested positive for the virus, compared with 21.4% of women born before 1990.

The study also showed evidence that the vaccine protected against three other high-risk HPV genotypes involved in the development of cervical cancer.

‘Significant impact’

The research will be presented to the Microbiology Society’s annual conference in Edinburgh on Wednesday by Dr Kate Cuschieri, director of the Scottish HPV Reference Lab.

She said: “These new findings indicate that the positive impact of the HPV vaccine may be even greater than we initially thought.

“Collectively, these data demonstrate the significant and continued benefits of the HPV vaccination programme in Scotland, which has achieved a consistent and high uptake of around 90% in 12 to 13-year-old girls.”

Dr Pollock added: “The very high uptake of the HPV vaccine is strongly associated with these massive reductions in high-risk HPV types that are known to cause approximately 90% of cervical cancer in Scottish women.”

He said the virus was also known to cause a number of other cancers, including vulvovaginal, anal and a subset of head and neck cancers.

“These results suggest that this vaccine will also have a significant impact on these cancers in the years ahead”, he said.

The research, which was funded by the Scottish government, looked at samples from more than 20,000 women, making it one of the largest population-based studies on the impact of the vaccine.

There were 388 new cases of cervical cancer in Scotland in 2014.

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Precedent? Rationing becomes reality to politicians in Scotland. Now to work out how to do it best?

Its ironic that Scotland is short of doctors, GPs especially, when it trains more per capita than any other UK region. Rationing is becoming reality to politicians in Scotland. Now we need to work out how to do it best?

This is such an important precedent. Health Boards are an arm of government. If this “decision” to ration overtly is not challenged by Westminster, then the  other 3 UK Regional Health services can go ahead and ration overtly rather than covertly. Once accepted then the principle applies that we need to be universal over important expensive treatments (such as cancer), and to avoid post-code rationing whenever possible for “fearful” conditions. Rationing will be needed at the top (expensive) and at the bottom (cheap and high volume) end of care. We might agree to pragmatically accept post code differences at the bottom end but surely not at the top end. Now lets hear from the politicians…

on April 3rd 2017 in the Times Scotland edition Helen Puttick reports: System for rationing NHS care developed for Scottish boards

A scoring system for rationing hospital and social care is being developed for care boards in Scotland.

The £250,000 initiative, similar to that used by drugs watchdogs, will pay for a team of economists to create a framework that the NHS and councils can use to decide where to cut funding in services and where to invest.

The move, supported by the Chief Scientist Office, is part of the drive to shift spending away from hospitals into the community to prevent ill health and look after the frail elderly better in their own homes.

Scotland’s new care boards, which manage both community NHS and social care services, could use the system to weigh up controversial decisions, such as whether to maintain a local hospital service or instead create a “hospital at home” team taking more treatment to people’s homes. It is intended to work in the same way as the Scottish Medicines Consortium in Scotland and the National Institute for Health and Care Excellence (Nice) in England, which make often-contentious judgments on which drugs are to be made available to patients on the NHS.

Professor Cam Donaldson, a health economist at Glasgow Caledonian University, who is leading the team, said difficult decisions needed to be made about which services were of most benefit to most people.

In any system that was free “the needs outstrip the amount of resources available” he said, and with the NHS and social care, “that has become an acute problem recently”.

“What we really need to put in place are more robust processes to help health and social care partnerships to manage scarcity,” he added. “Difficult decisions will need to be made in Scotland about which services to fund and to what extent, and which existing services to scale back.”

With little or no increases in global budgets, frameworks need to help shift resources “from low-value services . . . to higher-value services in areas of most need”.

Nice and the SMC evaluate new drugs to decide which the NHS should buy based on the amount of extra quality of life they offer for the price. Professor Donaldson compared the methodology his team will create to this system, but noted that there were some marked differences. For example, the new framework will have to consider where to cut expenditure as well as what to fund.

Professor Donaldson said that the results of a public consultation would also be a factor and the process would be transparent, ethical and have some form of appeals system.

Without such a framework, he said, there was a risk that “whoever shouts the loudest most recently” would receive funding. Resources, he noted, might have to be taken from services that were still productive but deemed less effective than other options.

