Thursday, July 18, 2019

Tafida Raqeeb is the latest case of a UK child being denied treatment abroad.

By Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Tafida Raqeeb has been diagnosed with arteriovenous malformation, a rare condition which causes the blood vessels to have abnormal connections between the arteries and veins.

Tafida Raqeeb
Tafida had a brain bleed on February 9 that has left her in coma in the Royal London Hospital where the doctors claim that there is no hope.

Doctors in Genoa, Italy state that they have an expertise in this condition, they are willing to treat Tafida, and “they suggest there is a good chance she will emerge from the coma she is in,” according to Ron Liddle of The Sun (a UK newspaper). But the Royal London Hospital is refusing to let the parents take Tafida to Genoa.

“The view of the doctors there is that they can do nothing more for her and that it would be better for her to be ­left to die,” Liddle writes.

Sign the citizengo petition to let Tafida go and get the care that she needs. (Link).

Some people have compared this case to Charlie Gard whose parents founght unsuccessfully to move him to an American hospital for experimental treatment.

Liddle argues that the decision by the Royal London Hospital is grotesque, arrogant and pig-headed. He states:

I can understand doctors telling Mohammed and Shelina [the parents] there is nothing more that they can do for their little girl. What is beyond belief — beyond ­imagination — is that they would insist on keeping the child there to die when there is genuine hope she might be cured.

It is all terribly similar to the case of Ashya King, an eight-year-old lad who had a brain tumour and was being treated at a hospital in Southampton.

The treatment he was receiving, his parents feared, threatened to cause grave brain damage and they instead wanted him to be treated via proton therapy in Prague.

The hospital said: “No, he stays here.” And so the parents, Brett and Naghemeh King, were forced to abduct the lad, sparking a Europe-wide manhunt. They were arrested in Spain . . . where Ashya also received treatment.

Five years later, he is cured. Free from cancer. No brain damage. The parents were right. The doctors were horribly wrong. Our medical professionals are, by and large, brilliant. But there is sometimes a grotesque arrogance and pigheadedness about them.
I am not a medical expert, but I do know that if there is hope for Tafida, that the longer they wait to treat her, the less likely there will be a good outcome.

Sign the citizengo petition to let Tafida go and get the care that she needs. (Link).


Morten Andreas Horn said...

Thanks for bringing to attention these two cases, I was unaware of them. However, I'm confused regarding the description of the Ashya King case. It would seem that the NHS hospital denied treatment abroad for Ashya, so the parents had to "abduct" to get him to Prague.

However, in one of the Sun articles, the hospital disputes that version:
Here it says that the hospital was in the process of transferring Aysha to Prague, when the parents took him.
I don't know the truth - but why should the NHS lie about this?

I'm a medical professional working in the public hospital sector in Norway, a social democracy like the UK. Sure, our doctors make mistakes, and sometimes try to cover them up. But generally, transparency and reporting requirements prevail. There are no money to be gained nor lost in the public sector, there are scant incentives to lying or cheating for those involved.

Although I have to say things have worsened after the introduction of "New Public Management". Anyway, I'm surprised this issue is still unresolved - in such a case, there ought to have been an inquiry, papers turned over to the authorities, and the questions answered.

In general, there is little reason for professionals to resist treatment that may benefit patients - provided it is likely to be efficacious. In almost all publically reknowned cases of this kind that I have followed over 25 years in Norway, the reason for such resistance has been a medical judgment that the treatment wouldn't be of benefit; in most cases, this is decried as though doctors "don't want" to help the patient, in most cases, the treatment achieved in this way turns out not helping. And in the vast majority of such cases, patients who have fought publicly and won the right to treatment, and it fails, stay mum about the failure, reject admitting publicly that the doctors were right after all.

Really - doctors do make mistakes, all the time. But thankfully, expertise makes us err less, particularly when we employ our networks and consult with colleagues. It also helps not being paid for the care you provide; less incentives to burdensome, futile overtreatment.

If I were able to save a boy's life by sending him to Prague for proton therapy, I would become a hero among my colleagues. According to the hospital, that's what they did, too. Why NOT believe them?

Kind regards,
Morten Horn, MD, PhD
Consultant in neurology
Member of the Medical ethics Council, Norwegian Medical Association

Unknown said...

I find it highly unlikely the parents would abduct their own child because the child was going to recieve the treatment the parents desired. I find it more credible that the hospital likely recieves more govt funds for tragic cases, especially those in which the patient lingers. I believe the parents well before I would believe hospital bureaucrats.

