April 2007, the APF Chairperson, Catherine Wormald, attended the 7^th National Conference and Inaugural Pituitary Retreat of the Pituitary Foundation of Britain. The conference was held from 27-29 April at the Ramada Hotel and Resort in Birmingham.  After a long and exhausting flight, even with a 24 hour break in Singapore, she arrived at a typical English Hotel set in beautiful surroundings. 

The conference started informally on the Friday night with a game of Trivia.  Unfortunately Catherine could not join in these activities as she could barely keep her eyes open having been on the go for at least 24 hours.  Breakfast the next morning was the first chance she had to meet some of the participants.  It was of course a typical English breakfast with bangers and fry and bacon and eggs etc and of course pots of tea, toast and marmalade.

After breakfast the day started with registration and a meet and greet session.  Catherine was very warmly welcomed by the committee of the Foundation – in particular Terry Lloyd, the Chairman, and other participants.  They were quite excited to think that someone from down under had come to their conference and of course a reciprocal invitation was extended.  Apart from the English participants there was a person from Dublin and one form Luxembourg, so only a few from outside England.  It was great to see everyone talking and greeting old friends, as well as meeting new ones.  The people Catherine spoke to were quite keen to share their stories and to find out what things are like for pituitary patients in Australia.

A few facts and figures:

• The foundation needs £259 000 to maintain basic services
• 30% comes from pharmaceutical and corporate donors which is approximately £80 000 - £90 000
• Membership and other donations raises approximately £ 60 000
• £100 000 still needs to be raised from other sources
• 7 paid staff not all full time
• 250 volunteers across the UK
• 1000's of members
• Dedicated funded help line which receives 16 calls a month
• Website has 38 000 visitors per month
• A permanent office located in Bristol
• A medical board

 

Some of the sessions that were offered:

• New Patients – what to expect
• Meet an Endocrine team
• Teens sound off
• Parents: Transition from pediatric to adult care
• Carers of adult patients
• Life coaching – learn to listen to yourself
• Let’s talk about sex
• Pituitary and your weight
• Soul work
• Dinner, auction and dance

 

All the presenters gave their services voluntarily as do our presenters here in Australia.  The venue, the food and the people were fantastic.

Participants were very interested in how pituitary patients cope in the Australian medical system as was was Catherine in how things worked in the UK.   Interestingly one thing that was the same in both countries was the difficulties experienced in getting a diagnosis.  Many people she spoke to tell the same story that is often heard in Australia.  It takes years to be accurately diagnosed and treated.  Experiences were the same with doctors – some were patient and tried really hard to help the patients while others made them feel it was their fault and that there was nothing wrong with them.

Medications and the cost of them are very different in the UK.  Some participants did not realize that we had to pay for our medications while they receive theirs free under the National Health Scheme.   Doctor’s consultations varied – some saw a different doctor at each visit whilst others saw the same doctor.  At the end of the day we each felt that there were some positives and negatives within the health systems of each country.  We all agreed though, that we wish more doctors were more open and willing to think laterally and were eternally grateful to those doctors who had the patience and perseverance to ensure an accurate diagnosis and treatment.

The UK Pituitary Foundation is run on similar lines to the Australian Pituitary Foundation in that we have state support groups and they have local groups.  The local groups are responsible for their own funds and activities with overarching support at the national level.  The local groups help when they can with fund raising and contribute to the national funds.

The UK has a larger population than Australia and therefore more members than we do here.  Also in Australia we have the tyranny of distance and members are spread over a very wide area.  Overall it was felt that our members and volunteers do a fantastic job in providing support for one another and trying to help wherever they can.  Of course without the donations from members and the sponsorship from pharmaceutical companies the foundation would definitely flounder.  This does not mean that all parties have no room for improvement.  There is always room to grow and do better.

Sessions Catherine participated in:-

Needs Analysis: The Foundation in conjunction with one of the universities had undertaken an extensive needs analysis over the time frame of a year.

• Study was done by psychologists and other volunteers
• WHO quality of life survey was used
• It was found some participants displayed post traumatic stress disorder symptoms
• Patient stories with medical commentary were collected
• Found that more effort needed to be put into educating the general population and     non specialist health professionals to improve their knowledge and understanding of  pituitary disease and to change negative attitudes

 

Parents: Transition from paediatric to adult care.   This is an area where the Australian Pituitary Foundation would like to do more.  Some of the issues that were discussed:

• Grieving the loss of one child for another
• Child before surgery comes back different after surgery
• What is meant by transition?
• How do you provide the right psychological support?
• Is there a quality of life tool for adolescents?
• When do parents let go and how do they do this
• Adolescents’ physical issues, they feel self conscious, how will they perform sexually?

 

At the end of this session Catherine expressed nothing but admiration for these parents.  The dinner that night gave her the opportunity to meet two of the children whose parents had attended this session.  As a parent who has not had to deal with this situation she could only wonder how the foundation in Australia could help.

Life Coaching – a session that provided an opportunity to look at how we manage our lives and live with a changed situation.  Some of the areas discussed:

• Being proactive or reactive
• Life coaching is about feelings, wanting to feel happier, have a better lifestyle,   manage other people’s expectations
• A need to separate past beliefs from present beliefs
• Assorted emotions needed to be processes
• A need to learn to make friends with yourself again
• Individual thinking patterns that are unhelpful
• Need to see the change as a learning opportunity
• You have value and worth because you exist

 

The dinner, dance and auction provided a time for enjoyment and hilarity as well as the serious business of raising money.  The Sunday morning session was a panel where the opportunity was given to ask any questions that had not yet been answered.

Overall it was a very positive experience.  Catherine brought back some ideas, one of which was the DI card.  A few people Catherine spoke to said they had used the card on occasion and it had worked really well.  One of the ways the UK foundation operates is through the concept of a group of medical professionals who oversee, proof read or write medical articles and information for members as well as health professionals.  Anyone who is interested and prepared to be part of this in Australia can contact the APF or even just provide some written material.  the Foundation feels it is very important for Australia to move in this direction.

Whilst in the UK she took the opportunity to meet Professor Ashley Grossman from St Bartholomew’s Hospital in London. 

Catherine Wormald (AUS Chairperson) shares friendship
 with Terry Lloyd (UK Chairman)