Sir Robert Francis

Dear Sir Robert

I am writing because you are pledged to prevent avoidable harm to patients, and I can demonstrate to you that more than a million patients are suffering avoidable harm of a grave nature. When I have raised the alarm I have largely been ignored or lied to.

The effects of hypopituitarism
[
Hypopituitarism is damage to the pituitary gland.] Head injuries cause hypopituitarism, which in turn causes some, and sometimes all, of the following effects: chronic fatigue, obesity, heart disease, loss of sex drive, infertility, depression. Its effects on quality of life are devastating: it costs people their marriages and their jobs, causes the grief of childlessness and can drive people to suicide. The suicide risk is tripled/quadrupled after head injury. Yet people with this condition could receive effective treatment.

The numbers
Hypopituitarism occurs after 20-30% of moderate-to-severe head injuries (some research puts it higher) and can happen after concussion also. It can have other causes too. It has remained virtually undiagnosed for decades, so the cases have mounted up. Mr Antonio Belli, consultant neurosurgeon at Queen Elizabeth Hospital Birmingham, quoted the million figure in an interview on BBC's 'Inside Health' programme and if anything that was an underestimate [*]. Just now, everyone is mourning the million UK deaths during the First World War, yet here is something of equal magnitude that everyone ignores.

Why hypopituitarism remains virtually undiagnosed
D
espite an Early Day Motion from Valerie Vaz MP on the topic, and a letter signed by more than 50 consultants to the BMJ, there is still no mention of the hypopituitarism risk in NICE's head injury guide. This is the main reason that medics are unaware.  A second reason (also down to NICE) is that the standard hospital discharge advice does not warn the patient of what may happen, despite there being a paragraph headed 'Long term complications.' NICE's standard response when tackled about this is that the guideline is about the acute stage of head injury, and they blandly assert that hypopituitarism takes many months to develop. There is no research to support this. In fact the research clearly demonstrates that hypopituitarism develops within hours and can cause life-threatening complications during the acute stage. Professor Chris Thompson, consultant endocrinologist at the Beaumont Hospital in Dublin has described NICE's behaviour (in ignoring research) as 'delinquent.'

What happens to patients with hypopituitarism
Almost every diagnosed patient I have spoken to has described years of fighting a misdiagnosis of ME/Chronic Fatigue Syndrome or Fibromyalgia, usually having to pay many thousands of pounds of his/her own money for private testing before being able to prove what was wrong. I imagine most of those others - the missing million - suffering with undiagnosed hypopituitarism are receiving the same misdiagnosis, but do not have the money. I have written an article for the Mail on Sunday about this. dailym.ai/1gWRisu

This is absolutely cruel and unjust and must stop
And I hope you are the man to do it! I applaud what you have done so far.

With best regards

Joanna Lane
Joanna Lane BA Hons (Oxon) 28 Southwood Avenue Coulsdon Surrey CR5 2DT Tel: 020 8660 5774
www.headinjuryhypo.org.uk



[*] The research on which this figure is based is:

  • Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA http://jama.jamanetwork.com/article.aspx?articleid=208915 Based on the incidence of patients hospitalized for TBI and SAH reported in the literature and the frequencies of hypopituitarism in these patients, we have previously estimated the incidence of hypopituitarism caused by these disorders to be more than 30 patients per 100 000 population per year.
  • Fernandez-Rodriguez E et al, Hypopituitarism following traumatic brain injury: determining factors for diagnosis, Front Endocrinol 25 August 2011 doi: 10.3389/fendo.2011.00025 http://www.frontiersin.org/Pituitary_Endocrinology/10.3389/fendo.2011.00025/full The incidence of hypopituitarism following TBI is around 50 patients per 100,000 individuals per year, which results in a high number of patients affected.
  • The link to 'Inside Health' is   http://www.bbc.co.uk/programmes/b01rr37c
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