Dore are in financial trouble – again

I, and other bloggers (here, here and here), have previously covered the collapse of Dore, a business promoting an unscientific and ineffective treatment for dyslexia and other specific learning disorders, into administration and their subsequent reincarnation, fronted by former rugby player, Scott Quinnell, as Dynevor CIC, a Community Interest Company (CIC), under the Dore brand.  Now Dynevor have released their accounts and it looks like the new business is in as much financial trouble as the old one was.

Despite an £810,000 investment from shareholders, the liabilities of Dynevor outstrip their assets by £215,462 as of 31st December 2009.  However this calculation assumes that the Intellectual Property (IP), the Dore method and branding, is worth £115,046.  It is not specified how Dynevor calculated this figure, but it can only be an estimate as IP is essentially intangible and its value can only be inferred from its potential to increase profitability.  Given that Dynevor’s IP is not considered credible by experts in learning disorders and the failure to create a profitable business out of it it can be reasonably inferred that Dynevor’s estimate of its worth is highly optimistic. It is thus likely that assets minus liabilities as given is an underestimate.

The accounts also point to problems with establishing a profitable client base.  The companies debtors (presumably mainly customers paying via finance schemes) and cash in the bank are worth £102,023 and £105,110 respectively.  They owe their creditors £212,357 within one year, a deficit of a few thousand pounds that only results in a positive value for net current assets as they have ~£30,000 of stocks, which naturally depreciate.  Given that the programme costs ~£2,000 pounds this implies a client base of little more than 100 customers at most.  While this might sound like a lot for a small business, there are likely about 15 staff on the payroll, it is clearly not enough to be profitable and even if they pay their staff no more than £10,000 it is hard to see a steep rise in profits any time soon.  This seriously questions their survival given that they owe ~£500,000 in the long term.

Dynevor were asked to comment on their profitability but did not respond.

I would not be surprised if Dynevor were to enter administration soon, just as Dore did.  The only possibility for long term survival would be for further loans, presumably from the shareholders as I doubt banks would consider it a safe investment, in the hope that business improves.  However, unlike Dore, whose owner, Wynford Dore – a multimillionaire, had sufficient personal investment in his business to prop it up for many years, the current shareholders may be more hard headed about cutting their losses.  These shareholders are rather mysterious – the directors of Dyenvor, Scott Quinnell and Glen Allgood, own a small minority of shares (respectively ~3% and ~2.5% of the total), placing the business outside their overall control beyond day to day decisions.  It is not their decision whether or not it survives.

Last time Dore collapsed existing clients were left with substantial losses, they were low down on the list of creditors and Dore made little effort to keep them informed.  Should Dynevor collapse it is likely that clients will be in an even worse situation.  This is because Dynevor is CIC, this means that its assets are ‘locked’ and are not availably should the company be wound up or go into administration, instead they would be transferred to a nominated body, in Dynevor’s case the inactive charity ‘The Dore Foundation’. This would leave Dynevor’s creditors with nothing.

I have previously examined the problems with Dynevor’s application to become a CIC, including unjustified claims of efficacy and the lack of published accounts.  This latter concern, now that we have the accounts, points to a serious problem with the CIC regulator, the official that confers CIC status.  The CIC guidelines state that companies financial situation, especially the Current Ratio (Current Assets/Current Liabilities), should be considered.  As Dynevor’s Current Ratio is ~1 (2 is usually considered healthy) it is possible that had the CIC Regulator seen their accounts their approval would not have been given.  That they granted CIC status without checking Dynevor’s financial situation is a failure, and one that will be costly to Dynevor’s clients should the company go into administration.

The CIC Regulator is supposed to be a ‘light touch regulator’, but the situation with Dynevor suggests neglect rather than a light touch and raises serious concerns about oversight of this entire sector.

The lurking fear in Tredinnick’s Integrated Health Care debate

Last week I mentioned that David Tredinnick, Conservative MP for Bosworth, was being a bit silly in the lead up to his adjournment debate on integrated healthcare.  At the time I boldly suggested that if Tredinnick was the best ally alternative health had in the Houses of Parliament then it was in a great deal of trouble.  Sadly I may have been too confident.  The transcript of the debate is now available and Tredinnick’s contributions are as fanciful as you would expect.  However, it is not these that cause me concern, the man is not a credible figure and his voice carries little wait in tilting the healthcare debate one way or another, it is Anne Milton, the Under Secretary of State for Public Health, whose replies are troubling in many respects.  Readers may be interested in her pronouncements about ‘service providers’, and changes to the structure of NHS healthcare, which suggest some hard questions about their commitment public healthcare need to be asked of the new government.  My focus though, as usual, will be on those replies more pertinent to quackery and its regulation.  While Milton is clear and sensible on the need to defer to NICE and the evidence base, especially in these uncertain economic times where finite NHS resources are already strained and further threatened by the enthusiastic swishing scalpels in the Treasury, there are nevertheless some arguments that offer succour to alternative practitioners.

From her second paragraph:

My hon. Friend may be interested to know that although I trained as a nurse and worked in the NHS for 25 years in conventional medicine, my grandmother trained at the homeopathic hospital in London, and was herself a homeopathic nurse. Later, she became a Christian Scientist. I am therefore not without my own roots in alternative therapies. My hon. Friend may also be interested to know that my grandmother never, until her death at the age of 89, took any conventional medicine.

While this may be an opening gambit of flattery, designed to lessen the rejection of Tredinnick’s ideas, the claim about her grandmother does not seem particularly appropriate.  While good health, of the sort that lets you live until 89, may not require conventional medicine so much as luck, in both genes and environment, it is undeniable that many lives are saved by its use.  To imply by anecdote, not the most reliable of measures, that homeopathy may allow one to live long in the absence of accepted healthcare is unbecoming of a health minister upon whose decisions the health of millions rests. Worryingly the following paragraph suggests the the Minister may indeed have some mistaken opinions about the benefits of an agitated sugar pill.

My hon. Friend raised the issue of homeopathic hospitals and his concern about them. I understand that there are five such hospitals in the United Kingdom, based in London, Bristol, Tunbridge Wells, Liverpool and Glasgow. However, the Tunbridge Wells homeopathic hospital stopped providing services in March 2009 owing to the primary care trust’s decision to end funding. All the hospitals have experienced a reduction in the number of referrals over the past three years, and it has been claimed that all of them are now in a precarious position as a result of such significant funding losses. That is a matter of concern, given that they have clearly offered valuable treatments to patients.

I would like to know the evidence that showed clear benefit from these relics.  It certainly isn’t in the Science and Technology Committee report on homeopathy, which the Minister claims to be considering:

I note my hon. Friend’s comments on the Lords [sic] Science and Technology Committee report on homeopathy, and I am aware that it caused quite a lot of concern. It was published on 22 February, and we are still considering it and will formally respond in due course. He raised considerable concerns about the report, and highlighted the low cost of many alternative therapies and the important contributions they make. He also made reference to experiences from around the world-he mentioned Australia in particular, and also the USA-and he made an important point about the open-mindedness of some countries to alternative therapies.

In considering outcomes, patient-reported outcome measures must be an important factor. As my hon. Friend rightly said-and as I mentioned-individuals’ own experiences are very important, and if we want to achieve the best outcomes, one step we must take is to ask the patient whether they actually got better.

In conclusion, I wish to thank my hon. Friend for his contribution to the debate and to suggest that perhaps the picture is not as bleak as he fears-I noted a certain weariness in his voice; he feels that he has raised this issue on so many occasions and it has fallen on deaf ears.

I do not expect the government to fundamentally disagree with the reports recommendations, that would be a foolish fight to choose given homeopathy’s many vociferous critics, however the comment about patient-reported outcome measures intrigues.  As mentioned in the previous post on Tredinnick, these are the brain child of Boo Armstrong, ex-writer for an AIDS denialist magazine and former Chief Executive of the Prince’s Foundation for Integrated Health (FIH), and a rather curious thing for the Minister to pick up on.  While an inherently weak form of evidence that NICE would not normally consider, they are amenable to misinterpretation by those seeking to attribute what most would consider human bias to unscientific modalities, or magic if you prefer.  One wonders who briefed Anne Milton before this debate and why she considers that alternative therapies are not as threatened as Tredinnick fears?

Perhaps the answer to this lies in the new government’s views on regulation:

The issue of regulation was raised, and it is a thorny one. When I was a shadow Health Minister, I met on numerous occasions psychologists, psychotherapists and counsellors who were very concerned about the regulation of their professions. Across the professions allied to health care, there are those who are keen on regulation and those who feel regulation would be wrong and would be unable to deal with the intricacies of their work. There is no doubt that vulnerable people are often preyed upon by unskilled and unscrupulous practitioners, and I think that professions wanting to achieve the highest standards will welcome proper regulation. The issue for Government is always whether statutory regulation is the most appropriate way of dealing with that risk, or if a lighter-touch approach would be more appropriate. That is why, as I understand it, last year the Department of Health, along with devolved Departments, consulted on the regulation of practitioners of acupuncture, herbal medicine and traditional Chinese medicine. As my hon. Friend will be aware, the consultation closed in November, and more than 6,000 responses were received. The high response rate is a testament to the strength of feeling about public access to complementary and alternative medicines; I am sure I am not alone in having received a huge number of letters on the subject.

