By Rob Verkerk PhD, executive and scientific director

As a legal deadline set by the High Court in London passes today, a mother and daughter, supported by a family friend crossed the Polish-German border in a hire car. They are heading for a specialist paediatric clinic in Germany that will assess the status of the cancer in the body of the youngest passenger.

The mother is frantically making calls to lawyers in Poland and the UK trying to make sure everyone who needs to be is informed about what she is doing and why she chose to not be back in the UK by the Court’s deadline.

The mother, Lena (not her real name), is taking the greatest risk of her life. All because she passionately believes she is acting in the best interests of her four-and-a-half year-old daughter, Josie (also not her real name).

A High Court order, served following a private hearing last week, spells out loud and clear that Josie must be back in the UK by midday today. Her passport must be surrendered to the UK hospital that administered the first few rounds of chemotherapy. Assuming Lena was to travel with her daughter, she must also surrender her own passport. Josie would then not be allowed to leave the UK unless the Court was to rule later that this was possible. Josie’s address in the UK is required to be disclosed after their arrival. Lena has been given no right of appeal and has lost any right over the choice of her daughter’s treatment. Only the Court has the power to change its mind over what it thinks is best for Josie.

Any plans that Lena might have had to continue what appeared like promising natural or integrated therapies in Germany, that she started shortly after Josie was forced to take a break from the savage chemotherapy regime being administered in London, were seemingly shattered by the Court’s order. But Lena simply couldn’t bear to bring her child back to the UK, being desperate to put her most precious possession — her daughter — in the hands of those she could trust.

The choice

Lena has missed the deadline today in full knowledge that if she was to disobey any of the key orders she would be guilty of contempt of court. The Court’s notice makes no bones that the consequences may be fines, imprisonment or seizure of her assets. For Lena, the choice itself wasn’t difficult. Complying with the Court would mean certainty of more chemo for her daughter that she feared would kill her, given how Josie responded to the first 3 rounds. She is well aware of the statistics that show her daughter’s chances of survival with conventional cancer treatments would not exceed 50%. Lena and Josie would be stuck in the UK, unable to travel. Any options of visiting clinics with less harsh, or more integrated or innovative immunotherapeutic treatments would be shattered. Lena and Josie, as Polish citizens, would be trapped in the UK, losing their fundamental right to freedom of movement. Lena simply couldn’t cope seeing her daughter succumb to chemotherapy poisons.

Lena has no further reason to be in the UK and, in the hope that Josie’ neuroblastoma can be managed, wants to return to live permanently in Poland, to look after her ailing father and one-year-old sister, as well as Josie of course.

neuroblastoma
The devastating conclusion of the CT scan report that first pointed to the presence of high-risk neuroblastoma in May 2016

About Josie

Josie’s first four years of life were typical for any kid blessed with abundant health and vigour. She was living in London with her mum and her Brazilian Dad. When she was three, her Dad left home. He went back to Brazil and they lost contact. This was OK for Josie because she and Lena were very close, and Lena’s sister also lived nearby.

Josie then started suffering pain in her pelvis that was bad enough to make her limp when she walked. She’d sometimes get shooting pains in her arms and legs at night, was also running a bit of fever and would sometimes become short of breath.

Lena took her daughter to hospital in early May not long after the symptoms appeared. The doctors first thought it was an infection in the bone (osteomyelitis). Unsurprisingly, Josie was put on high-dose antibiotics. But after further tests and scans, calcified masses were identified, pointing to neuroblastoma. It wasn’t long before a firm diagnosis was made of high-risk, Stage IV neuroblastoma following biopsy. Neuroblastoma is one of the most common childhood cancers, with around 100 new cases being diagnosed every year in the UK and some 700 in the USA. It’s a condition in which malignant (cancer) cells develop in specialised nerve cells, especially in the adrenal gland, neck, chest or spinal cord. Malignancies can then spread to lymph nodes and other parts of the body.  Many cases are likely to be mediated by particular genetic mutations that may be inherited from the parents or non-inherited.

After Josie’s diagnosis, she was transferred to Great Ormond Street Hospital (GOSH), the largest paediatric hospital in the UK. After 3 out of the 8 prescribed rounds of high-dose chemotherapy, Josie’s white cells were on the floor and she became severely ill. The consultants in charge decided it was appropriate to take a short break from the chemo regime. Lena, who’d recently seen her own mother succumb to cancer and chemo was adamant that there had to be another way.