Unknown said...

I think the problem here is the wish of the medical team to avoid causing unnecessary suffering to a patient who they feel has no realistic prospect of cure.
The problem becomes very difficult in the case of infants because most parents will want to think about all options for treatment even those which are unrealistic from the medical team's point of view.
As far as I can recall, and according to the news media reports at the time, in the case of Ashya King, relations between the parents and the medical team broke down and the hospital applied for a 'Court Injunction' to protect Ashya from the over-zealous and unrealistic attempts (as they saw it) of his parents to find effective treatment for him.
The parents then removed him from the hospital and took him abroad. This broke the court injunction and thus technically, Ashya was kidnapped by his parents and there was an international police hunt for the child.
Happily, Ashya received treatment which proved to be effective and that stands as a rebuke to the original clinical team and hospital management people.
Writing as a retired hospital clinician, I can say from my own experience that it is very important to avoid a breakdown in relationship between parents, patients and clinicians but on the other hand, some clinicians can be very insensitive and heavy handed when they should be more humble and patient - so patients and their supporters need to retain agency.

Paul Anderson said...

I would like to hear the rationale behind this business of not allowing patients whose condition is deemed "hopeless" to leave the hospital. It seems self contradictory. On the one hand, the hospital declares that it cannot help the patient; on the other, it insists that patient must remain in its "care".

Anonymous said...

Awful situation BUT people including children get sick and develop conditions which cannot be treated.

These stories are always emotive and completely unbalanced. The family break the child's right to confidentiality and present a case to the media that is far from accurate - just watch the video they have put on youtube... The medical team maintain the child's confidentiality but cannot defend themselves from public/media scrutiny.

The medical teams in Italy watched a video! This does not count as a formal medical evaluation and they clearly have their own agenda.

The parents CANNOT and SHOULD NOT have the right to take a child to another hospital if it is deemed futile by the medical team and the many second opinions sought in these cases. The judge will inevitably rule in favour of the medical team.

Alex Schadenberg said...

These aren't easy situations but you didn't answer the key question. Who's child is this, the child of the state? the child of the hospital? or the child of the parents? If the parents don't mean harm, let the child go.

Further to that, doctors are not gods, they are humans with their own judgments. Every time doctors impose themselves on others, like this case, they lose credibility in the eyes of the public.

Lipizzan horse lover said...

I totally agree with Alex. The parents HAVE THE RIGHT to take the child to whichever hospital they think is best. If the medical team thinks it is futile, then they have nothing to lose by letting the child go. Doctors ARE NOT God. If Italy offers an option then the parents should be allowed to take it. What do the parents or the child have to lose anyway? The child will die? Well, according to the current hospital she is dying anyway.

People should have the right to chose where they are going to be treated and should be able to get 2nd and 3rd opinions if they don't agree with the diagnosis. There are numerous cases where one doctor has not found anything wrong with a person and another has. Patients can no longer believe in just one doctors' comments if they feel something is wrong and the doctor won't listen.

I had a former doctor who said I did not have pneumonia - I suffer from asthma. I knew something else was wrong, having lived in this body for many years with asthma. I went to a specialist and got the treatment that I needed. I had to use her almost as my family doctor to get the proper treatment because the doctor acted like he was God and would not listen to me.

My husband injured his back and was told by a doctor (who was covering while our normal doctor was away) that he did not have a disk problem and did not need an MRI. We went to the US and paid for an MRI ourselves. Guess what, my husband DOES have a 9mm protrusion of a disk pushing on a nerve. Thankfully that covering doctor is not our normal family doctor; ours is really fantastic and keeps up to date with developments in medicine; he is also willing to listen to the patient.

I am a survivor of ovarian cancer. My doctor at the time was great and helped save my life because she listened and sent me for tests. However, I met a number of women in the hospital when I was being treated who had the cancer spread to other organs and they told me "If my doctor had only listened to me I would not be in this state".

Medicine is changing so fast, and your treatment is really dependent on how much your doctor keeps up to date with developments.

My main beef with the hospital in the situation of the little girl is not that they feel they cannot do anything further, but the fact that they won't let the parent's seek treatment elsewhere. It is the arrogance of doctors that I object to.

I think some of the refusal to let the child go is because of MAD (not Maid - it is madness!) - at one time the medical profession felt that an individual life was valuable and would try everything to save someone. All over the world, experimental treatments are being developed. Patients should be allowed to go elsewhere, especially if they are dying anyway - they just might end up living!