Policy work

In recent years The Foundation has been involved with greater amounts of policy work. This includes such activities as: responding to government consultations, surveys, policy briefings and position statements. Equally, policy work can involve social research, participation in reference groups, and supporting other organisations’ activities. 

To see a list of our policy work archive click here 

Here is some information about our more recent activities 

  • Response to the new Rare Disease Framework 

    On Saturday 9 January 2021, the UK Government published a new UK Rare Diseases Framework. This document sets out the underpinning themes and priorities for the next five years that must be acted upon if the lives of people with rare diseases are to improve. Click here to read more >

  • NICE Consultations
    The Pituitary Foundation registered as a Stakeholder with NICE (National Institute for Health and Care Excellence) in 2017. As a registered stakeholder, we are included on the list of stakeholders when NICE guidelines are being developed. As stakeholders, we are notified when current Guidelines are to be updated, and invited to submit comments for consideration in the updated Guidelines.

    Since 2017, as an organisation we have submitted comments in relation to the following topics, which we consider to be relevant to our pituitary community:

    • Acute and emergency care
    • Chronis fatigue
    • Depression in Adults: recognition, treatment and management
    • Depression in children and young people: I dentification and management
    • Traumatic head injury
    • Workplace health: Long term sickness absence and capability to work

    Due to Covid-19, the NICE quality standards programme was suspended in April 2020. However, guidelines are slowly beginning reintroduced. Initially, NICE are prioritising those topics that are of relevance to the COVID-19 pandemic. However, there are also a number of quality standards in development that, while not directly relevant to COVID-19, have progressed significantly through development and will be completed.

    Weight Management is one of those guidelines being developed, and which we have registered as a stakeholder. Originally scheduled to hold a scoping workshop in March 2020, to discuss Obesity, this topic was postponed. It has now been broadened into a complete Weight management suite however, with an invitation to submit comments which will be published in December 2021

    The Pituitary Foundation will be submitting comments in relation to the 5 areas:

    a)         Obesity prevention (CG43)

    b)         Weight management: lifestyle services for overweight or obese children and young people (PH47)

    c)         BMI: preventing ill health and premature death in black, Asian and other minority ethnic groups (PH46)

    d)         Obesity: identification, assessment and management (CG189)

    e)         Preventing excess weight gain (NG7)


    Finally, we also submitted comments to AWPEG (All Wales prescribing Advisory Group) for the consultation ‘Agreement for shared prescribing of somatostatin analogues to treat neuroendocrine tumours’ in 2019 via the All Wales Therapeutics and Toxicology Centre (AWTTC).