During the break, she took her daughter to Germany and found a doctor, originally trained as an anaesthetist, who specialised in immune support protocols that worked with the body’s immune system, rather than challenged it. Josie appeared to be making great progress — and then it became apparent that GOSH was chasing her down. When the hospital discovered Josie was being subject to non-standard and natural treatments, it demanded Lena bring her daughter back to resume her chemo. Lena resisted this idea, so the London hospital went legal on her.

Balancing health and freedom

It was at this point that Lena made contact with us, through our strategic partners at the integrated cancer charity, Yes to Life.

It isn’t possible for us to provide much in the way of detail of what has transpired since, given the risk of being in contempt of court and restrictions under section 97 of Children’s Act of 1989 that means “no person shall publish any material which is intended or likely to identify [Josie] as being involved in these proceedings.”

At some level, it’s abundantly clear that Josie’s mother, the High Court in London and the doctors and nurses at GOSH are all trying to act in the best interests of Josie. What is glaringly apparent, however, is that the child’s mother has effectively had her right of choice over the treatment for her daughter removed by the judicial system that has sided firmly with the ‘cancer establishment’ that now has control of the treatment. It is precisely this intent that has been at the heart of the UK cancer establishment’s zeal since the passage of the Cancer Act of 1939.

It is also apparent that the mother’s confidence in the conventional chemotherapy regime is very low, in part because communications between the consultants responsible for Josie’s care and Josie’s mother have been grossly inadequate.

Possibly even more alarming is the assumption, cited in GOSH’s case in the Court, that the treatments to which Josie appeared to be responding positively to in Germany “may be dangerous”.  Astonishingly, or perhaps predictably, this view was provided to the Court with almost no information about the treatments.

Yesterday we have managed to get agreement in principle from a leading US integrative cancer treatment centre in the US which specialises in neuroblastoma to take on Josie’s treatment. It remains to be see if Lena and Josie’s travel to the US will be obstructed and whether they can get visas.

We will continue working to the best of our ability to try to support Lena in her struggle to find the best possible care for Josie. There is no evidence of neglect or negligence on the part of Lena. Like any good parent, she simply wants the best for her beloved child, and she is prepared to fight to maintain that right, risking being sent to prison in the process.

As soon as we are able, we will bring you further news of this titanic struggle between a mother, her seriously ill daughter, the Courts and the cancer establishment.

Sunflower_AV
Photo by Anneke Verkerk (age 11) and dedicated to [Josie]

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Comments

  1. All too reminescent of Ashya King’s case. Good luck with your efforts in securing treatment in the U.S. Hoping Lena finds the courage and resourcefulness to continue her battle.

  2. This is a heartbreaking story and I have heard similar ones before.

    I think it outrageous that this obviously loving mother is unable to choose the treatment she undoubtedly believes in for her daughter.

    My thoughts and prayers are with them both.

  3. What you describe here, Robert, is such an unforgiveable assault commited by the legal and the medical systems in England against this family, that it makes me furious. What is so terrible is that exactly the same thing happens in many countries, all the time. People all over the world must come together and forbid such crimes against humanity. It is enough now, we do not want all those psychopaths to tell us what to do and how to live our lives.

    By the way, I think you are great, Robert, and that goes for your ANH colleagues as well.

    1. Many thank for the kind words. This is a classic case where the ‘Doctor as God’, the Cancer Establishment and the judicial system are out of control. The first step is to ensure [Josie] gets the best care possible, after this it might serve as a precedent to make change – assuming sufficient grassroots support.

    1. Sadly control by the Cancer Establishment has been rife in the UK since the passage of the Cancer Act 1939. The GOSH oncologists almost certainly wholeheartedly believe they are abiding by the Hippocratic Oath as far as it’s possible – it’s just that they believe they need to almost kill a child with chemo to help them survive high-risk neuroblastoma. It’s often much harder for the gargantuan NHS to be at the leading edge of therapeutics (natural or otherwise) – which is why this mother wants her child treated at an integrated centre in the USA

  4. Not at all surprising to the better informed. Maybe the Editors/moderators here will allow this comment to be published, having censored most of my input to date!!

    Here’s a fuller cancer story.. that shows how Cancer Inc. ensures their 1/3T$ annual Industry doesn’t get knocked over with cures and prevention.

