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 

  • National Institute for Clinical Excellence: We are registered as stakeholders with The National Institute for Clinical Excellence (NICE), providing comments for inclusion in NICE Clinical Guideline Quality Standards through formal consultation periods.

From September 2017-2018, we have provided comments in the following areas of practice, which have been incorporated into new published Clinical Standards in each area:

- Depression in adults

- Chronic Fatigue Syndrome

- Emergency and acute medical care.

  • New Acromegaly treatment: In December 2017 we were delighted to hear that this vital medication will now be made available on the NHS to patients with uncontrolled Acromegaly. During 2017, The Foundation has been taking part in both countries medication appraisal processes. We submitted case studies and information about Acromegaly, ensuring there was clear evidence of the devastating consequences of living with uncontrolled Acromegaly and the impact on quality of life. The Foundation completed patient group submission reports, and spoke at meetings alongside various endocrinologists and assessors.

    Thank you very much indeed to the patients who took the time to complete our questionnaire about living with uncontrolled Acromegaly, your input was invaluable.

  • We’ve been flying the pituitary flag at The Houses of Parliament… A huge thank you to Virendra Sharma MP for hosting a meeting that our Campaigns, Volunteers & Events Manager, Rosa Watkin, was invited to attend to speak at The Houses of Parliament recently. The meeting was about NHS England’s specialised commissioning, specifically the decision making process for funding rare disease treatments. The discussions included how to ensure rare disease treatments are prioritised as much as they can be at a time when there is increased financial pressure on the NHS, and ways patient organisations can support NHS England to assess new medications. The meeting was attended by NHS England’s Specialist Commissioning Directors, patient organisations, pharmaceuticals and MPs.

  • We helped improve the ambulance staff guidelines for treating adrenal crisis. The Foundation has been involved in a review process of the guidelines for adrenal crisis produced by The Joint Royal Colleges Ambulance Liaison Committee. We are delighted that our recommendations were incorporated to the new UK manual which was launched on 20th September 2017. Therefore, there is now more detailed information available to ambulance staff which will hopefully help improve awareness regarding the treatment of patients experiencing an adrenal crisis – if you would like more information there is a news article about these changes on our website. 

  • New Acromegaly treatment: We have an exciting policy work success to announce, as during 2015 The Foundation has been involved with the Scottish Medicine Consortium's assessment of Pasireotide (Signifor®), a new medicine for uncontrolled Acromegaly. The decision was announced that Pasireotide will now be made available on the NHS in Scotland which is excellent news. The Foundation was involved through completing a patient group submission report, and we then took part in the PACE meeting in Glasgow alongside various endocrinologists and assessors. We were able to put forward the patient and carer perspective, case studies, and information about Acromegaly allowing the assessors to understand the devastating consequences of living with uncontrolled Acromegaly. You can read about the new medication at: www.scottishmedicines.org      The Foundation was also involved with The All Wales Medicine Strategy Group’s assessment of Pasireotide (Signifor®), a new medicine for Acromegaly. The decision was announced in June 2016 that we helped to ensure that Pasireotide has now been approved and is available on the NHS in Wales. The Foundation was involved through completing a patient group submission report, and we presented at the CAPIG meeting in Cardiff. Previously there have been no other medications available in Wales for these patients. 
  • Social research:  We are currently involved with a quality of life questionnaire supporting Dr Sofia Llahana a Nurse Consultant in Endocrinology.
  • Rare Diseases UK: Since 2013 The Foundation has been involved with Rare Diseases UK and we are a member of this umbrella organisation. We attend annual events at The Welsh Assembly and House of Commons, and we support Rare Disease UK’s regular campaigns through signing and publicising petitions and contacting politicians.
  • Ongoing policy work: The Foundation regularly publishes studies that are being undertaken by external parties looking for patient involvement. We are also invited by pharmaceutical companies to take part in reference groups and to represent the patient's voice. 
  • Ongoing horizon scanning and working with other organisations: The Foundation keeps up to date by making sure we are aware of policy decisions that we should respond to on behalf of pituitary patients. We follow the activities of government's policy work, relevant cross party groups, charity sector organisations' e-bulletins, health boards, other endocrine based organisations, and commissioning bodies. We are a member of The Specialised Healthcare Alliance, a coalition of patient-related groups and corporate members who campaign on behalf of people with rare and complex conditions in need of specialised care.