The consultation examined in detail the options for regulation, including alternatives to statutory regulation. Once the Government have considered the consultation responses, we will make clear the next steps in the regulatory process. In acknowledgment of my hon. Friend’s keen interest in the matter, I am very happy to keep in touch with him about it. In the meantime, the Complementary and Natural Healthcare Council [CNHC] provides for voluntary registration for practitioners from nine complementary therapy disciplines. I appreciate that my hon. Friend feels that that is not sufficient, but that is in place for the moment while we consider the consultation that has taken place and make a decision on what the next steps should be.

While there is no firm commitment to any particular position here there are two things the Minister needs to consider.

1) ‘light touch’ regulation does not work.

The CNHC have declared that they will ignore complaints from some members of the public, and have been utterly ineffectual in what little concerns they have considered. Not only that they have had to tolerate some outrageous conspiracy theories and false accusations widely circulated by email.

2) Statutory regulation does not work.

Consider the Chiropractors, The General Chiropractic Council (GCC) are supposed to be the statutory body that regulates Chiropractic.  However, since one of the GCC affiliate associations decided to unsuccessfully sue Simon Singh, the profession has found itself under considerable scrutiny, with many of its members subjected to professional standards complaints.  The GCC have been obstructive, inconsistent, dishonest and completely ineffectual in dealing with these.

The regulation of quackery requires some fresh thinking and if the government chooses either of the options above then there will only be chaos from quacks and complaints from skeptics.  Whatever their choice it looks like the eternal battle between reason and woo will continue.  With the collapse of the FIH, quackery is in search of new allies and its former employees may already be making contacts.  As the governments ideologically enthusiastic and economically necessary cuts bite, the temptation to favour cheap placebos may lead many astray.  Anne Milton may not yet have chosen her side, but her lack of commitment is telling, the dark mutterings of the deluded are being listened to if not yet obeyed.

Homeopathic Action Trust still funding unethical trials

As regular readers will know I have been covering the funding of homeopathic AIDS trials by the Homeopathic Action Trust (HAT), the charitable arm of the Society of Homeopaths (SoH), for some time.  HAT have been aware of my coverage and even invited a reader of my blog, Angus Wood, to give a presentation to them about the issues raised by their activity.  The World Health Organisation (WHO) have even criticised these kind of activities.

This did not change anything.  Their latest accounts are now available at the Charity Commission website and it is clear that they are still funding homeopaths who believe that sugar pills can successfully treat AIDS and malaria and are now expanding into India.

Health in Africa project
The charity has been fundraising to meet the requirements of what is now the Tanzanian project. With an annual volume of 12,000 patients in the Natural Therapies Centre, Dar Es Salaam, consultant Mr. Sigsbert Rwegasira, experienced in treating patients with homeopathy, is working closely with the team.

Africa Project
The projects are now undertaking a new series of research initiatives in Africa and India and are also putting in place a low cost clinic education and support structure for Africa, which involves special remedy kits, training manuals and clinical support. We have assured funding for this for the next year and we are also applying to the Gates Foundation for more funding and also the EU.

The Swaziland Homeopathy Project is one of HAT’s initiatives.  In their objectives they very clearly state their intent to perform medical trials on people with an incurable disease who do not have access to appropriate healthcare:

carry out a scientifically verifiable study on the effect of Homeopathy as a treatment for the side effects of the ART

This study, like previous HAT projects, appears to be in breach of the ethical requirements for human trials, not least The Declaration of Helsinki.

The homeopaths at HAT and the SoH are medical fantasists and cargo cult researchers, anybody who thinks they have a role to play in healthcare is very, very wrong.

Sikora & al-Megrahi

The Guardian are reporting today that the British Government regards the release of the Lockerbie bomber, Abdelbaset al-Megrahi, as a ‘mistake’, but a matter for the Scottish Government.  This is consistent with their views in opposition.  Hilary Clinton is also reported as looking into claims by Democrat senators that BP lobbied Libya.  This is politics, the US is rapidly expanding its business ties with Libya and it is incoherent to criticise the release of a terrorist while doing business with the government under whose instruction he acted.  But that is not my interest.  The Guardian state that:

New York Democrat senators Frank Lautenberg, Kirsten Gillibrand and Charles Schumer and New Jersey Democrat senator Robert Menendez called for an inquiry, after reports that a cancer expert, who backed the three-month prognosis, now believed Megrahi could live for 10 or 20 years.

But yesterday, professor Karol Sikora, medical director of CancerPartners UK, said his words were taken out of context, and that the chances of Megrahi surviving for a decade were “less than 1%”.

He said: “There was a greater than 50% chance, in my opinion, that he would die within the first three months then gradually as you go along the chances get less and less.

“So the chances of living 10 years is less than 1%, something like that.”

Sikora was one of the doctors who originally examined Megrahi and claimed last year that his 3 month estimate was made on the request of the Libyans.  This was not the first time Sikora has found himself in trouble.  Imperial College sought legal advice to prevent Sikora from erroneously claiming he was an honorary professor at the instituition.  He was also Dean of  the Faculty of Integrated Medicine until it has its contract terminated by the University of Buckingham, where Sikora is also Dean of the Medical School.  Sikora was also involved with the Prince’s Foundation for Integrated Health, Prince Charles’ pro-quackery charity until it collapsed due to financial fraud.

With respect to the claims above about the chances of living 10 years as being less than 1%, according to Cancer Research UK (CRUK), in England & Wales (Scotland is similar) 10 year survival rates are approximately 70%.  The one year survival rates are close to 90%.  Sikora’s claims appear to be inconsistent with this.

It remains a mystery to me why figures such as Sikora are employed by governments and universities.

*Update*

A commentator has pointed out that al-Megrahi had metastatic prostate cancer with a Gleason score of 9 so the figures I quoted above do not apply.  This is quite correct.  Men with metastatic prostate cancer at the time of diagnosis and with a Gleason score of 9 have a 20% chance of surviving for 10 years for someone of Megrahi’s age.  Sikora is still out by a factor of 20 and my criticism stands.

Just another point, I do not intend to let the comments descend into conspiracy theories and will delete those that persist in posting them.  My focus here is on the public credibility of Sikora, not the wider detail surrounding the Lockerbie bombing or the politics behind the extradition of al-Megrahi.

Paranoia, conspiracies and leaks – are you now, or have you ever been a homeopath?

Sometimes paranoia is rational, sometimes they really are out to get you and sometimes you can prove it.  But in situations like this you should ask yourself what it is you are hiding that you don’t want them to find out?  This seems to be the position homeopaths in the UK now find themselves.  Delusions of big pharma funded conspiracies of doctors ranged against the profession have long been prominent in their thinking, now it seems there may actually be an organised movement against them. The following excerpt is from an email posted to the Minutus mailing list:

Two months ago I accepted a position as research assistant to a London based office.

It has quickly become apparent that their sole remit is to discredit complementary medicine and the current focus is homeopathic education and the London Homeopathic Hospital.

In accordance with a very structured plan a bbc science correspondent has been hired to infiltrate homeopathic education. I am aware that he has been funded to attend a college in east anglia as an apparent homeopathic student. Last month he has been told to find fabricated reasons to move to another college. The college chosen for him to go to next has links to the Royal London Homeopathic hospital and he has been told to gain access to this hospital and to prepare articles to entirely discredit the treatment given there to pave the way for the hospitals closure. The new college chosen to receive this man is the biggest college and therefore when it is discredited and dragged down by this man and his articles the plan is that it will take all homeopathic education down with it.
Incidentally I saw part of his presented report on his present homeopathic college in east anglia and it is scathing of “magic black box sugar pills given to the vulnerable sick and dying”.

My reason for contacting you is that I feel an enormous debt to homeopathy and feel that this is an opportunity for me to give something back to homeopathy itself.

[...]I can only tell you to treat this with utmost care – the funding is very large and the people involved determined.

Now I have no knowledge of this investigation, I cannot confirm the veracity of the claims, it may be a spoof for all I know but the response from the homeopaths is telling.  Remember this is a profession whose educational colleges and degree courses have been ruthlessly exposed as presenting a dangerously misinformed understanding of scientific and medical realities by David Colquhoun.

Karin Mont, Chair of the Alliance of Registered Homeopaths, would prefer that the public’s knowledge of homeopathy is carefully managed:

we need to be extra vigilant in all matters relating to how we communicate with the public.

while Fran Sheffield of the Australian Vaccination Network (AVN) is more critical:

Well, if this is true, and if there really is a college that is preparing standard remedies by radionics, it deserves to bite the dust for leaving the whole profession exposed, let alone the standards it is passing on to its students. There is no way responsible and respectful homeopathy can protect itself if associated with this practice.

