The Pituitary Foundation attends the WAPO Summit, 2019
Sammy Harbut, our Patient and Family Services Coordinator and WAPO lead attended the Annual World Alliance of Pituitary Organisations (WAPO) Summit in Lyon from 17th- 19th May this year.
Sammy provides articles for the WAPO Newsletter Global Life , responds to requests for information and participates in WAPO projects, including the WAPO Global Awareness Team in 2018.
Friday 17th May
This year the Summit was held in Lyon, France, when business began on Friday afternoon, with 30 delegates from 21 countries, representing 17 different patient organisations. Following the official welcome, sessions began sharing of best practices, with eight presentations covering a wide range of topics. Sammy gave a presentation highlighting how she uses her knowledge and skills as an Occupational Therapist to support pituitary patients. Other presentations that afternoon included:
- feedback from the WAPO campaign in support of International Cushing’s Day (April 8th, 2019);
- a campaign in Equador to raise awareness of pituitary conditions;
- an exhibition of patient stories at four major city hospitals in Spain,
- an Acromegaly booklet recently developed in Chile;
- establishing care for patients at risk of adrenal insufficiency away from specialist centres in Bulgaria;
- the importance of good nutrition to support endocrine conditions, from the USA.
Sandra Mesri, one of the WAPO Board members then gave a presentation highlighting the aims of a Global Mapping Project which is currently being undertaken, and Karen Powell, (lead trainer for Cancer Support in France) provided an intreactive seminar entitled Silence, Tears and Challenging Statements in which she explored techniques to support patients in distress, whilst safeguarding your own health and wellbeing.
Saturday 18th May
Saturday’s sessions started at 8,30am wth presentations covering stategic planning for patient organisations, led by Kathy Redmond, (Strategic Consultant and Summit facilitator) paying particular attention to the challenge that patient organisations face due to uncertain envioronments, lack of funds and sharing the impact of pituitary disease. It was recognised that stategic planning needs to be dynamic, yet flexible enough to amend in response to changing circumstances, whilst remaining loyal to core business and patient needs.
This was followed by’ A Journey Through Clinical Research’ presentation by Rachel Jones (CEO, Swii.ch Health) who is aiming to improve the experience of partcipants in clinical trials, so they are fully included . Rachel’s mission is “ to close the gap between the science and what is meaningful to people” .
In the afternoon, all delegates and guest speakers travelled to the International Congress Centre to participate in the European Society of Endocrinolgy Pre-Nurses Session. WAPO was officially welcomed and Andrei Andrusov (WAPO Chair) explained what the purpose of the Alliance is, current membership, and hopes for the future. Sandra Mesri (WAPO Board member) then disseminated information from the recent WAPO Mapping Project (The Pituitary Foundation provided information for this).
Other presentations that afternoon included:
- Quality of Life for Cushing’s patients;
- Shared decision making and making the best of your patient consultations;
- From question to evidence- developing research question to evaluate your practice or organisation;
- Therapeutic Education to patients with Adrenal and Pituitary disorders;
- Adrenal insufficiency in patients with pituitary and adrenal conditions and impact of patient education;
- Secondary Adrenal Insufficiency with pituitary conditions: a patient’s perspective .
The afternoon concluded with a ‘call to action’ by Specialist Endocrine Nurse Practitioner Sofia Llahana, for the Development of a European Position Statement on ‘patient education and service delivery standards on the management of Adrenal Insufficiency and prevention of adrenal crisis’. This was very well received, as it is recognised that there are currently no agreed standards for these, and a lively Q& A session resulted in the motion being passed for this to be pursued.
Finally, Sofia stood down in her position as Chair of the ESE Nurses, and welcomed Sherwin Criseno as the new Chair. This is obviously a very positive appointmrnt for us as an organisation, as Sherwin is a member of The Pituitary Foundation’s Medical Coimmittee, provides assistance for our Specialist Nurse Helpline, and is generally very supportive of our work.
Sunday 19th May
On Sunday the results of the WAPO Poster contest were shared- Spain won the first prize with their poster, Taiwan won the 2nd prize. After this, the WAPO Annual General Meeting started and discussions were held in the ‘ideas round’ when new plans, ideas and suggestions for 2019-2020 were explored and decided.
As a result of attending the Summit this year, the Pituitary Foundation are looking forward to developing closer links with WAPO and partners, and will welcome welcome Sheila Khawaja (Board Member) to the UK for a few days in August 2019.
The Pituitary Foundation is highly respected by the WAPO members as an organisation representing and advocating for pituitary patients, which has matured and grown over the last 25 years, and has much to offer the wider global pituitary community. It is hoped that by developing closer links to other organisations around the world, everyone affected by pituitary disease will feel better understood and more supported. We look forward to the WAPO Summit in 2020!