On-line Patient and Carer Forum

(July 2010) In the summer of 2010, the Pituitary Foundation will be re-launching its On-line Patient and Carer Forum on this website.  The ‘new’ forum will be moderated by a team of vetted and trained volunteer moderators, with the mission to provide the opportunity for people to chat, give practical support, share information and network in an appropriate and supportive way.  Our forum will be offered only to subscribed members of The Foundation (to become a member, please click here). 

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Membership Survey

(July 2010) In the Summer edition of Pituitary Life (mailed to subscribed members of The Pituitary Foundation), we will be conducting our first-ever membership survey.  The results of this survey will give us insights into who our membership is; why they become members; their priorities for raising awareness; and their experiences with emergency Hydrocortisone and Growth hormone. 

We urge all subscribed members of The Foundation to complete and return their surveys once received (deadline, 1 September 2010).  Results will be published in the February 2011 edition of Pituitary Life.

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Volunteer Programme Update

(June 2010)  The Pituitary Foundation has nearly 90 core volunteers who offer service and support to the pituitary community throughout the United Kingdom and the Republic of Ireland.  Many of these volunteers have been giving their time and expertise for years and, in doing so, significantly increasing the amount and scope of support we provide.  The roles they take on are often time-consuming and demanding, but our dedicated volunteer team carries on, growing year after year.

With the goal of sustaining the team that supports pituitary patient, staff at The Pituitary Foundation will be assessing and improving our Volunteer Programme in order to offer more support, communication, training, guidance and acknowledgement to this vital team of individuals who give so much back to their community.

Pending funding, we hope the completion of this project will culminate in a Training Weekend for our volunteers where we can launch the revitalised programme, deliver appropriate training and offer this team the appreciation they deserve.

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Booklet Project

(Updated June 2010)  In response to the results of our social research, the Needs Analysis, Infertility Questionnaire and Patient Satisfaction Survey (see below) which was conducted by the team from the University of the West of England, the Pituitary Foundation has undertaken an update and augmentation of our resource library.  This three year project has seen us update all of our booklets and add eight new titles with further titles pending.

These include:

• NEW  Employment
• NEW  Hydrocortisone: Advice for the Pituitary Patient
• NEW  Hydrocortisone: Advice for the Pituitary Parent
• NEW  Hydrocortisone: School Care Guide
• NEW  Living with Infertility
• NEW  Psychological Impact of a Pituitary Condition: Diagnosis and Treatment
• NEW  Relationships and Communication: with Yourself and Others
• NEW  Your Journey: Living With a Pituitary Condition
• UPDATED  The Pituitary gland, Its Disorders & Hormones Explained
• UPDATED  Pituitary Patient’s Handbook
• UPDATED  Patient Care Card
• UPDATED  Acromegaly
• UPDATED  Cushing's
• UPDATED  Diabetes Insipidus
• UPDATED  Male Hormones & Infertility
• UPDATED  Prolactinoma
• UPDATED  Pituitary Surgery & Radiotherapy

(Please click here to view any of the booklets online)

By the end of 2010, we will be publishing our updated GP FactFile and a new booklet, Pituitary and Your Weight. 

In future, each booklet will be reviewed prior to reprint in order consistently to provide up-to-date information to our community.  

This project took a great deal of time, expertise and funding.  We would like to thank the many endocrinologists who edited our booklets as well as the UWE team, especially Dr. Marianne Morris and Dr. Sue Jackson, for volunteering to share their expertise.  We would also like to thank The Society for Endocrinology who provided funding to assist with this important project.

We are very pleased with the result and popularity of this project, which has seen a significant increase in orders from clinics and individuals.  From January 2010 to May 2010, we have sent out 5,652 booklets when, five years ago, we would send out approximately 2,500 booklets in an entire year.

If you would like to donate to The Pituitary Foundation to help us with projects like these or our many other programmes and services, click here.

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Pituitary Awareness Week 2009

(June 2009 - Updated June 2010)  During Pituitary Awareness Week 2009, we launched a campaign to celebrate our 15th Anniversary:

15 Years - 15,000 Letters - £15,000

We asked our community to send campaign letters which were targeted at different medical professionals, including GPs, Practice Nurses, A&E doctors, ambulance personnel and even endocrinologists and endocrine nurses.   We also challenged our community to help us raise £15,000, encouraging them to organise walks around the UK.

Although we did not reach our goal of 15,000 letters sent and £15,000 raised, we did see some fantastic successes.  We are working more closely with ambulance services to help them understand emergency hydrocortisone better; our booklet orders from endocrine clinics are up substantially, telling us that more clinics know about the resources available and they are getting to more members of our community; we had awareness walks in Aberdeen, Cambridge, Cardiff and Somerset, all of which raised over £8,000. 

Pituitary Awareness Week 2010 is 19 - 25 September, 2010.  Stay tuned to our website to learn how you can help us raise awareness about pituitary disease.

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Patient Satisfaction Survey

(UPDATE - October 2008) The team at the University of the West of England (UWE) completed another social research project to help us better understand our members' experience.  In July 2007, the UWE team sent 1,000 surveys to a random sample of members of The Pituitary Foundation.  They received 490 completed returned surveys.  The goal for this project was to assess satisfaction with diagnosis, treatment decisions, information access and managing conditions as well as the role the services and programmes The Pituitary Foundation during the pituitary journey.

We have assessed the results of this survey and we will utilise them, along with the Needs Analysis (see below) to evaluate and improve the services we offer.  Further, we hope to use the results of this survey to inform the medical community about the experience of our members, to increase awareness and to improve patient satisfaction. 

You can read the results of the Patient Satisfaction Survey here:  Patient Satisfaction Survey Final.pdf (278.98 KB)

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Infertility Questionnaire

The team at the University of the West of England (UWE) conducted a study to assess the emotional impact of infertility in patients with hypopituitarism.  The goal was to assess perceived stress, life satisfaction and coping strategies.  Sixty-one members of our community completed this questionnaire, giving us insights into how infertility affects members of the pituitary community which allowed us to provide additional support (see our Living with Infertility booklet [link to booklet]).

We would again like to thank the team at UWE, including Pascale Harrison, Dr. Marianne Morris and Dr. Sue Jackson.

You can read the Final Report here:   Infertility Questionnaire Report.pdf (144KB)

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Needs Analysis

(Updated May 2008)  The Pituitary Foundation, with generous support from the University of the West of England (UWE), launched a Needs Analysis in 2006. The goals of the Needs Analysis were to ascertain:

• Do we understand about the ways in which having a pituitary condition impacts on patients?
• Do we know enough about how pituitary patients are affected by the services they receive?
• Do we know about other services or support that people would like?

We had a wonderful response from the pituitary community for this analysis.  The results have been published extensively and can be read here:    Needs Analysis Report.pdf (344.11 KB)

(The Pituitary Foundation will be increasing its booklet library to address some of these needs - see above).

Did you find this information useful?  This information has come to you through the kind support of our donors, many of them pituitary patients and carers of pituitary patients. If you would like to help to ensure that this service continues to be available, please contribute by clicking on the button:

Your donation will be secure and GiftAid will be assessed for UK taxpayers, increasing your donation by up to 28%.  Or send a cheque, payable to The Pituitary Foundation, to:  The Pituitary Foundation, PO Box 1944, Bristol, BS99 2UB.

Please help us continue to provide crucial information to the pituitary community by donating today.

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