And if this does result in a great deal of damage to homeopathy it won’t be the fault of the people involved in the sting but with the sloppy standards and behaviours engaged in by those who will do this because ‘it doesn’t matter’. It is like a decay within our profession.

It’s not so much the radionics that is the problem but the covert way they are used and the rationale (is there any rationale for standard remedies) behind a college that would do this with its students and a trusting public using its clinic. It’s about time this sort of thing did come out in the open and was weeded out.

And these comments are coming from someone who has no problem with radionically prepared remedies as a second best option when traditionally prepared ones are not available – just as long as everyone knows what is being done and the limitations involved.

Radionics is based on a belief that ‘energies’ can be tuned by a machine to remotely confer healing properties to an object or person.  It does not have a scientific basis and does not work.  Presumably this is the ‘magic black box’ referred to in the original email.  Ms Sheffield clearly believes that such a process is less efficacious than banging a sequentially diluted solution, to the point at which no molecule of the original solution survives, 50 times against a leather bound board.

Those friends of homeopathy in high places should be concerned by the attitudes revealed in these responses.  Ms Mont, who leads the second largest professional homeopathic body in the UK, is it seems dedicated to a culture of secrecy that is determined to keep the realities of a homeopathic education out of the public domain.  The apparently more considered views of Ms Sheffield should be seen in the context of her belief that ‘responsible and respectful’ homeopathy is defined as telling the public that vaccines cause autism and homeopathy can protect against the lethal diseases of childhood, from diptheria to whooping cough. Ms Sheffield is more concerned with ideological point scoring, there is ongoing debate with radionics vs succussion in the community, than actually examining the perception of homeopathy in public and its related problems.

However, assuming the veracity of the email, it is not just the behaviour of homeopaths themselves that is concerning, it is that their supporters are prepared to leak information to them and are in a position to do so.  One imagines that conspiracies are undertaken with a relative degree of secrecy, so having them leaked is unfortunate.  I am not bothered about the success or failure of any BBC report, rather that supporters of homeopathy seem to be present in organisations combating alternative medicine, whether mysterious London based offices, or the BBC.  My concerns are not those answerable by McCarthyesque interviews, but that despite all the exposes, scandals and reports into homeopathy it still has supporters willing to risk their jobs for the cause.  It seems the concerted efforts of the 10:23 campaign, bloggers, Ben Goldacre and the Science and Technology Committee have failed to quell the passion some feel for a well shaken sugar pill.
This then raises questions about the best ways to deal with a profession whose beliefs are dangerously wrong.  I have a lot of tolerance for people who hold views at odds with the evidence, I am sure facets of my own thinking could be described in this manner, but it is a problem when practiced by those with responsibility over others.  In the case of homeopaths this is primarily their patients so is a matter for the regulators of the profession.  It will be interesting to see if the new government offer any fresh thinking on this issue, the last government recommended regulation by the CNHC, something that split the homeopathic community.  It will also be fascinating to see if any of the new crop of MPs are avid supporters of homeopathy and are prepared to attempt to water down regulatory options, if they are inclined this way then informing them about the response of homeopaths to investigations will be necessary. Perhaps this will occur through a BBC report, I look forward to finding out.

David Tredinnick in quacks for questions

David Tredinnick, Conservative MP for Bosworth, fulfils a traditional role, required of those who are outliers to the left of the ability curve, in the Westminster Village.  The idiot.  This has enabled him to have a long undistinguished career, previously he was best known for his role in the ‘cash for questions‘ affair, taking a cheque for £1,000 to ask a question in parliament, now his concerns are quacks and their questions.

In an ePolitix article, to promote his adjournment debate on integrated healthcare, Mr Tredinnick presents all the ability and skills that have kept him out of the 3rd reserves for the Conservative front bench.  An ungracious observation about Evan Harris, the former Liberal Democrat MP for Oxford and Abingdon, one of the previous parliaments most rational and respected members is followed by much crowing about the poor performance from one his challengers in Bosworth, the science writer Dr Michael Brooks.  Mr Tredinnick’s reasoning then goes the way of his charm with the following paragraph:

Surveys show that support for a healthcare model that allows doctors to refer to other therapists such as herbalists, acupuncturists, homeopaths and aromatherapists is increasing. The new coalition government seeking to both give more say to doctors and more choice to patients should embrace integrated health care as its model.

This is presumably referring to the infamous Northern Ireland Trial.  This was carried out by a marketing company, hired by a lobby group fronted by Boo Armstrong, who used to write articles for an AIDS denialist magazine and was latterly Chief Executive of the Prince’s Foundation for Integrated Health (FIH), until it fell victim to fraud.

Tredinnick would like the new government to consider this report.  He would also like them to consider regulating alternative therapists through the Health Professionals Council (HPC), rather than the Complementary and Natural Healthcare Council (CNHC).  This is interesting as the CNHC, an offshoot of the disgraced FIH, has been struggling to recruit enough members to survive, and has already been rejected by herbalists and the Society of Homeopaths (SoH), who have previously collaborated with Tredinnick. Is this a move by these alternative elements and their political proxy reflecting a power grab in the alternative healthcare sector?

And what of Boo Armstrong, now that the FIH are disgraced she must be looking for a new job, is she in league with the legions of the dumb?  Is it coincidence that Tredinnick has cited her report?  Time will tell.  However, such an alliance would be a reflection of the fall of alternative medicine in recent years.  The collapse of the chiropractors, thanks to an ill advised libel claim, as well as the damning Select Committee report on homeopathy has put tremendous pressure on this sector.  Once Boo Armstrong and alternative medicine had the ear of Peter Hain, a former government minister of some considerable standing, now they have the ear of David Tredinnick, a minister only in his imagination.

Voting

I have not blogged about the election.  I was going to but other things got in the way and I decided not to.  However, if some really stupid MPs are elected then I will be sure to comment from my usual perspective.

If anyone is interested my voting intention is described on my posterous page.

http://gimpyblog.posterous.com/

Any comment should be left there.

Why am I using posterous and where will you find it on my blog?

I am starting to use posterous as a repository of idle musings that don’t necessarily fit into the quackery obsessed main page of my blog.  With a bit of luck I’ve set up the tubes so that anything I send to posterous is simultaneously posted to a special page on my blog
http://gimpyblog.wordpress.com/posterous-posts/
and to my twitter feed
http://www.twitter.com/gimpyblog

if you care

Back Quacks Whacked, Singh Wins

The British Chiropractic Association have dropped their legal action against Simon Singh.

Many congratulations to Simon Singh and all those who have supported him.  However, Simon is going to be out of pocket by a considerable amount, even though the BCA are apparently liable for his costs.  Simon has succeeded not because he is right, but because he is both right and rich, and this is why we should still support libel reform.  Until libel claims are judged solely by the weight of evidence and not by the balance of wallets libel will remain a tool used primarily by the wealthy to silence criticism.

The fact that it takes hundreds of thousands of pounds and a particular blend of stubborness and stupidity to show that there is not a jot of evidence for the claims of chiropractic, an obvious quackery, is an obvious reason to sign Libel Reform Campaign Petition, so if you have not done so, do it.

Financial irregularities at the FIH?

As well as appointing a Chief Executive who wrote for an AIDS denialist magazine, the Prince’s Foundation for Integrated Health (FIH) have also come under scrutiny for alleged financial irregularities and channeling money from a disgraced politician, Dame Shirley Porter, to fund a commissioned report, the Smallwood Report.  Motivated by this I have examined the accounts for the FIH and some of the various bodies that have funded them, including the Porter Foundation- Dame Porter’s charitable organisation. This has revealed some unusual transactions.

The Smallwood Report was originally to have been funded by the FIH but ended up being directly commissioned by the Prince of Wales who, apparently, wished to remain discrete about the fact that it was funded by Dame Porter.

The 2005 accounts from the Porter Foundation show that £50,000 was given directly to the FIH as a grant, subsequent accounts from the Porter Foundation reveal that this was a one off payment and they did not fund the FIH further.  There is nothing untoward in the Porter Foundation accounts as far as I am aware.  However, there are some strange entries in the accounts for the FIH in this period.

The 2005 accounts for the FIH shows that £48,104 was received as a grant from the Prince’s Charities Foundation, another of the Prince of Wales’ charity organisations, to fund the Smallwood report.  This precise sum is listed in both the incoming and outgoing resource columns for that year, as well as in the incoming grants section, suggesting the money was spent or transferred outside the FIH.  There is no record of the £50,000 from the Porter Foundation in the accounts for this year.

There are also other incidences of discrepancies between the entries for incoming funds, and the accounts of these funders.

In 2004 the Prince’s Charities Foundation donated £447,500 to the FIH, yet the FIH accounts list a donation of £400,000 from this foundation.

In 2005 the Prince’s Charities Foundation donated £525,038 to the FIH, yet the FIH accounts list a donation of £598,014.

This information is taken from the FIH’s 2005 accounts and the 2004/05 accounts of the Prince’s Charities Foundation.

