Delays of 2018/21

Some patients didn't / don't have the luxury of time on their side!

Delays to more than a decade of enormous serious efforts on challengers in cancer much more difficult than the sectarian hate games in Northern Ireland or security failures in countering extremist ideology and radicalisation which I was a critic of, or taking 5 minutes to acknowledge errors and missed opportunities... and the value of informal apologies and swift corrective actions,,, But this also involved civil service organisations, infamous for wasting vast resources (and even lives) as opposed to quickly conceding errors and misconduct. Some individuals dug their heals in making it worse.. Some wouldn't communicate when it came to acknowledgment errors, repeatedly passing the destructive mess to an ombudsman whom an initial complaint had been made to but the organization withheld a document with evidence from that ombudsman others were difficult to reach, when I eventually got a direct point of contact

After more than a decade of stressful battles in voluntary efforts on worthy goals and the news in May 2018 that my own mother had a secondary reoccurrence of her cancer, the last thing I needed was additional crippling battles with well resourced civil service organisations tasked with aiding society, while abusing their positions of authority by not quickly conceding they had knowledge of errors, misconduct and missed opportunities. aiding extremely destructive paths and contests.

To put an end years of a highly destructive mess in which self preservation of the parties involved , those with close links to the heart of local terrorism circles and scandalous security failures derailed a decade of devoted voluntary efforts to improve the odds for patients, including by improving ctc tests in evidence based cancer

this and Page last Updated 16:45 01/10/2021

Useful short introduction video's to help interpret some of the actual challenges in cancer

Liquid Biopsies using Circulating Tumour Cells (CTC’s) aka Detached Tumour Cells

Cancer Cells behaving badly

How human stubbornness and stupidity can lead to wasteful delays which can actually cost lives.

Anonymous Feedback Form

Delays of 2018 - 21

Part 1 The necessity to overcome obstacles.

Part 2 The additional ridiculous unnecessary wasteful contest which would tip the balance completely.

Useful short introduction video's to help interpret some of the actual challenges in cancer

Liquid Biopsies using Circulating Tumour Cells (CTC’s) aka Detached Tumour Cells

A presentation explaining the push on the difficult challenge of separating CTC's which occur at cell ratios which of approximately 1:600,000,000 - 1:Billion

The most well known of the first available Liquid Biopsy products is CellSearch, as with the more recent ctDND Liquid Biopsy, tests are still expensive, therefore these imperfect but important advanced tests to build more accurate detail for patients & cancer teams are not widely available.

Cancer Cells behaving badly

A useful presentation using live cells and explaining some of the observable differences.

Note these cells are mostly in the common single flat layer (often referred to as 2D cell culture), used for imaging individual cells. Besides implanting cells in mice which have had their immune systems weakened (Xenografts), other forms of 3D cell culture methods exist, 3d Gel Cultures, Hanging drop Cultures, etc. Each method has its strengths & weaknesses. The special Gel's & cell growth cocktails are often very expensive.

How human stubbornness and stupidity can lead to wasteful delays which can actually cost lives.

First see the useful short introduction video's to help interpret some of the challenges in cancer - Link in page index-

In 2018 Unnecessary Contests (See L1 ) which could have been prevented or limited if some had given moments of time to help, instead having to deal with several unnecessary wasteful contests at once would lead to a collapse in ability to push forward with an urgent ambitious 10 year cancer project pushing for new approaches which could reduce the vast guesswork in cancer " improving the very odds of survival for some patients. and reduce unnecessary suffering for others" Many of which didn't/Don't have the luxury of time!

Some of the things I'd been pushing for:

Bringing an available Liquid Biopsy product "CellSearch" to local cancer care & R&D.
Building Support for Rapid Explore
Clinical practice to catch up with research and support efforts to speed the development of less invasive biopsies (Some detail here)
Support for an unusual way to provide seed funding for the project reducing waste (Something which would also benefit Northern Ireland in other important areas in which progress was also urgent)

Anonymous Feedback Form

Obstacles which derailed more than 10 years of very serious efforts on highly worthy goals

If you have even small details or feedback to help overcome unnecessary obstacles faster. that may be invaluable.

