CONTENTS OF BUNDLE A

NICE materials

Head injury guideline

The head injury guideline CG56 and its appendices are both very lengthy documents, available on this link http://guidance.nice.org.uk/CG56/Guidance . I have attached only the sections that are relevant to my complaint. These are:

Document 1: Chapter 1 – Background and Scope

Document 2: Chapter 8 – Discharge and follow up

Document 3: Chapter 9 – Admission and observation

Document 4: Appendix A – Remit and Scope

Document 5: Appendix E – Suggested written discharge advice card for patients aged over 12 years who have sustained a head injury

Document 6: Appendix F – Suggested written discharge advice card for carers of children who have sustained a head injury

Document 7: Appendix G – Suggested written discharge advice card for carers of adults

Other relevant documents

Document 8: NICE Audit support, head injury (December 2007)

Document 9: NICE Guidelines Manual, Chapter 14, Updating clinical guidelines and correcting errors

Document 10: NICE Social Value Judgements, Chapter 3 Fundamental operating principles, 3.2 Procedural principles.

Document 11: ‘Changes I would like to see to CG56’

Document 12: letter from Professor Chris Thompson to Mrs Joanna Lane dated 17 July 2009

Studies

[1] Hypothalamopituitary dysfunction following traumatic brain injury and aneurismal subarachnoid hemorrhage: a systematic review, Schneider HJ et al, JAMA 2007

http://www.ncbi.nlm.nih.gov/pubmed/17895459 

 [2] Hypopituitarism and brain injury: recent advances in screening and management, Pickel J et al, F1000 Medicine Reports 2009, http://webcache.googleusercontent.com/search?q=cache:1LOB5-_Ni-0J:f1000medicine.com/reports/10.34

[3] Prevalence of anterior pituitary dysfunction in patients following traumatic brain injury in a German multi-centre screening program, Berg C, Experimental and Clinical Endocrinology and Diabetes Feb 2010. http://christie.openrepository.com/christie/handle/10541/109060

[4] Should anterior pituitary function be tested during follow-up of all patients presenting at the emergency department because of traumatic brain injury? Van der Eerden K et al, European Journal of Endocrinology, 2010 http://www.eje-online.org/cgi/content/abstract/162/1/19 

 [5] Hypopituitarism following traumatic brain injury: the prevalence is affected by the use of different dynamic tests and different normal values, Kokshoorn N et al, European Journal of Endocrinology, 2010 http://www.eje-online.org/content/early/2009/09/25/EJE-09-0601.short 

 

 

CONTENTS OF BUNDLE B

Correspondence between NICE and Ms Joanna Lane numbered 1-34

 