Curiously only the 2005 accounts from the FIH list the specific contributions from the Prince’s Charities Foundation, although the latter’s accounts make clear that they have donated large sums of money to the FIH in the form of grants, as follows:

2004 £447,500

2005 £525,038

2006 £587,604

2007 £528,742

2008 £400,052

2009 £250,000

These grants are roughly split in half each year as restricted and unrestricted funds. Their absence from the accounts maybe because these donations have been included as part of the voluntary income of the FIH, rather than listed as grants.  However, the accounts from all years do list specific grants of Restricted Funds as income, with the exception of 2005, there is no record of donations from the Prince’s Charities Foundation as Restricted Grants in the FIH accounts.  The Prince’s Charities Foundation have given the FIH £2,738,936 over 6 years and there is almost no record of this within the FIH accounts.

In summary;

  1. the FIH have not listed grants from the Porter Foundation, despite this organisation clearly indicating it gave the FIH money
  2. the money spent on the Smallwood report does not match that received from the Porter Foundation
  3. in 2004/05 the sums received from the Prince’s Charities Foundation do not match those listed in the accounts
  4. in all other years there is no record of grants from the Prince’s Charities Foundation, despite the latter donating almost £3million to the FIH

I have asked the FIH to specifically comment on these discrepancies for nearly two weeks.  They have not responded despite repeated requests for comment.  This may be indicative of wider problems at the FIH, they still have not submitted their most recent accounts to the Charities Commission, they now have less than 10 days to submit them before the Charity Commission is obliged to take action.

If, despite reminders, a charity’s accounts and Annual Return or its Annual Update have not been received 4 months after the end of the 10 month period in which they are required to submit the documents, it is a strong indication that they are no longer operating. The charity is notified at this point that if we do not receive their due documents in the following 2 months they may be removed from the Register or subject to further action.

Are the FIH still operating?

The implications of the FIH ceasing to operate would be enormous.  This is not a minor charity run by some incompetent quacks, this a charity whose founder and President is the UK’s future King, the Prince of Wales, and run by some of the most respected and influential advocates of Complementary and Alternative Medicine (CAM) in the country.  The charity helped to set up the Complementary and Natural Healthcare Council (CNHC), a regulatory body for CAM practitioners, as well as being a powerful lobby for the acceptance of CAM.  Without the FIH, the CAM community would find its influence in the elected and unelected of the Houses of Parliament compromised.  There would also be awkward constitutional issues raised, the Prince of Wales and the FIH have already been attacked for a ‘vendetta’ against Professor Edzard Ernst, despite the Prince being required not to involve himself in politics.  If it turns out that the financial discrepancies were part of a larger, very serious, problem then there would be considerable questions over the Prince’s judgement as well as character and his many critics would demand a full investigation.  This could result in the unprecedented investigation of a future monarch as part of a wider investigation into financial fraud.

We should find out the likelihood of this in 10 days.

*update*

The Quackometer has some analysis of the position the FIH finds itself in as well as strong words of condemnation for its actions.

Statement from the Society of Homeopaths on the departure of Paula Ross

The Quackometer has reported the recent departure of the Chief Executive, Paula Ross, from the Society of Homeopaths (SoH), sharing with us some of the more egregious examples of homeopathic conduct during her tenure. These include their inept strategy for dealing with homeopaths who claim their pills can treat or cure malaria as well as a misguided attempt to sue the Quackometer for reporting one of their members claims about malaria. Curiously, although having removed almost every reference to Ross on their website, the SoH have not yet issued a public statement on her departure, which comes just before this weekends AGM.  However, they did release the following statement to their members a few weeks ago:

Following a Board meeting on Friday 9th April, The Society of Homeopaths and its Chief Executive, Paula Ross, have agreed to part company amicably. The Board wishes to extend its thanks to Paula for all the hard work she has put into the Society over the last 7 years, and notes in particular that the Society is in a much healthier financial position than when she arrived.

With the AGM coming up this Saturday, there will be 4 new directors elected. The Board looks forward to the beginning of a new era for The Society, which will look to build on the solid foundations that Paula has laid in so many areas of its work.

The Society also intends to support and build on its long traditions of high standards in homeopathic education, as well as continuing to support the transition to independent accreditation for Course Providers.

The Board is looking forward to working in close harmony with other registering bodies, and all homeopaths and organisations who would wish to see the benefits of homeopathic treatment be made clearer to the public.

The Board wishes to take time to reflect on the best way forward following Paula’s departure, and will be exploring various options as a matter of high priority. Interim arrangements are already in place to ensure the smooth running
of the Society on a day-to-day basis, and all the usual membership services remain fully in place.

The Board also wishes to emphasise at this time its full support for all the staff who are carrying on their splendid work in the smooth running and operations of all aspects of the Society’s work.

Finally the Board wishes to reassure members that it is confident of continuing to deliver great value for money, and is looking to make The Society one in which its members can continue to feel proud as it prepares to deliver a clearer
and stronger homeopathic message to the public. May we all feel we can unite behind that vision.

Diane Goodwin
Zofia Dymitr
Caroline Jurdon
Phil Edmonds
Felicity Lee
Graz Baran

Diane Goodwin RSHom., PCH
Acting Chair
Director

While no reason for the departure of Ross is given, this statement is notably conciliatory on an issue that the SoH has taken a hardline on previously.  In the past the SoH has been keen to spike the regulatory guns of the other registering bodies, particular the ARH, now they call for harmony.  This position is also remarkably different from that expressed in their Annual Report of a few weeks ago, where there is much boasting of their increased market share of registered homeoapths in 2009 and this firm commitment for 2010:

Aim to increase our current market share of 65% of members registered with the 3 largest homeopathic organisations

This remarkable turnaround, correlated with the departure of Paula Ross, could be a sign that the homeopaths have finally realised that the divide and conquer tactics of Paula Ross, not a homeopath but a business woman, offer only short term gains at the expense of the profession as a whole.  Perhaps the SoH believe that no one can do better than the homeopaths themselves when it comes to saving the profession?

Sadly this view would be misguided.  The original article by The Quackometer that the SoH found so objectionable, ‘The Gentle Art of Homeopathic Killing‘, contained this criticism of a homeopathic clinic in Kenya:

The Abha Light Foundation is a registered NGO in Kenya. It takes mobile homeopathy clinics through the slums of Nairobi and surrounding villages. Its stated aim is to,

introduce Homeopathy and natural medicines as a method of managing HIV/AIDS, TB and malaria in Kenya.

I must admit, I had to pause for breath after reading that. The clinic sells its own homeopathic remedies for ‘treating’ various lethal diseases. Its MalariaX potion,

is a homeopathic preparation for prevention of malaria and treatment of malaria. Suitable for children. For prevention. Only 1 pill each week before entering, during and after leaving malaria risk areas. For treatment. Take 1 pill every 1-3 hours during a malaria attack.

This is nothing short of being totally outrageous. It is a murderous delusion. David Colquhoun has been writing about this wicked practice recently and it is well worth following his blog on the issue.

Let’s remind ourselves what one of the most senior and respected homeopaths in the UK, Dr Peter Fisher of the London Homeopathic Hospital, has to say on this matter.

there is absolutely no reason to think that homeopathy works to prevent malaria and you won’t find that in any textbook or journal of homeopathy so people will get malaria, people may even die of malaria if they follow this advice.

Malaria is a huge killer in Kenya. It is the biggest killer of children under five. The problem is so huge that the reintroduction of DDT is considered as a proven way of reducing deaths. Magic sugar pills and water drops will do nothing. Many of the poorest in Kenya cannot afford real anti-malaria medicine, but offering them nonsense as a substitute will not help anyone.

The SoH have consistently supported and funded the use of homeopathy in Africa for years but under the PR savvy leadership of Ross they did not draw much attention to this following the Quackometer’s article.  This may now change.  Didi Ruchira, the director of Abha Light, has recently made the following claims:

in my own correspondence with my UK and USA homeopath colleagues, I’m advised to tread carefully and silently about malaria. The skeptics have them on the run in UK and we had better not shout too much of our successes. A bit odd, but that is the way to fight a battle sometimes.

Please, dear reader, just because UK homeopaths have decided it’s presently strategic to keep silent on Malaria, HIV and TB, doesn’t mean that we in Africa have stopped work in these fields. We are just working quietly, that’s all. This battle will be won ultimately by homeopathy, because drug-based medicine is running out of steam. Those of us working tirelessly on the ground for the benefit of humanity need your support, both morally and financially. I will suggest to you to select your favorite pioneering project in any country in Africa, South America or Asia and support it wholeheartedly.

Without the leadership of Ross it is likely that the membership of the SoH, believing as they do that conventional medicine is a big pharma conspiracy and that homeopathy cures everything, will give more prominence to views such as these.  Views that kill.  It is hard to see how this will be helpful to the reputation of homeopathy in the UK.

Ofquack to regulate herbal medicine?

The attempted regulation of herbalism looks doomed to failure with a clear difference of opinion between government and practitioners, the latter prefer statutory regulation which has been rejected as an option by government.