The £244,000 funding will pay for the development of the system and for four care boards to test how well it works.

At a time when countries around the world are grappling with how to care for a growing elderly population, the research is seen as pioneering. Professor Donaldson said: “A study of this nature has never been undertaken before and would place Scotland at the forefront of this important field of social and economic policy.”

Donald Cameron, the Scottish Conservatives’ health spokesman, said: “Anything that could provide a fairer way for deciding what course of action to take with a patient certainly deserves to be considered. However, any system that is put in place must be equitable and would need to be regularly checked and updated to ensure that it is meeting the needs of patients.”

All main political parties’ pledges for NHS will prove inadequate, says former chief executive

David Lock in 2014 in the Guardian: Rationing NHS care: why we need a serious debate 

 

We need tiered rationing according to means… Drugs costing 8p a day could be  hit by ‘devastating’ NHS rationing plan.. What a good idea. 

Many countries are considering ways to prevent the expensive new patented drugs coming to market quickly. Every year delayed saves money, and the closer to loss of patent the greater the saving. There is a dissonance here. Individuals, their physicians, and of course drug companies, want all the drugs possible, but governments are concerned with populations and their investment should not be in new treatments for rare conditions they cannot afford.. Overt rationing on cost alone would be honest, but would create a health divide amongst individuals: something government has a duty to avoid? We already know that the gini coefficient (wealth inequality) enumerates the wealth divide: do we need another coefficient for the health divide? It is becoming evident that we need tiered rationing according to means.. But the 8p suggestion will never happen because of the politicians. Any one who endorses it will lose their seat..

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John Crowley in the Observer 3rd Jan 2017 reports: The US Has Slowed the Pace of Drug Approval and It’s Costing Lives – Rare Disease Day Offers Great Chance to Revisit Promise of Orphan Drug Act

More than 30,000,000 Americans live with any one of over 7,000 rare and often devastating genetic diseases. This week, in observance of the 10th Anniversary of Rare Disease Day, millions of people around the world will meet with policymakers, hold events and use social media to raise awareness about the impact rare genetic diseases have on people’s live. The slogan for this year’s campaign is “with research, possibilities are limitless.”…..

Laura Donelly in the Telegraph 15th March 2017 reports: Drugs costing 8p a day could be  hit by ‘devastating’ NHS rationing plan  

Drugs costing just eight pence a day could be denied to NHS patients under “devastating” new rationing plans, charities have warned.

Under the plans, health officials will be able to delay introducing life-extending treatments for up to three years, after they have been found to be effective.

The cap is likely to affect one in five new treatments, with cheap drugs which could help large numbers of patients affected, as well as high cost drugs.

Ben Hirschier of Reuters reports 15th March 2015: New UK drug cost rules leave companies fuming

British drugmakers on Wednesday accused Theresa May’s Conservative government of breaking a manifesto commitment to improve access to new medicines, following approval of new cost rules that take effect on April 1.

The angry response from both Big Pharma and biotech firms comes despite a concession by government in the latest version of the scheme, which increases the cost threshold for certain drugs for rare diseases from the previously planned level.

Some charities, including the Alzheimer’s Society, also expressed concern that the measures could mean delays for people with serious conditions in getting new treatments.

The row comes at a sensitive time for the government, which is about to trigger proceedings to leave the European Union but wants to encourage investment by strategic industries, including the high-tech pharmaceuticals sector.

Drug companies are already concerned that Brexit could make Britain a less attractive market, especially if the country ends up outside the current EU-wide system for drug licensing.

The National Institute for Health and Care Excellence (NICE), which determines the cost-effectiveness of new drugs, and NHS England say their new procedures will fast-track the availability of drugs that offer exceptional value.

But drug industry executives believe few, if any, new medicines will actually benefit from this provision and the overall impact of the changes will be outweighed by newly introduced budget curbs.

“Today’s proposals from NICE/NHS England break the Conservative Party’s 2015 manifesto promise to speed up the introduction of cost-effective medicines into the NHS,” said Mike Thompson, CEO of the Association of the British Pharmaceutical Industry.

