Wednesday, September 29, 2010

Schokkend Verhaal Over Stamcel Behandeling

Er is een vreselijk verhaal vandaag in het nieuws in Engeland, over een arts die patiënten van MS strikten met beloftes van een succesvol behandeling met dure stamcel behandeling te ondergaan.

Het was schokkend om dit verhaal te horen en bevestigt nogmaals voor mij dat er teveel mensen zijn die kwetsbare mensen met degeneratieve ziekten zoals MS willen exploiteren.

Er is voor MS geen behandeling die het genezen, en slechts medicijnen  beschikbaar is die de progressie vertraagd, dit maakt ons zeer open voor gewetenloze mensen.

Die winst willen maken ten koste van het exploiteren van de vrees van mensen die wensen een behandeling voor hun MS te vinden.

Wij zijn kwetsbaar  door mensen met fijne beloften van behandelingen en wie MS  zou niet willen worden genezen.

Ik weet dat ik niets liever zou willen dan te genezen van mijn Primaire Progressieve MS, zou echt fijn zijn om mijn lichaam weer  opnieuw te kunnen bewegen.

Om weer te gaan wandelen met mijn schat Richie en nogmaals al onze favoriete plaatsen in de stad te gaan bezoeken.

Prachtig om zelfstandig  naar het toilet en de douche te gaan en onafhankelijk te zijn, om alle dingen te doen die ik voor de MS kon doen en nooit had bedacht dat het anders zou zijn.

Dat mijn MS zo snel zou gaan was en ernorme onaangename verassing, er was  nauwelijks tijd om te registreren wat gebeurde alvorens iets anders gebeurde.

Na mijn diagnose in 2006 ging ik online om informatie over  MS te vinden en vond ook vele aanbiedingen van behandelingen, die ik wist waren niet realistisch .

Zij allen schenen om  te exploiteren van de kwetsbaarheid van mensen met een ongeneeslijke ziekte zoals MS.

Dat is waarom het verhaal over de gewetenloze arts zo schokkend wasom op de radio vandaag te horen.
Het idee dat een arts mensen op deze wijze zou exploiteren iets wat mij zeer  ongerust maakte en mij enorm heeft geschokt.

From BBC Website 29 September

Stem cell doctor Robert Trossel struck off by GMC

Dr Robert Trossel had consulting rooms in London and Rotterdam.
A doctor who offered unlicensed stem cell treatments to patients with MS has been struck off by the General Medical Council.

Dr Robert Trossel treated several men and women, who paid around £10,000.

The GMC found that the doctor, who trained in the Netherlands, had breached good medical practice by "exploiting vulnerable patients".

Dr Trossel, 56, who worked in London and Rotterdam, conceded he had been "too enthusiastic" about the treatment.

At an earlier hearing, the GMC Fitness to Practise panel said that Dr Trossel had exaggerated the benefits of treatment based on "anecdotal and aspirational information".

 His patients, who had an aggressive and disabling type of multiple sclerosis, paid up to £10,000 or more for stem cell injections, with some raising the money through charity events.

However, the stem cells offered were not intended for human use, only for laboratory research.

Tom Kark QC, for the GMC, spoke of the patients' "anger and sense of being let down".

"They were all vulnerable patients who already found themselves failed by the medical profession in this country and as a result were searching, some with desperation, for a cure or relief elsewhere, which is why and how they ended up in Dr Trossel's hands," Mr Kark told the GMC.

"They were given false hope by him and the experience not only cost them financially but for the most part it caused them personal and emotional loss when they realised that the treatment provided to them was not only expensive but pointless."

The treatment also contained bovine brain and spinal cord, and the GMC panel ruled he had abused his position as a doctor by failing to warn patients about potential risks of vCJD.

The doctor's own lawyer had told the hearing how patients were informed about the experimental nature of the injections, and that he had stopped using them when the nature of the stem cells became clear following a BBC Newsnight investigation.

He said that the doctor was "compassionate", and had not acted dishonestly.

Despite Dr Trossel's apparent "change of heart", panel chairman Professor Brian Gomes da Costa said he had shown "little insight" into the seriousness of what he had done, and how it might have affected his patients.

Patient fears

The GMC heard that the patients involved had yet to be refunded the thousands of pounds they paid for their treatment.

Karen Galley, 45, from Essex, visited Dr Trossel's clinic in August 2006, and was charged around £10,500 for the treatment, receiving one injection in the arm and six in the neck.

‘’ It makes me feel sick that somebody could exploit vulnerable people in this way”

 Karen Galley Patient of Dr Trossel

Friends and colleagues of Ms Galley had helped her raise the money, with one running a mini-marathon and another undertaking a sponsored diet.

She said she was "angry and scared" after finding out that the injections contained bovine spinal tissue.

"His QC has described him as a compassionate doctor - but that is rubbish, no compassionate person treats people like that."

She said that she now lived in fear of diseases such as vCJD, for which there is no test or treatment.

She said: "It makes me feel sick that somebody could exploit vulnerable people in this way."

Another MS patient, accountant Malcolm Pear, from Bromsgrove in Worcestershire, visited the Rotterdam clinic in January 2006.

After paying £8,000, the treatment was delivered in a "coffee lounge" rather than a private treatment room.

"I suppose alarm bells should have started ringing then," said his wife Lesley.

She said they were led to believe that the treatment was composed simply of umbilical cells, but found out later that bovine tissue was involved.

After a fleeting improvement, Mr Pear's condition has now deteriorated significantly.

Mrs Pear said: "When you are sitting in front of a neurologist who is saying 'look, there is nothing you can do', you clutch at straws."

"I am not saying we are the most intelligent people on God's Earth, but we certainly are not completely stupid."

After the verdict, Dr Trossel said he was "disappointed".

He added: "I would like to take the opportunity to say how sorry I am for any distress caused to my patients during this time.

"During my career as a doctor, I have always practised with the objective of achieving the very best for my patients."

‘’ You have exploited vulnerable patients and their families...Your conduct has unquestionably done lasting harm, if not physically, then mentally and financially, to these patients and also to their families and supporters. ‘’

Brian Gomes da Costa of the General Medical Council


Spiny Tim said...

Those who steal from the ill-- and I include all non-evidence-based "practitioners" here-- should be dealt with harshly, if only to discourage imitators. Financial reparations should be swift and automatic.

Herrad said...

Hi Tim,
Agree with you feel this is something where financial reparations should be swiftly imposed.