Last week the Department of Health (DoH) recommended that the Complementary and Natural Healthcare Council (CNHC/Ofquack)  regulate herbal medicine, traditional Chinese medicine (TCM) and acupuncture.  Minister for Health, Andy Burnham, said:

“Emerging evidence clearly demonstrates that the public needs better protection, but in a way that is measured and does not place unreasonable extra burdens on practitioners.

“I am therefore minded to legislate to ensure that all practitioners supplying unlicensed herbal medicines to members of the public in England must be registered with the Complementary and Natural Healthcare Council (CNHC).

The CNHC have expressed their pleasure at this announcement:

CNHC is pleased to be asked by The Secretary of State for Health to register practitioners supplying herbal medicines to members of the public in England.

The Council already registers a significant range of practitioners in complementary healthcare who meet its standards and is well positioned to expand its public protection role in this way. Since 2008 CNHC has established its reputation as a regulatory body with robust and effective standards for registration and fitness to practise. It has positive and collaborative links with the statutory healthcare regulators.

This is probably regarded as good news by the CNHC, they have had a well documented struggle for funding and have trouble attracting some of the more popular forms of quackery.   Regardless of this, the CNHC are not fit for purpose, they have recently told sceptical blogger Simon Perry that they will not consider his complaints for the next 6 months:

I began making complaints to the Complementary and Natural Healthcare Council about reflexologist members who happily promote their bogus treatments despite the fact that there was not a jot of evidence to support them.

The CNHC has now informed me that for the next six months, they will no longer be processing any complaints that are similar to the ones I’ve submitted. By similar, I take this to mean complaints regarding practitioners who mislead their clients by making unjustifiable or false statements, including practitioners who have already been cautioned by the CNHC for doing it before.

The CNHC was set up under the aegis of Prince Charles’ Foundation for Integrated Health (FIH) to be a self-regulatory body for alternative health, now it is one that is not prepared to regulate.  However this is not unexpected.  Organisations purporting to regulate quackery rarely do so beyond upholding the doctrines and articles of faith of the respective field of quackery, managing risks to consumer health are generally not a priority.

It would be a concern for those with an interest in exposing the practices of alternative medicine if the CNHC were to regulate herbal medicine, traditional Chinese medicine and acupuncture.  This, despite the recommendations of Andy Burnham, is unlikely to happen for two reasons.

1) The government is unlikely to exist in its current form within a month or two.  A general election is expected early in May and the Labour party are unlikely to win, if they are to remain in power it will be in a coalition but it is more likely that the next government will be formed from the Conservative party.  None of the major parties have a clearly stated policy on the regulation of alternative medicine, nor is it likely to be a major election issue, so the Department of Health’s current proposals are likely to be mothballed for some considerable time.

2) Herbalists  and TCM practitioners do not want CNHC regulation.

This latter point is the most important.  The European Herbal & Traditional Medicine Practitioners Association (EHTMPA), the Register of Chinese Herbal Medicine (RCHM), the Association of Traditional Chinese Medicine (ATCM), and the National Institute of Medical Herbalists (NIMH) amongst others in the alphabetical smorgasbord that represents the various denominations of herbalism, have all campaigned for statutory regulation.  Their intent was to be regulated by the Health Professionals Council (HPC), a more serious organisation than the CNHC, that regulates practitioners in proven fields of health.  This statutory regulation would confer protected status on their profession, restricting the title of Herbalist to those regulated by its rules.

By and large these organisations are disappointed with the DoH’s announcement:

the CNHC (the proposed regulator) was formed to regulate complementary health practitioners on a voluntary basis, and as currently constituted, is not equipped for statutory regulation.

the government seems to have failed to deliver its promise, and has changed its mind from HPC as our regulatory body to CNHC. We would like to demand an explanation from the government on what ground it has changed its mind, as CNHC is only a voluntary body with no statutory power. From the rather short DH press release which lacks details, we doubt whether the government still wants to introduce statutory regulation, or decides to go for an alternative.

Herbalists should be regulated like other statutory regulated healthcare practitioner or, the public will lose access to properly regulated herbalists and a wide range of herbal medicines. The Government must give detailed assurances that the legal and structural basis of statutory regulation is fit for purpose or it will betray the millions of people who regularly consult herbal practitioners. So far the Government has singularly failed to provide these guarantees.

As the CNHC is voluntary these organisations have no need to insist that their members sign up, in fact as they are holding out for statutory regulation it is unlikely that they will be willing to express any support for the CNHC, to do so would undermine their campaign.  This will damage the CNHC’s longterm viability, no new members means no new funding sources, and with the homeopaths mired in infighting the herbalists represent their last decent chance of acquiring new members in the medium term.

This is good news for those that are concerned about poor practice in alternative medicine.  The collapse of the CNHC will further damage the reputation of alternative medicine.  Hopefully a new government will take stock of the intransigence of the herbalists, the infighting of the homeopaths and the inability of the CNHC to regulate and instead apply a more robust external form of regulation for quackery.

The FIH have appointed a (former?) supporter of AIDS denialism as Chief Executive

The Prince’s Foundation for Integrated Health (FIH) have been in the news recently for all the wrong reasons.  £300,000 has apparently gone missing from their accounts, the police are now investigating, and it is claimed their 2006 Smallwood report was funded by shamed politician, Dame Shirley Porter.  They have now appointed a former writer for an AIDS denialist publication as their new Chief Executive.

According to the Daily Mail report linked to above, the disappearance of £300,000 from the charities accounts is the explanation as to why their most recent financial report has not been filed with the charities commission.  While officially no members of the FIH staff have been suspended there has been a shakeup in the upper echelons of the organisation, with the most notable changes being that former Finance Director and acting Chief Executive, George Gray, is no longer with the charity, having been replaced by a new Chief Executive, Boo Armstrong.  Ms Armstrong used to write articles extolling the virtues of alternative approaches to health in Continuum, a magazine with an editorial position denying the link between HIV and AIDS as described by science.  The FIH have been aware of these articles since at least  the summer of 2009.

Ms Armstrong’s appointment is reflective of how wider society has treated alternative medicine in the past, with minimal scrutiny and an assumption of benefit.  She has been awarded money from UnLtd, the Foundation for Social Entrepreneurs, for pushing alternative medicine and has long been funded by the FIH before she was officially placed on their payroll.  She has also had a position on the National Clinical Audit Advisory Group (NCAAG) for some time, where her profile lauds her charity work.  She was also behind a market research, rather than scientific, project measuring the impact of alternative health in Northern Ireland.  This was instigated by former Northern Ireland Secretary, Peter Hain, who believes that homeopathy and a restrictive diet* cured his son’s eczema and felt that this justified spending £200,000 of taxpayers money on a weak report.  At not point did any of the above investigate her articles for Continuum or even her personal views on various forms of quackery, for example she thinks that osteopaths should be considered equivalent to doctors.

However, more recently, Ms Armstrong and the FIH are becoming unstuck, quite apart from any police investigation.  Thanks to the tenacious David Colquhoun, the recent attempts by an FIH backed organisation to set up an Integrated Medicine course with the University of Buckingham has failed. In particular Ms Armstrong was rejected as a teacher because she was “not qualified to do so academically”.  The FIH have also been reported to the Charities Commission by Republic, a pro-republican pressure group, due to alleged political interference by the Charity and Prince Charles in the appointment of Professor Ernst.

Appointing a supporter of an AIDS denialist magazine as Chief Executive of a charity advocating alternative medicine is not a wise move given the long track record of denialism, unconventional treatment and unethical trials with respect to AIDS in the alternative health movement.  It is especially unwise given that the FIH are no longer operating with minimal scrutiny, both the police and skeptical bloggers, journalists and campaigning organisations taking a close look at them.

The FIH and Ms Armstrong were asked to reply to questions regarding their investigations of the content of Ms Armstrong’s articles and whether Ms Armstrong has retracted her views.  They did not respond.

*specifically a gluten and dairy restricted diet, (there is no indication that Peter Hain’s son was tested by a registered medical practitioner for gluten or dairy allergies).

Improving access to medicines for neurological disorders – World Health Organization (WHO)

Overview

Neurological disorders are the leading cause of disability globally and access to essential medicines for neurological disorders remains a critical global health challenge.

The Improving access to medicines for neurological disorders report comprehensively describes the status of access to medicines for neurological disorders worldwide. Using epilepsy and Parkinson disease as tracer conditions, it highlights the wide unavailability and unaffordability of these medicines, explores the different health system barriers affecting access, and showcases special scenarios where some of the challenges can be exacerbated. The report offers a framework for multi-level, multi-sectoral actions, and serves as a call to action for all stakeholders to commit to tangible, sustainable improvements in the accessibility of medicines for neurological disorders.

The report is intended for use by policy-makers, public health professionals, health programme managers and planners, healthcare insurance authorities, health-care providers, researchers, the pharmaceutical industry, and prescribers working in national health ministries, in subnational health offices, or at the district level, as well as health initiatives led by nongovernmental organizations.