The new system means that new drugs costing the National Health Service (NHS) more than 20 million pounds ($24 million) a year will no longer be automatically funded, even if they are cost-effective. Instead, companies will have to enter negotiations to justify their use and work out funding.

Alzheimer’s Society CEO Jeremy Hughes said any new drug to help all 850,000 people with dementia in Britain would have to cost just 23.50 pounds a year to fit the threshold.

Similar limitations will apply to drugs for very rare diseases that cost more than 300,000 pounds for each year of high quality life delivered.

Previously, the proposed a cap for rare diseases had been 100,000 pounds but NICE CEO Andrew Dillon said the authorities had revised the plan after listening to feedback.

Even at the higher level, drugmakers argue the introduction of cost caps for medicines treating a handful of patients would be damaging and could threaten the flow of new medicines.

Significantly, the new rules apply only to England, leaving a different system in place for Scotland.

“They will build a Hadrian’s Wall for English patients who will no longer be able to access innovative new treatments that will continue to be available in Scotland,” said Steve Bates, CEO of the BioIndustry Association.

(Reporting by Ben Hirschler; Editing by Ruth Pitchford)

NHSreality wants scapegoats – and suggests the successive ministers of health (for England). Allyson Pollock might agree..

Tell Wales it isn’t working. Inequality is increasing…. better to “aspire to excellence”.

Inequality revisited.

 

Woman with terminal cancer feels ‘abandoned by Stormont’

The recurrence of fear, and the threat of Social Unrest are held in this post, and the link below to a previous post. We need to “know”, and politicians need to show, that the government cares. Its not enough for politicians to just say they care, and never act.. Walk the walk, not talk the talk. It is good news that there is a “New drug for one in five breast cancers”, (BBC News 14th March 2017) but surely health implies care as well as cure. Ms Kennedy needed to feel cherished even if her disease was incurable..

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Catherine Smythe reports from N Ireland 9th March 2017: Woman with terminal cancer feels ‘abandoned by Stormont’

A woman with terminal cancer has said she feels people like her have been abandoned by politicians at Stormont.

Melanie Kennedy felt so strongly about the state of the health service and lack of stable government that she ran as an independent candidate in last’s week’s election.

The mother of two polled 1,246 first preference votes in North Down.

She said it showed that ordinary people are concerned about issues like cancer drugs, waiting lists and mental health.

“With no government and no health minister – it makes me feel like there’s no-one there to fight my corner. It’s heartbreaking,” she said.

‘Driven to this’

Ms Kennedy made her comments as a number of health organisations warned that the continuing political impasse is preventing vital health and social care decisions being made.

The County Down woman was first diagnosed with breast cancer in 2013. While she was initially optimistic about her recovery, she has since been told by doctors that the cancer has spread to her liver and that her condition is terminal.

This experience and finding out that patients in Northern Ireland cannot access the same specialist drugs as those in England drove her to political action, despite her illness.

“For someone in my situation who is on quite harsh treatment, I was driven to this – it took a lot for me to act and create a campaign, but I felt I had to try and fight for justice for cancer patients,” she said.

Ms Kennedy said while the election process took a lot out of her, she has no regrets about standing as a candidate.

“People wanted to talk about real issues such as the health service, education for their kids. While legacy issues are also important, so is the here and now,” she said.

Ms Kennedy said that while the politicians talk, patients are being let down.

“The health service in Northern Ireland was already behind other parts of the UK, there was a lack of long-term stability and strategy and now we’re back to square one. It is the ordinary people like me who are suffering.”

She said time is a luxury that she and other people who are terminally ill cannot afford.

“The reason I started all this was that I asked myself, ‘where do I turn?’

“I could be told in the next couple of months, there’s no more treatment for me and I should go home and make my plans and say good goodbye to my children,” she said.

“It’s almost negligent that there is no cancer strategy from the politicians here in Northern Ireland. Early treatment is critical – it can mean the difference between getting well and going on with your life and ending up in my shoes. I don’t want anyone else ending up in my shoes.”

Cynical de-commissioning bringing back fear.. Dying patients waiting hours for pain relief in NHS funding shortfall.

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