En dansk tragedie

March 2014

Karina Hansen

There is a Danish proverb -

He who is afraid of asking is ashamed of learning

With healthcare where better to learn than from patients? Karina is a 24-year old who is suffering from myalgic encephalomyelitis

As with much of the research that is and has been funded, under the subterfuge of research into Myalgic Encephalomyelitis (ME), it seems a persistent theme of those entrusted with the future of people with ME and their families that they do not listen to patients.

Dr Clare Gerada, former chair of the Royal College of GPs, said at the last IiME international conference in 2013 that GPs know very little about ME.

She also said that patients know their illness better than doctors.

Common sense - something that is obvious one would think.

The obvious.

It would seem obvious that the UK Medical Research Council should not spend more on psychological research after the farcical and flawed PACE trial squandered £5 million and showed no objective improvements in patient outcomes and is clouded in controversy about methods used and claims being made [1]. Yet it goes on.

It would seem obvious and self-evident that children should not be coerced into graded exercise when they are ill and unable to attend school. Yet the SMILE study is funded -funding given to the vice-chair of the MRC/SMC collaborative of charities and organisations. in our opinion an appalling and dangerous waste of funding to flawed theories. [2]

It would seem obvious that after being taken to a Judicial Review, by patients, that an organisation such as the UK National Institute for Health and Care Excellence (NICE) would show some humility toward a patient community that for a generation has been denied proper treatment, proper research or any form of respect. Yet NICE have again not listened and ignored calls for a review of their previously unacceptable guidelines for ME. [3]

KARINA HANSEN


Karina Hansen is 24 years old, has been seriously ill for some years and was cared for by her parents in Jylland, Denmark. On 12 February 2013 she was removed by force, under police supervision, by doctors and the local authority who seemingly gained access to Karina's residence without prior notice. Later, the parents informed that Karina had been admitted to Hammel Neuro Centre for assessment, treatment and rehabilitation. Karina's lawyer has now taken over the case. [4]

It would seem obvious that locking up a young adult, stopping her family from regularly seeing her, forcing psychiatric theories and practices on her would all qualify for an investigation into human rights.

Yet one year on from this situation Karina Hansen is still locked up, with sparse information about her condition, with rumours that a UK psychiatrist is "advising" the Danish psychiatrists on treatment, and uncertainty about her condition or her prognosis.

We cannot be sure what is the current status of Karina Hansen's health.

Despite Danish national ME organisations attempting to assist no help seems to have been accepted by those currently treating Karina and no information seems to be forthcoming - either from the Hammel Neurocenter or from the Danish Health Ministry.

Yet one thing is clear - patients are not being listened to.

And lessons are not learnt from past misfortunes.

This must change.

In an attempt to break this impasse IiME last year invited the physicians at the Hammel Neurocenter to the 8th Invest in ME International ME Conference in 2013. We followed up this invitation by contacting the Danish health minister Ms Astrid Krag and inviting her. [5]

We received no reply.

"He who is afraid of asking is ashamed of learning"



In order to support a fresh attempt at helping Karina Hansen the charity has offered the new minister of health, Nick Hækkerup, an invitation to meet with clinicians and researchers at the BRMEC4 research colloquium [6] and IIMEC9 [7] events in London in May.

We have sent the invitation also to the physicians at the Hammel Neurocenter, again. IiME have offered to arrange confidential meetings with ME experts with a view to helping get the best attention for Karina Hansen. And we have offered a place at the research colloquium and at the conference.

We await a reply.

We know from too many stories of how severely affected ME patients suffer in silence and are often misunderstood by social workers, by doctors and by the healthcare system. [8]

We have written in the past that we feel it is impossible to marry the views of those who believe in the deconditioning/behavioural and wrong illness belief model of ME with those from the biomedical side.

Yet what we can agree on is that we need to exhaust all possibilities when a patient such as Karina is in such an awful situation.

This charity has never bothered with egos or status - what matters is progress.

But we recognise that to accept this invitation will be difficult for anyone whose professional authority is questioned. We understand this.

Yet it takes a greater degree of courage to accept an invitation such as this - to accept that learning never stops.

This invitation will cost everyone very little - yet it might help save a life.



Our letter to the Danish Health Minister is here -

There is another Danish proverb -

It is too late to learn to swim when the water is up to your lips



Status Update 7th March 2014

No reply from the Danish Health Ministry, the Danish Health Minister or from Hammel Neurocenter.

Status Update 16th March 2014

A new contact to the Danish Health Ministry, the Danish Health Minister and Hammel Neurocenter.

Status Update 26th April 2014

A new contact to the Danish Health Ministry, the Danish Health Minister and Hammel Neurocenter. See new letter here

Status Update 9th May 2014

A new contact to the Danish Health Ministry, the Danish Health Minister and Hammel Neurocenter. See new letter here

Related Links

Further Reading

Last Update 1/03/2014