Date Document Page No

26.11.08 1: JL to Natalie Whelan 2

26.11.08 2: Natalie Whelan to JL 4

28.11.08 3: Natalie Whelan to JL 5

18.12.08 4: JL to Natalie Whelan 7

29.12.08 5: Natalie Whelan to JL 8

20.02.09 6: JL to Natalie Whelan 9

26.02.09 7: JL to Andrew Dillon 10

27.02.09 8: Natalie Whelan to JL 12

06.03.09 9. JL to Natalie Whelan 14

24.03.09 10: Teresa Birch to JL 15

24.03.09 11: JL to Teresa Birch 16

26.03.09 12a: JL to Teresa Birch 17

26.03.09 12b: JL to Teresa Birch 18

27.03.09 13: JL to Teresa Birch 19

15.04.09 14: Andrew Dillon to JL Ap 1

24.04.09 15: JL to Andrew Dillon 21

27.05.09 16: JL to Andrew Dillon 22

11.06.09 17: Fergus Macbeth to JL Ap 2

29.06.09 17a: Teresa Birch to JL 24

01.07.09 18: JL to Teresa Birch 25

19.07.09 19A: JL to Natalie Whelan 26

19.07.09 19b: JL summary FOI request 27

19.07.09 19c JL ‘omission causes harm to patients’ 29

17.07.09 20: Chris Thompson to JL Ap 3

30.07.09 21: JL to Fergus Macbeth 32

17.08.09 22a: Alana Christopher to JL 41

17.08.09 22b :FOI Docs 1,2,3,7,8,9,10,11,12,13,20,21,22,25 Aps 4-17

10.09.09 23: JL to Alana Christopher 48

09.10.09 24: Alana Christopher to JL 54

23.10.09 25: JL to Alana Christopher 56

30.10.09 26: JL to Andrew Dillon 58

30.11.09 27: Andrew Dillon to JL 60

07.01.10 28: JL to Andrew Dillon 62

11.01.10 29: Andrew Dillon to JL 63

19.08.10 30: Moya Alcock to JL 64

01.07.10 31: JL to Jane Cowl 65

19.08.10 32: Teresa Birch to JL 67

22.07.10 33: JL to Teresa Birch 68

19.08.10 34: Moya Alcock to JL 69

 

DOCUMENT 1

 

From: Joanna Lane 

Sent: 26 November 2008 13:59

To: Natalie Whelan

Subject: Updating CG56 on head injury (hypopituitarism)

Dear Natalie

Thank you for listening to me just now!

I have patched in below an example of the recent research on hypopituitarism as a consequence of brain injury.You will see that 28% to 69% of brain injury survivors have pituitary damage. 

As I was explaining to you, we think it's likely that our son's impotence (discovered by us after his death) was related to a severe head injury he had when he was seven. He would not consult a doctor about his ED, according to his ex-girlfriend, but he did seek help for his depression, and saw two GPs, a psychiatrist and two counsellors. None of them was aware of the research, so his history of TBI rang no bells. But if it had, they would have assessed his pituitary function and we understand he could have been treated successfully with testosterone patches.

We think it's vital to update your Guideline on Head Injury (CG56) to reflect this. In particular Appendices E, F and G, which give sample discharge advice cards, should include a warning that pituitary problems may become apparent years after the injury, in adolescence. And if it's impotence, the patient won't necessarily seek help.

I also think advice relating to depression and erectile dysfunction should point out that head injury can be a cause.

If you would like me to send you more research on the topic I'll be very glad to. 

 

With best wishes

 

Joanna Lane

 

The effects of head trauma on hypothalamic-pituitary function in children and adolescents. 

Endocrinology and metabolism 

Current Opinion in Pediatrics. 19(4):465-470, August 2007.

Einaudi, Silvia; Bondone, Claudia 

Abstract: 

Purpose of review: Endocrine dysfunctions have been increasingly recognized following traumatic brain injury. Ever more numerous studies on acute head-injured adults have also raised concern about this risk in children and adolescents who have experienced head injury. The current review of the pediatric literature summarizes recent findings on acute-phase dysfunction and traumatic brain injury-associated hypopituitarism. 

Recent findings: The pathophysiologic mechanisms underlying acute-phase hyponatremic and hypernatremic disorders have been elucidated. Prospective studies on traumatic brain injury-associated hypopituitarism in pediatric patients are ongoing and preliminary data are available. 

Summary: Traumatic brain injury, a 'silent epidemic' (my emboldening) that carries a considerable burden of disabilities, leads to a variety of endocrine dysfunctions in 28-69% of adult acute head-injured patients. In the acute posttraumatic phase, adrenal insufficiency and electrolyte disorders are critical conditions. Neurosurgical patients, particularly those prone to neurological damage, require prompt diagnosis. Hypopituitarism may be diagnosed months or years after a traumatic brain injury event. Since growth hormone and gonadotropin secretion are most frequently compromised, careful follow-up of growth and pubertal development is mandatory in children hospitalized for traumatic brain injury. 

(C) 2007 Lippincott Williams & Wilkins, Inc.

 

 

NICE Correspondence