See more here:
Improving access to medicines for neurological disorders - World Health Organization (WHO)

MSU, UM form unprecedented joint venture to grow neurological care in mid-Michigan – Grand Rapids Business Journal

University of Michigan Health and Michigan State University Health Care plan to expand neurological care in the Lansing area and mid-Michigan through a new joint venture.

The two formed the Neuro Care Network to partner on inpatient and outpatient care for patients with neurological diseases such as Parkinsons and dementia or who have suffered a stroke. The partnership includes inpatient and outpatient neurology, neurosurgery, electrodiagnostic and infusion services.

The partnership took effect immediately and marks an unprecedented collaboration between the states two leading academic institutions, University of Michigan President Santa Ono told the Board of Regents, which approved formation of the joint venture Thursday afternoon.

The Neuro Care Network will include practitioners from both institutions to enhance care in the region, Ono said.

Under this new agreement, a dedicated team of neurosurgeons and neurologists will provide world-class care at University of Michigan Health-Sparrow in Lansing and MSU Health Care in East Lansing, Ono said. Together, they will care for more patients, help recruit more neurology specialists to mid-Michigan and, most importantly, transform more lives.

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The partnership will bring a higher level of care in neurology to the mid-Michigan market at a time when incidence rates are rising. The Neuro Care Network will examine future community needs in the market and recruit specialists to mid-Michigan residents, alleviating the need for patients with complex conditions to travel elsewhere for the care they need.

Neurological care and neuroscience care, these are two areas where the diseases and the growth will only be higher, and there will only be more disease rates over time, MSU Health Care CEO Seth Ciabotti said. For us to come together and offer really world-class neurological care, neurological and neurosurgery care for mid-Michigan, and really the state, is something were really excited about. Its something that was lacking, frankly, within mid-Michigan.

On top of the clinical improvements, the partnership can increase clinical research in the region for neurological disease, said Margaret Dimond, president of the University of Michigan Health Regional Network.

Our top research institutions are aligned on expanding our clinical work and seeking more opportunities for research in the neuroscience area, Dimond said. This is a unique and progressive partnership that will set an example for multi-university collaboration on key diagnostic and treatment breakthroughs. It is just the best thing for mid-Michigan in terms of clinical and research for neurological conditions.

MSU Health Care and University of Michigan Health have collaborated for 40 years in a variety of different ways within the neurologic sciences, said Dr. David Kaufman, a professor of neurology and assistant vice president for clinical affairs for the Office of Health Sciences at MSU and medical director of neurology at UM Health-Sparrow.

Weve done this at clinical level research education, but never at this level, Kaufman said. This joint operating agreement helps unite this states top two research intensive universities for the clinical benefit of people within mid-Michigan.

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MSU, UM form unprecedented joint venture to grow neurological care in mid-Michigan - Grand Rapids Business Journal

WHO calls for better access to medicines to reduce vast treatment gap for neurological disorders – World Health Organization (WHO)

Despite the significant progress made in developing effective, safe, and cost-effective medicines that enhance the quality of life of individuals with neurological disorders, these medicines remain largely inaccessible.

A new WHO report, Improving Access to Medicines for Neurological Disorders, sets out the barriers that prevent access to these essential medicines, and presents a framework for action to address these challenges.

The impact of neurological disorders can be significantly decreased and quality of life improved, if people living with these disorders are provided access to the essential medicines they need, says Dvora Kestel, Director or WHOs Department of Mental Health, Brain Health and Substance Use. However, most people with neurological disorders struggle to access the treatment they need for their conditions because these medicines do not reach them or are too expensive.

Neurological disorders are the leading cause of disability and over 80% of neurological deaths and health loss occur in low- and middle-income countries. The treatment gap (the difference between the number of people with a condition and those receiving appropriate treatment) for neurological disorders is extremely high, exceeding 75% in most low-income countries and 50% in most middle-income countries.

Evidence shows that the treatment gap for epilepsy, for example, can reach 90% in low-income countries that means that 9 out of 10 people living with epilepsy do not receive the care and treatment they need.

Barriers to accessing medicines for neurological disorders

Using epilepsy and Parkinson disease as tracer conditions, WHO published a report that sets out the complex and inter-linking challenges that prevent access to treatment for neurological disorders, including:

These challenges are further compounded by existing health inequities, disproportionately affecting populations in low- and middle-income countries, individuals living in poverty, rural areas, and other vulnerable groups, creating a fundamental obstacle to achieving universal health coverage.

WHO report provides a framework for action

The report offers a framework for stakeholders to step up multi-level, multi-sectoral action and address the many barriers impeding sustained access to essential medicines for neurological disorders. The proposed actions address multiple areas across the health system, including policy and regulatory environments, health infrastructure and education systems. The report also emphasizes the importance of engaging with individuals with lived experience and the power of collaboration at country, regional and global levels, as well as among stakeholder groups.

Actions proposed in this report have clear synergies with the WHO Roadmap for access to medicines, vaccines and other health products. With the proposed approach for neurological medicines, we have a robust set of actions and a clear way forward to improve access to these essential medicines, says Christophe Rerat, Senior Technical Officer in the Medicines and Health Products Division, WHO.

Supporting countries to improve access to medicines for neurological disorders

This report is an important tool in the implementation of the Intersectoral global action plan on epilepsy and other neurological disorders (IGAP) 20222031, which is supporting countries to scale up access to the essential medicines and technologies needed to manage neurological disorders by 2031.

Some countries are already taking significant steps to address these challenges. In Ghana, neurological disorders such as epilepsy and Parkinson disease have been prioritized. The recent update of the national essential medicines list and standard treatment guidelines included several medicines and clinical guidance for treatment of neurological disorders.

In the United Republic of Tanzania, a national coordination committee for epilepsy and other neurological disorders is being established to provide technical support to policymakers. The countrys Medical Stores Department is conducting special procurements of medicines for neurological disorders in order to address the lack of access. Significantly, the United Republic of Tanzanias National Health Insurance Fund package 2024, now includes several medicines for neurological disorders, including epilepsy and Parkinson disease. These actions represent a major step towards ensuring more people living with these disorders can access the treatment they need.

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WHO calls for better access to medicines to reduce vast treatment gap for neurological disorders - World Health Organization (WHO)

MSU Health Care, UM Health unite to provide expanded neurology services for mid-Michigan residents – MSUToday

The Neuro Care Network, a new joint operating agreement between MSU Health Care and University of Michigan Health-Sparrow, will offer more convenient local neurological services for an improved patient experience. Effective immediately, the collaborative effort will include inpatient and outpatient neurology, neurosurgery, electrodiagnostic and infusion service lines from both institutions.

MSU Health Care provides neurology services to thousands of local patients each year and we expect that number to continue to grow, said Seth Ciabotti, chief executive officer of MSU Health Care, the academic health system of Michigan State University. The Neuro Care Network enables patients to receive this high level of care as well as additional services. As MSU Health Care continues to build a health system of the future, partnerships like this will help us design experiences that revolve around the needs of patients.

MSU Health Care and University of Michigan Health have a history of working together to provide neurology care to the mid-Michigan community. MSU Health Care providers have supported patients at the MSU Clinical Center and University of Michigan Health-Sparrow, contributing to its designation as a comprehensive stroke center.

The agreement will formalize and advance having University of Michigan Health and Michigan State University neurological specialty providers work collaboratively on a variety of clinical advancements and research potential, said Margaret Dimond, president of UM Health Regional Network, which includes UM Health-Sparrow and UM Health-West. This collaboration will provide access to a more comprehensive and coordinated experience for patients in Michigan who require specialized care for any neurologic condition. Its a unique and progressive partnership that will set an example for multi-university collaboration on key diagnostic and treatment breakthroughs.

According to the National Center for Health Workforce Analysis, Michigans supply of neurology specialists will fulfill just 88% of the demand by 2031, which is below national projections for the same period. The Neuro Care Network will work to identify future community needs and collaboratively recruit specialists so that mid-Michigan residents have convenient access to inpatient and outpatient neurology services.

As our population ages and the rates of neurological diseases such as Parkinsons, stroke and dementia increase, the demand for neurology specialists will continue to outpace the supply, said John Goudreau, neurologist and interim chair of the MSU Department of Neurology and Ophthalmology. Working collaboratively strengthens our position to recruit top neurological talent and care for our patients.

MSU Health Care and UM Health-Sparrow will be partnering to provide outstanding new services, thus expanding access for our mid-Michigan patients to advanced specialty care without needing to leave the region, added Aditya Pandey, chair of the UM Health Department of Neurosurgery.

New service lines are also anticipated as a result of this collaboration and will be announced as they are ready for patients. To learn more, visit the MSU Health Care website.

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MSU Health Care, UM Health unite to provide expanded neurology services for mid-Michigan residents - MSUToday

NYU Langone Health Ranks No. 1 in the Nation for Neurology and Neurosurgery for the Third Consecutive Year – PR Newswire

With nine clinical specialties ranked in the top five nationally, NYU Langone is also No. 1 in New York for cardiology

NEW YORK, July 16, 2024 /PRNewswire/ -- NYU Langone Health has reaffirmed its position as the nation's top hospital for neurology and neurosurgery, securing the No. 1 ranking for the third straight year in U.S. News & World Report'sannual assessment of leading hospitals. NYU Langone also climbed two spots to secure the No. 1 ranking in pulmonology and lung surgery.