    ‘Integrative Medicine’ is also a bit of a cop-out, (or just another branch of Cancer Inc), (?), as they often use chemo, surgery and radiation then show compassion by attempting to ameliorate the side effects with herbs, vitamins , amino acids etc.

    http://tthairsolutions.com/11-why-do-most-lose-their-battle-against-cancer/

  5. When the rights of parents are interfered with by authorities, it becomes a dangerous situation. Where are the rights of parents considered in this horrific intervention. The mother knows her child best, and her rights should be respected. Respect for alternative treatments for cancer should be acknowledged. All power to this mother who is risking so much for her daughter’s well-being, and I pray that this German clinic can help her. Chemotherapy is a treatment which puts money in the coffers of biotechnology companies, and hospitals, and doctors/oncologists. It has become a huge industry which is being protected at the expense of cancer sufferers.

    1. When it comes to childhood cancers in the UK, the mother has no rights if she disagrees with standard (NICE guidelines) treatments. This is happening to a Polish mother and daughter because the daughter had been “habitually resident” in the UK since birth, even though the mother wants to leave the UK permanently. Amazingly, in this case, the High Court has tried to extend its effective jurisdiction well beyond the UK.

  6. What has happened to ‘PATIENT CHOICE’ that is supposedly actively supported in the UK. We can choose where we see Consultants, have treatments etc; but ultimately it seems we cannot choose alternative therapies over conventional therapies. I believe this is because our Government can’t make money from alternative options like it can through pharmaceutical company profits. I send prayers of courage and hope to Lena and Josie.

    1. The parent, of course, is not the patient. UK law says a child facing life-threatening illness is too young to make informed choices and if the parent wants a choice that is not supported by the medical establishment, the State will effectively assume control of the child’s healthcare, doing it in the way it thinks, guided by the medical establishment, is in the child’s best interest.

  7. My best wishes go out to this brave mother and her child. If she were to die, the mother would be blamed and could be charged for ‘killing’ her child. Whereas if the child returned to the UK, completed chemotherapy and subsequently died, the oncologists would never be charged and their lives would continue as normal.
    Robert and ANH, thank you for helping her and bringing this to our attention.

  8. Disgusting. Assume that the mother had a ton of money and wanted to use a prestigeous establishment clinic in Switzerland/Germany/US instead. Would the NHS still put up a prestige fight? Probably not. Remember, the UK has one of the worst cancer survival statistics in the EU.

    If I was in the same situaiton I would lie through my teeth. I would pretend I had money and that wanted to seek a second and third opinion from other establishment cancer clinics. I would requst all records and test results.I would intimidate my doctors and find some procedures and tests they didn’t do (or not part of the NHS standard toolkit) and criticise them for incompetence.

    Then I would threaten them with a malpractice suit and just remove my child from their “care” and take her elsewhere.

  9. The sooner the UK embrace Integrative treatments the better. The stress the mother must be going through, she must be admired for standing by her beliefs regardless of what the courts could impose. I hope she can remain outside the UK courts jurisdiction.

  10. There was a similar story is Australia that was eventually told in a book “Sarah’s Last Wish” by Eve Hillary. “Sarah’s” story was heartbreaking with a tragic ending. Maybe the UK medics and courts should read this and learn from past mistakes. I can only Hope and Pray that Lena and Josie have a positive outcome in their fight against this disease and the establishment.
    It astonishes me that in western society we are encouraged to practice Religious, cultural and racial tolerance, in fact tolerance (even celebration) for all the diversity in life – BUT when it comes to your health care and choice of treatment there is virtually NO tolerance or legal acceptance for anything but western drugs or surgery.
    If they really did have the best interest of this child and her family at the forefront then instead of wasting public “health” dollars on courts and barristers, why not send a competent health professional (who understands biology and biochemistry) to ASSIST the family in navigating their CHOICE of treatment. Maybe they could even learn something from the integrative practitioners in Germany or the USA. It’s not as if the the Medical Establishment in the UK can give the family any Guarantees (in fact their recommended treatment was causing Josie’s health to suffer) – so why not support the family’s considered and well-researched choices in what they BELIEVE is their best option for their daughter’s recovery. Studies almost consistently show the “placebo” is one the the best “medicines” available – which is generally attributed to the power of the human mind so why not stack the odds in their favour by supporting them not fighting them.

  11. Hi Dr Robert,
    I have to thank you for what you’re doing.
    I’m studying to become a naturopath and I do believe in natural approach.
    What’s sad, is seeing the system been take by the Big Pharma.
    We need more people like you guys and I believe, that we will make it.
    It’s the parental rights that must be preserved, specially this brave mother, that is going thru a hard moment, but never give up of her child.
    Bless you all and yes you will make it, Josie and Lena ?

    Claudio Conde

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