Policy work archive

Here are details about The Pituitary Foundation's most significant policy work in recent years:

  • NICE consultation:  Responded to a Growth Hormone in Adults consultation.
  • CRG: Ongoing involvement with the NHS Specialised Endocrinology Clinical Reference Group.
  • Pegvisomant review: The Foundation responded to The All Wales Medicines Strategy Group regarding Pegvisomant (Somavert®). A treatment for patients with uncontrollable Acromegaly. We evidenced the benefits of the drug and our report contained the patient perspective and case studies, evidence came from patients and endocrinologists.
  • NICE consultation: Responded to a Head Injury Consultation. 
  • Social research: These have included a Membership Survey in 2010, a Needs Analysis Survey in 2005, and the 2012 Wellbeing Survey. The Foundation undertook this research primarily to find out more about the needs of pituitary patients. 
  • Adrenal Crisis proposal: The Foundation was a partner organisation in a project proposal to NCEPOD (National Confidential Enquiry into Patient Outcome and Death) in 2014 led by Dr Petros Perros a Newcastle Endocrinologist. The proposal was entitled ‘Saving lives and preventing serious morbidity of hospitalised patients with hypoadrenalism’.  Unfortunately the proposal was not successful.
  • Never Events: The Foundation submitted a report to NHS England’s review of the ‘Never Events’ framework in autumn 2014.  The Foundation contacted various politicians and leading figures within the NHS about our campaign to add inadequate administration of hydrocortisone to the ‘Never Events’ list. The ‘Never Event’ Campaign also saw 140 members write to their local politician. Unfortunately the NHS decreased the ‘Never Events’ list dramatically, from 25 incidents to only 14. With this many incidents no longer meeting their criteria it seems unlikely an incident regarding rare disease medication will be considered at the next review. The Pituitary Foundation will instead continue its efforts to improve awareness of adrenal crisis by getting resources to medical professionals and by taking part in other relevant consultations. 

We are also involved in ongoing policy work as described in the policy work page on the website.