Welcome to the proceedings of our Fourth National Conference.

As your founding Chairman, I think it is a valuable exercise to look back at the years since our birth as a new charity and ask what the ingredients have been that have made up our undoubted success.

The initial idea of a patient support group for pituitary patients and their families and carers dawned on a small group of us almost ten years ago. It was on 13th July 1993 that we held the first meeting of the Working Party and it is from this meeting that The Pituitary Foundation grew. The Working Party met regularly over the next 16 months with a number of people giving freely of their time and expertise. As a result of this The Pituitary Foundation was formally launched in London on 23rd November 1994, with a series of regional launches also being staged around the country. This led us to register The Pituitary Foundation as a charity and as a company limited by guarantee in September 1996.

At this time The Pituitary Foundation had no home and no money! For 4 years the Society for Endocrinology very generously provided a physical home in their offices in Bradley Stoke, North Bristol. Around this time we started getting our first financial donations (including an invaluable gift of &pound10,000 from one patient) we had produced five patient information leaflets and the GP Factfile and then were able to provide the patient support helpline service. Initially, this was provided by the Patient Support Administrator, and later a Nurse Counsellor was specifically employed to provide telephone counselling support. We moved into rented premises in Bristol and in 1997 appointed our first part-time manager. This was a time of rapid development for the Foundation. Membership grew - and still continues to grow at a rate of about 110 per month. In April 1998 we held our Inaugural National Conference in Bristol, and by this time we already had 23 local support groups. We had also published our seventh patient information leaflets and begun to produce our quarterly newsletter - Pituitary News.

Since that time we have held two more national conferences, employed National and Regional Co-ordinators to support the growing network of local support groups and secured two successive grants from the Community Fund and a grant from the Department of Health. All of this has been achieved from a small rented office in Bristol!

During the past year:

• We have recruited, part-time, Neil Jeffries, our Bookkeeper, Jesse Malone, Head of Fundraising and Grace Wiltshire, who succeeds Joan Cox as the Carer Project Manager.
• We have increased the titles we publish to 10. Our publishing plan for 2003 is ambitious and includes the translation of The Pituitary gland and its Hormones into ethnic minority languages.
• As a result of the hard work and inspiration led by Patsy Perrin and Tim Wheadon, we had a very successful application to the Community Fund and were awarded £398,175 for a three-year Early Awareness Project. This will enable the National and Regional Co-ordinators to become full-time roles as from January 2003.
• We now have 40 local support groups. These are the backbone of the Foundation and the Foundation has been so effective in providing local support to our members all over the country.
• Patsy Perrin and Dr Janet Harbour worked very hard on our submission for the NICE appraisal of Growth hormone replacement in adults. The amount of work, well over a year up to the appeal meeting in August, took an enormous toll on our time. The fact that volunteers had to put in so much time and effort without any direct support from NICE or the government reveals a major problem in the process by which NICE expects to get patient feedback. Despite this we were able to put in the necessary work and ensured the widespread lobbying of MPs by our growth hormone deficient members. In collaboration with the Society for Endocrinology we carefully selected robust appeal points and gained a fresh hearing for the use of growth hormone. NICE is currently looking at mechanisms to select the pituitary patients who will benefit from growth hormone. This is the first time that NICE has referred such a significantly revised directive to their appraisal committee and indeed is the first time that an informal preparatory meeting has been arranged in late November, in advance of the next appraisal meeting in January. We are increasingly confident of success, but remain very conscious of the difficulty that the current postcode lottery poses for our members.

In the expectation that NICE will link a positive discussion for adult growth hormone with clear criteria for patient selection and further clinical trials to quantitate the quality of life responses to growth hormone, I am delighted that Professor Ron Akehurst, Dean and Professor of the Sheffield Health Economics School of Health and Related Research has accepted my invitation to talk at the conference. He is uniquely qualified to discuss how NICE works and how one is able to assess 'quality of life'. NICE regularly turns to him and his school to provide analysis of trials of medicinal therapies.

I should now like to reflect on the strengths of the Foundation which have underpinned our success. The Foundation has always been an organisation based on a partnership between patients, carers, health care professionals and the pharmaceutical industry. The recent success of our appeal to NICE was a superb example of the positive influence we can exert when we work together with our medical colleagues. In addition our strength comes from the following key aspects of our organisation:

1. Patient led: Although our first Chairman has been an Endocrinologist, we have always endeavoured to ensure that the organisation is effectively led by patients and carers. This can most clearly be seen by Patsy Perrin's appointment as Vice-Chairman and now by Andrew Hewitt taking on the Chairmanship.
2. Volunteers: These have always been the backbone of the organisation. The Trustees, Area Co-ordinators, Telephone Buddies, Local Support Group committee members and members of the Steering Group are, and always have been, a remarkably resilient mainstay of the Foundation. It is impossible to thank them enough for all the work they have done for our members.
3. Quality: It is only because of our clear focus and the excellence of our work that we have been successful with two National Lottery Charities Board (now Community Fund) grants, the Department of Health grant for the Carers Project as well as grants from pharmaceutical companies and several other sources.
4. The level of support from the medical profession and Society for Endocrinology: This level of support is absolutely vital - not only today when we have 23 speakers providing their services free of charge - but also for their help as Trustees, members of our Medical Sub-committee, help with publications and as speakers to local support groups.

At this successful stage, I feel that it is appropriate to hand over the Chairmanship and I am delighted that Andrew Hewitt is enthusiastic to take over the reins. I hand over a thriving organisation that helps pituitary patients, their families and their carers in so many ways. Furthermore, through its recent experience with NICE, it recognises both the national responsibility it bears and the potential influence it can exert on behalf of pituitary patients.

In the week coming up to the conference I am delighted to announce that we gained our 10,000th member!

Professor Stafford Lightman
University of Bristol

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