Additionally, NYU Langone was recognized as the top hospital in New York for cardiology, heart surgery, and vascular surgery, ranking second nationally.

While U.S. News no longer numerically ranks hospitals, it named NYU Langone to its honor roll of the top 20 hospitals in the nation. The accolades extend across NYU Langone inpatient locations, including Tisch Hospital, Kimmel Pavilion, and NYU Langone Orthopedic Hospital in Manhattan; NYU Langone HospitalLong Island; and NYU Langone HospitalBrooklyn.

"At NYU Langone Health, our culture of exceptionalism continues to deliver the best outcomes for our patients with one consistently high standard of care across all of our locations," saidRobert I. Grossman, MD, CEO of NYU Langone and dean of NYU Grossman School of Medicine. "Not only is our overall ranking one of the highest in the United States, but nine of our specialties are among the top five in the nation. We are unique in that exceptional patient outcomes come from all of our hospitals, with each of these contributing to our ranking.I am so proud of each and every one of our employees for helping deliver these fantastic results."

All 13 of NYU Langone's ranked clinical specialties placed in the top 20 nationally, with nine of those ranking in the top five.

NYU Langone's full clinical rankings:

Also of note, NYU Langone received High Performing ratings for all 20 procedures and conditions included in the Common Adult Procedure and Condition Ratings, underscoring its comprehensive capabilities across various medical specialties. Among them are kidney failure, diabetes, cardiac care, cancer surgery, chronic obstructive pulmonary disease (COPD), leukemia, lymphoma and myeloma, orthopedic surgery, pneumonia, and stroke.

Beyond its recognition by U.S. News & World Report, NYU Langone has consistently earned top marks for quality and safety from other healthcare evaluators. Vizient Inc. named NYU Langone the top inpatient and outpatient network nationwide, the Leapfrog Group awarded an "A" safety rating to every NYU Langone inpatient facility, and the U.S. Centers for Medicare and Medicaid Services bestowed a 5-star rating for safety, quality, and patient experience.

NYU Langone comprises six inpatient locations, its Perlmutter Cancer Center, and more than 300 outpatient sites across the New York area and Florida. The system also includes two medical schools, in Manhattan and on Long Island, and a vast research enterprise.

Media Inquiries

Lacy Scarmana Phone: 646-754-7367 [emailprotected]

SOURCE NYU Langone Health

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NYU Langone Health Ranks No. 1 in the Nation for Neurology and Neurosurgery for the Third Consecutive Year - PR Newswire

Subcutaneous Immunoglobulin Shows Superiority Over IVIG in Treating CIDP, Meta-Analysis Shows – Neurology Live

A recently published meta-analysis using more than 20 studies with nearly 1400 patients showed that subcutaneous immunoglobulin (SCIG) provides a more feasible alternative for treating chronic demyelinating polyneuropathy (CDIP) than intravenous immunoglobulin (IVIG). Overall, SCIG showed more considerable cost reductions over time, was more preferred by patients, and demonstrated comparable, and sometimes superior, health outcomes.1

Published in Neurological Sciences, the systematic review comprised 50 studies up till 2024, with 22 involved in the meta-analysis. Included studies offered clinical data on patients with CIDP, mostly from western Europe and the US, representing nearly 10% of their entire CIDP populations. Almost all studies included considered SCIG to be a maintenance therapy in their context, and thus, the primary goal of those studies was to reduce relapse rate and sustain or enhance neuromuscular functions.

Led by Mostafa Ramzi Shiha, of Cairo University, meta-analysis showed that SCIG significantly improved muscle strength and sensory function, had fewer and milder adverse events (AEs), reduced relapse rates, and received a strong preference. On muscle strength, a collection of 18 studies comprising 542 individuals with CIDP demonstrated a significant improvement in muscle strength post-SCIG treatment. Overall, the pooled standardized mean difference in Medical Research Council Scale (MRC) scores was 0.68 points (95% CI, 0.28-1.08), with statistically significant enhancement (P = .0008).

When evaluating muscle strength by dose level, results showed that the high dose subgroup showed a significant effect (SMD, 2.39; 95% CI, 0.79-3.98) and high heterogeneity (I2 = 95%), whereas there was no significant effect in the low dose subgroup (SMD, 0.05; 95% CI, 0.22 to 0.14). The medium dose subgroup showed a small but not statistically significant effect (SMD, 0.18; 95% CI, 0.04 to 0.40).

Overall, treatment with SCIG was associated with a 22% decreased risk of AEs compared with IVIG (P <.0001). An analysis of 2 studies found a significant difference in headache occurrence in the SCIG group (OR, 0.14; 95% CI, 0.07-0.30; P <.0001). Infusion site reactions, a concern for subcutaneous treatments, were not significantly more common with SCIG in 2 studies, with an OR of 1.75 (P = .50). In addition, there was no significant between-group differences in severe AEs as well (OR, 0.23; P =.19).

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As to why SCIG leads to fewer AEs relative to IVIG, investigators attributed this to the "slower absorption into the bloodstream with SCIG, which avoids the high peak levels of immunoglobulin G seen after IVIG administrations."

The Inflammatory Neuropathy Cause and Treatment (INCAT) disability score, developed in 2001, was used as an assessment for overall function and disability. Across 5 studies with available data comprising 67 patients, treatment with SCIG led to a significant improvement in sensory function as measured by INCAT Sensory Score. The pooled mean difference showed a reduction of 1.73 points (95% CI, 2.29 to 1.17), which was statistically significant (P <.00001). This improvement indicated enhanced sensory function following SCIG therapy.

On INCAT results, there was high heterogeneity (I2 = 92%) among the included studies. "For impaired functional mobility, no worsening was observed in the analysis of 9-hole peg test and timed meter walk test scores, indicating that patients preserved their functional mobility upon SCIG maintenance treatment, Shiha et al wrote.

In terms of relapse rate reduction, patients with CIDP treated with SCIG had significant reductions observed, with a risk ratio of 0.146 (95% CI, 0.090-0.202; P <.001) across 8 included studies. In comparison with conventional IVIG treatment, a previous 52-week open-label study found that IVIG administered as maintenance therapy resulted in a relapse rate of 10.5%, similar to the results of high-dose SCIG treatment in the 48-week, open-label PATH extension trial relapse rate of 10.8%. Overall, the findings from the meta-analysis indicated that both IVIG and SCIG might have comparable efficacy in terms of relapse rates.

Quality of life and health status also remained stable after treatment with SCIG, which was consistent with IVIG treatments. Interestingly, 2 included studies that used a more IgG treatment oriented scale like LQI that considers many items related to patients convenience, comfort, and independence, according to the IgG route of administration, showed better quality of life measures after SCIG. In addition, patients treatment preferences, when analyzed, unanimously demonstrated a preference for SCIG across all studies.

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Neurological conditions claim the lives of thousands of children every year. New treatments in the womb may save them – BBC.com

Cutting-edge therapies delivering treatment to foetuses diagnosed with neurological defects have the potential to change natal care as we know it.

Michelle Johnsons fourth pregnancy was all going according to plan until the specialist giving her the standard 20-week ultrasound stiffened slightly while prodding her belly. The ultrasonographer got "really awkward" and was erratically asking questions, Johnson recalls, like if they already had kids. Several days later, the departments head radiologist called. His tone was sombre as he fumbled for words and said that it was rare in his experience, but Johnson needed to see a gestational foetal medicine specialist immediately because her child had spina bifida.

Known to science as myelomeningocele, spina bifida is when the spinal cord which starts developing in children as a cannoli-shaped tube, folding onto itself to encapsulate the nervous system doesn't fully fuse close. It leaves the superhighway of nerves to spill into a small bulge somewhere along the spine. This nervous system birth defect can lead to lifelong cognitive issues as well as chronically impaired mobility and paralysis from the hips down.

"It was just devastating," says Johnson, who was 35 years old at the time and living in Portland, Oregon, US. "I was just in shock."

Each year around 1,400 babies are born in the US with spina bifida. The exact cause of this complex condition is not known, but it is thought to involve a combination of genetic and environmental factors. Low levels of folic acid intake during pregnancy or certain anti-seizure medications, for example, have been associated with a higher risk of the condition, but it is not clear how great a role these play.

Spina bifida is customarily treated in the 24 to 48 hours immediately following childbirth: surgeons sew up the spinal cord and tuck it back into the baby's body, preventing the condition from degenerating any further. But while making calls for appointments with a specialist, a nurse on the phone told Johnson about a new programme in California that uses stem cells to treat children with spina bifida while they are still in the womb.

If she chose to be involved, her baby would be the second human patient to ever undergo this type of treatment. Johnson knew it was a chance she wanted to give her unborn child.

Since the procedure had to happen before the 26th week of pregnancy, "it was like a race", says Johnson. Several scans, blood tests, and interviews later, she embarked on something larger than life.

