Court of Protection Approves Pioneering Creutzfeldt-Jakob Disease (CJD) Treatment

The Court of Protection has given doctors permission to trial a new experimental treatment for Creutzfeldt-Jakob Disease (CJD) on a British man.

Doctors from the University College London Hospitals NHS Foundation Trust successfully applied to use the new, man-made antibody PRN100 to treat a patient suffering with CJD – often termed a human form of mad cow disease. The trial will be the antibody’s first use on a human, with doctors admitting that although lab tests of the remedy have shown encouraging results, they can not be sure how the patient will react to the drug.

The Court of Protection ruled that it was both lawful and in the best interests of the patient, who has not been named, to use the treatment.

At present, the rare brain condition is incurable and “always results in the rapid death of the patient.”

UCLH chief executive Professor Marcel Levi called the court’s confirmation “an important step forward in tackling this devastating illness.”

Professor John Collinge, director of the Medical Research Council Prion Unit at University College London, affirmed that the treatment would “proceed with extreme caution in very tightly-controlled conditions,” initially to be administered intravenously using a drip.

Judge rules treatment is “plainly” in patient’s best interests

The patient involved in the case gave support for the UCLH’s application to the court, as did his immediate family. In addition, workers at the office of the Official Solicitor, who help ensure that people lacking mental capacity receive full access to justice under the legal system, gave backing for the treatment.

Sitting in the Court of Protection, High Court judge Mr. Justice Cohen heard the application, in which the hospital submitted that evidence from their trials of the antibody gave "reasonable cause for hope" that the "world first" therapy would do "what it is supposed to do.”

The judge ruled that despite the risk of unknown side-effects, the lack of alternatives and promising results of lab testing showed that it was "plainly in [the patient’s] best interests that he should have treatment and that I should approve it.”

Doctors at UCLH’s Prion Unit – established in the wake of the mad cow disease outbreak in the 1990s – have been working on developing the antibody for twenty years. UCLH trust said that a range of possible outcomes could emerge from the treatment – from no measurable effect whatsoever to a slowing or even halting of the disease’s progression.

It is not expected that the treatment will reverse any brain damage that has already been sustained.

Jacqueline Almond, Partner at IBB Solicitors and Court of Protection expert, commented:

"Where an individual lacks consent, the Court has to authorise experimental treatment. In doing so it assessing what is in the individual’s best interests. This is includes taking advice from medical and other experts as well as taking account of the views of family members and others close to the individual. In this case the outcome could have wider implications for the treatment of those suffering with CJD".

Campaigners welcome court ruling

Created in its present form by the Mental Capacity Act 2005, the Court of Protection has the statutory power to make financial and welfare decisions on behalf of those lacking the mental capacity to do so.

Judges rule on issues including both whether an individual has the mental capacity to make their own decisions and on how their affairs should be managed on their behalf if not. Due to the rapid onset nature of CJD, many patients lack the capacity to consent to treatment by the time they are diagnosed with the condition.

Colin Beatty, of the Cure CJD Campaign, welcomed the court ruling to allow pioneering treatment, stating: 'It's true that the treatment carries potential risks, and the benefits are not yet certain, but without it, there is no hope. The only certainty with CJD is death.'

The charity asserts that lab testing has provided “proof of principle” that PRN100 works, rendering the experimental treatment the only viable hope that patients currently have of surviving the “rapidly and invariably fatal” condition.

Contact our solicitors for advice on Court of Protection matters

IBB Solicitors has niche expertise on applications to the Court of Protection and two of our partners act as professional deputies. For advice on Court of Protection and other matters please contact a member of the Wills, Trusts and Probate team today. Call us on 03456 381381 or email estatemanagement@ibblaw.co.uk.