Feel free to contact me directly by the number provided in the contact page. Or if anonymity is preferred please use the Anonymous Feedback Form

The ambitious urgent goals mentioned on my www.hf21.org site are actually important to all of us. Resistance to change especially within Inefficient Social Monopolies lacking motive to drive progress has wasted much valuable time and resources. If you have ideas or information to help overcome obstacles those could be critical to making progress faster. Any help would be greatly appreciated.

This form allows you to submit helpful detail Anonymously.

Thank you in advance!

Delays of 2018 - 21

How waste, human stubbornness and stupidity can lead to delays which cost lives.

Part 1 The necessity to overcome obstacles.

To the left is an example of text messages with a cancer patient from May 2018. Today it looks like that mother is about to lose her fight and leave several young children behind. She's been doing her best in her painful struggle, fighting hard for her very survival. By the time you read this, those children may be without a mother.

With help for an unusual vastly ambitious but "need driven" cancer R&D initiative aiming for better approaches, things just might have been different. Even succeeding in bringing the imperfect but available Liquid Biopsy product "CellSearch" here may have improved the very odds of survival or reduce unnecessary suffering by identifying treatments which weren't working.

Instead unnecessary avoidable wasteful contests of 2018 pushed things over the edge. All when desperately trying to push forward hard with refining and testing prototype procedures and devices, and finding a way to get support

At the time of that text (after 10 years of ambitiously working on technical challenges alongside a very clever bio-med graduate), we knew different paths to improve the odds, or even reduce unnecessary suffering were at least possible for this patient & others. How? by getting support for new approaches to make it simpler and cheaper to pre-test a range of drugs on live samples of both her live cancer cells and normal cells (currently seen as to challenging & expensive)

>> Update, sadly she passed away in mid 2019.

Due to being crushed by the unnecessary contests which would involve those with links to NI's Marxists Nationalist Socialists Terrorists whom i was a critic of, I wasn't in a strong enough position to fight harder for faster progress :( <<

The majority of cancers (damaged/mutated cells) are actually unique with their own set of weaknesses to target, yet today, (due to the expense & technical challenges) looking for targets is still usually limited to Histopathology examining & testing samples of dead tissue obtained from traditional biopsies.

To make progress fast required every ounce of concentration & energy i had to build support & resources for a new ethically driven cancer initiative, bringing Scientists, Engineers & Clinicians together in a unique ethically driven program I refer to as Rapid Explore.

Against astronomical odds by giving everything to a "need driven" endeavour, with limited resources and forced to find simpler ways to solve complex problems, we knew we had several important steps in what we were trying to achieve, but after years focusing on the technical challenges we didn't have the funding and support, or even a marketing department. From the start this has been about delivering low-cost methods and devices, therefore traditional style partnerships with universities or the biotech industry were out. Why? while I don't wish to feed the common simplistic cancer conspiracies, In practice despite the press releases on cancer, with so much focus on the lucrative world of biotech, the mention of ethics, open source R&D & low-cost end products by eccentric passionate outsiders critical of conflicts of interest (and excessive management salaries in social causes) was always going to collide with those in monopoly positions (often paying themselves excessive salaries)

As a result I'd long been searching paths to provide seed funding, including setting up a platform to hunt for waste in everything from conflict to civil service spending, that was ambitious in itself. But I had a path planned and was rushing towards that. progress would be fraught with obstacles, we'd have to be careful even sharing details of our prototypes and designs, we had an experience when something almost identical to an earlier version of one of our cell culture discs had turned up in research journals published by a local University. Early prototypes require refinement, if those with the resources where to patent just one of the key components, it could put an end to our decade of efforts, and the aim of bringing scientists and Engineers together in a new dynamic team formats, and a new model for social cause (See CHESS) to help refine and deliver high quality low-cost test kits and equipment. There are a lot of poorly performing cancer products out there . Not only Cancer drugs, but everything from bio-markers to test equipment, which are underdeveloped yet excessively priced.

Those wasteful unnecessary obstacles of 2018 came at a very high price in more ways than one.