Prenatal screening for neurological conditions has progressed in leaps and bounds over the past couple of decades. Technology including genetic analysis, neuroimaging, and high-resolution foetal magnetic resonance imaging (MRI) are allowing doctors to peer into the nervous systems of developing foetuses and already diagnose them earlier and more frequently with any life-altering conditions they'll experience once born. But throughout this advancement, there hasn't been much doctors could do about those diagnoses until the child emerged from the womb. And a significant portion of crucial brain development happens long before a child is born.

Now, a new wave of pioneering in-utero neuroscience therapies are helping to change that. Several seminal trials are underway to test both surgical and medical treatments allowing doctors to reverse conditions in babies before they are born. And the field is "right on the precipice" of a whole new dimension of therapies, says Jeffrey Russ, a pediatric neurologist at Duke University who recently wrote an academic essay describing in-utero treatment as the "next frontier" in neurology.

One of these frontier treatments is the current first Food and Drug Administration (FDA) approved clinical trial treating spina bifida in utero with placental stem cells. The project, known as the CuRe Trial, is the culmination of 25 years of work of foetal surgeon Diana Lee Farmer, from the University of California, Davis.

In-utero operations where the spinal cord opening is sewn shut have become standard care for cases of very severe spina bifida. They slow the degeneration of the disease throughout the pregnancy and improve patient outcomes more than post-birth surgeries, as years of work by Farmer suggest . But her new project aims to take it a step further. By mending the open neural tube with a patch seeded with stem cells from bits of the mother's placenta known as "mesenchymal stromal cells", derived and cultured in a painstakingly precise four-day process the cells should actively go in and reverse the damage that has already occurred by the time of diagnosis.

These stem cells "are very smart", says Aijun Wang, the bioengineer who developed this stem cell technology for the CuRe trial. "They can protect neurons from being killed by the environment."

Preliminary data from running this experiment on lambs with spina bifida suggested the treatment allowed them to prance around without any noticeable disability when they would have otherwise been paralysed in their hind legs. The same was observed when the procedure was performed on bulldogs.

More than 30 people were in the operation room when Johnson, just a day shy of the 26-week pregnancy cutoff, became the second human patient to undergo this surgery. An incision was made into her watermelon-shaped belly, the uterus was pulled almost fully out of the body, and the foetus was floated up to the opening in the uterus. This allowed doctors to reach the hernia on the minuscule baby spine, and delicately apply the stem cell patch. The doctors used special microscopes to perform their surgery because the baby was so small.

If the child a boy to be named Tobias had remained untreated, he would have been born with paralysis from the hips down. On 1 February 2022, he was born via caesarian-section at 7lbs 13oz (3.5kg), legs kicking, toes wriggling. "It just feels like we won the lottery," says Johnson.

Tobias will have to be monitored until he turns 30 months old his last in-person visit is upcoming this summer before officially assessing the full safety and efficacy of the procedure, for the sake of the experiment. And doctors will likely continue to follow him until he turns at least five. At the time of writing, 10 more patients have received CuRe treatment, and Farmer's team has secured $15m (12m) of funding for 29 more patients, with the hopes of enrolling about 10 patients a year. It will not be till 2028 that Farmers team will be able to review all of the data collected and confirm whether this new therapy could become standard for children across the country.

"I'm hopeful that we may be able to make a very significant improvement in the outcome of these kids with spina bifida," says Farmer. "But like every good scientific project, you answer one question and that opens the door to another question."

This is cutting-edge science for anatomic conditions that can be surgically repaired, according to Russ. But another frontier where in-utero therapies have the potential to turn the tables of neurological conditions in newborn babies is where therapies can be delivered at a molecular or genetic level. This is a "totally new concept" that will "open a whole new realm", says Russ.

His colleagues at Duke University contributed to the design of a protocol for the first-ever in-utero treatment for Pompe's disease a rare genetic disease that causes cells to hold onto too many complex sugars, leading to neurological conditions, breathing problems, heart issues, and muscle weakness. Most patients die within one or two years of birth.

Since Pompe's is caused by the lack of an enzyme called acid alpha-glucosidase, it's usually treated with enzyme replacement therapy (ERT), where children receive regular injections of the enzyme. Like with spina bifida, though,data has shown that starting ERT as soon as the baby is born can improve symptoms but it cannot fully stop the disease from manifesting.

So, when doctors at The Ottawa Hospital in Ontario, Canada, ran tests on an unborn girl called Ayla Bashir in February 2021, revealing she had inherited the same genes that led two of her siblings, Zara and Sara, to be diagnosed with Pompe's after birth they knew they had to act quickly. Both Zara and Sara had died aged 29 months and eight months, respectively. But with Ayla's in-utero diagnosis, the medical team could intervene sooner.

On March 24, 2021, doctors delivered the first dose of enzyme replacement to Ayla while she was still in her mother's womb at 24 weeks and five days of gestation. They injected into the umbilical vein a liquid formula containing a copy of the missing enzyme called alglucosidase alfa. This approach allows the manufactured enzyme to make its way into the foetus's bloodstream while it is still developing. It means it barely notices the drug as foreign to itself, and doesn't have the strong immune response that can occur during treatment after birth. Six more infusions every two weeks followed. Ayla was born on June 22, 2021, and ever since she has been getting enzyme injections every week.

"Ayla is a very happy, mobile three year old who is meeting all her neurodevelopmental milestones," says Karen Fung-Kee-Fung, the maternal foetal medicine specialist at The Ottawa Hospital who treated her. "[I] just saw a video of her jumping up and down."

Similarly to Tobias, doctors will continue to follow Ayla for at least five years to monitor any disease progression, as the therapy does not completely prevent irreversible organ damage. But Ayla's story paves the way for setting up prenatal medical treatments that intervene in disorders like these with a simple injection.

"We were hoping to change the paradigm for when you can treat a genetic disease," says Tippi Mackenzie, one of the foetal surgeons at the University of California, San Francisco who led the development of the protocol which was used to treat Ayla.

There are several treatments currently offered to newborns that could potentially be offered during the foetal phase, says Mackenzie. She has established an ongoing five-year clinical trial for a total of 10 patients underway in California to help officially establish in-utero ERT as an approved procedure for Pompe's and other rare diseases such as Neuronopathic Gaucher disease, Mucopolysaccharidosis, and Wolman disease. Two babies with Mucopolysaccharidosis were already treated as part of the trial and "updates are positive", says Mackenzie. They are continuing to enroll patients for the trial, which is open for international patients.

Developing a foetal treatment for conditions like these would also help to raise awareness about the need for more testing for genetic diseases in the first place "changing the equation" by allowing a virtuous cycle of more diagnoses and more treatments, says Mackenzie. "The diagnosis and treatment, I call them a yin and yang, they go together," she says.

And while enzyme replacement is the least invasive type of treatment for genetic disorders and requires multiple dosages throughout a patient's lifetime this new method could be adapted to deliver other hotly debated gene therapies for editing an unborn baby's DNA, by either snipping out a defective gene or replacing a missing one.

Mackenzie's work is "laying the foundation for these types of advanced therapies in the future", says William Peranteau, a professor of surgery at the Children's Hospital of Philadelphia. "If those trials can demonstrate a benefit to treating the diseases before birth with an enzyme replacement therapy, then the obvious next question is a more definitive therapy like in-utero gene editing."

When it comes to estimating how long it'll be until gene-editing therapies will get human trials, though, it's always a very difficult question to answer, and "it always takes longer than we want or expect it to", says Peranteau. Maybe five to 10 years. "It's a matter of just doing the work," he says.

For now, as these trials pick up pace, it'll be imperative to consider the ethical and practical implications of these advancements.

"We'll have to start with really specific examples, where it's very clear that the benefits outweigh the risks," says Russ. Obviously, not all conditions can and should be treated with stem cells, enzyme replacement, and gene-editing technology before birth.

And it's still too early to have a clear picture of the long-term effects of these in-utero treatments. Most of the patients from these in-utero trials are still babies or very young children. We also still don't have long-term data from adult patients who are currently undergoing gene editing therapies, either. So while surgeries and chemical therapies like those developed by Farmer and Mackenzie are mostly short-lived procedures, once doctors edit the genetic code of an unborn baby these changes, and their effects, will be forever.

Crucially, in-utero therapies are unique procedures with double the risks and stakes, since they involve the mother as well as her unborn child, says Russ: "You're not just treating one patient, you're treating two."

Johnsons family travelled back to California a little over a year after the procedure. Johnson got to meet other mothers from the CuRe trial, and the hospital staff all took turns coming by, saying hello, and playing with Tobias in the courtyard, bringing him cake and candles to celebrate his first birthday.

"It was really special," says Johnson. "Really full circle for them to see all the work they're doing and to meet this miracle baby and see how healthy and happy he is."

At the time of writing, Tobias is more than two years old, and he has learned to walk.

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Neurological conditions claim the lives of thousands of children every year. New treatments in the womb may save them - BBC.com