When I challenged some of those getting in the way, things just got worse, and I got worn down even further, so through necessity and the lack of apologies I may be sharing digital evidence to outline some of those ridiculous unnecessary struggles in the way of progress. See Progress Tools

Part 2 The additional ridiculous unnecessary wasteful contest which would tip the balance completely.

A story which under my unique circumstances I resent having to take the time to detail . or post evidence to confirm the attributes which made the lack of fast informal acknowledgment of errors, missed opportunities and misconduct so destructive ,and even dangerous.

Draft

Current Civil Service organisations management formats lacking competition to drive customer services, micro management and real-time customer feedback to maintain standards and keep processes and staff in check are often a disaster. As repeatedly demonstrated in media scandals they'll waste vast resources and even lives before informally conceding errors and misconduct. the repetition of common failures also indicates issues with even basic processes essential for learning from mistakes.

Chapters and evidence in the enormous struggles and extremely destructive obstacles

Events

December 2015

2016 Extracts/Evidence from correspondences to civil service staff and managers who wouldn't take moments to help by informally conceding errors , misconduct and missed opportunities never mind putting any efforts in to corrective actions. Digging their heels in further for self preservation, no matter what the costs to resources and lives..

Requests

May 2018 Request for urgent assistance before the date of surgery for a secondary recurrence of cancer, and an infuriating response offering a meeting after the date of Surgery

June 1st 2018

June 5th 2018

June 7th 2018

2018 Extracts/Evidence from correspondences to civil service staff and managers who wouldn't take moments to help by informally conceding errors , misconduct and missed opportunities never mind putting any efforts in to corrective actions. Digging their heels in further for self preservation, no matter what the costs to resources and lives..

2019 Extracts/Evidence from correspondences to civil service staff and managers who wouldn't take moments to help by informally conceding errors , misconduct and missed opportunities never mind putting any efforts in to corrective actions. Digging their heels in further for self preservation, no matter what the costs to resources and lives..

2020 Extracts/Evidence from correspondences to civil service staff and managers who wouldn't take moments to help by informally conceding errors , misconduct and missed opportunities never mind putting any efforts in to corrective actions. Digging their heels in further for self preservation, no matter what the costs to resources and lives..

2021 Extracts/Evidence from correspondences to civil service staff and managers who wouldn't take moments to help by informally conceding errors , misconduct and missed opportunities never mind putting any efforts in to corrective actions. Digging their heels in further for self preservation, no matter what the costs to resources and lives..

On the 1st of May 2021

While trapped in a mess which could have been elevated if those in positions of authority had conceded a string of serious errors misconduct and missed opportunities had allocated appropriate single points of contact.

Few things can cause as much stress as when the very well resourced agency's paid to protect become a big part of the problem , not only refusing to quickly establish approximate single points of contact for communication informally acknowledge errors, concede

Without better mechanisms for micromanagement in civil service organisations, valuable opportunities are often missed.

I know of several cases in which civil service personnel 'police & health service' involving serious errors & misconduct.

The victims of which needed urgent informal apologies & corrective actions. As opposed to stressful contests involving an ombudsman.

Another very personal one

The image to the right is of my mother's recent surgery for another reoccurrence of her cancer

After previous mistakes in care services 'lacking fast, informal, active feedback systems to quickly detect where things go wrong'

She'd been given surgery to the wrong area!

Mistakes happen even in the best of systems.

My mother is not the type of person to hound someone or the NHS for a mistake

There was no attempt to informally acknowledge the error to restore confidence 'after previous errors'

Lack of confidence adds to cancer patient stress.

While Battling to gain light at the end of the tunnel to help regain my ability to concentrate after years of unnecessary highly destructive and even dangerous situations (which resulted in prolonged distress and a cascade of highly destructive secondary impacts.

I'd learnt of an old friend trapped in battles in which civil service organizations could have been resolved by quickly appointing single appropriate points of contact, They didn't! (I'd been shocked to see the transformation in her) in her struggles, eventually after years received acknowledgement of errors from an ombudsman's office and an apology. In her case the damage was done. she'd jumped out of a window breaking her back.

In my case the prolonged stress and the cascade of highly destructive secondary impacts included (after one battle) having to attend A&E thinking I was having a heart attack.