An introduction to LAPPS, the London area support group.

[Declan]

Having just come across this website, I have seen some postings questioning what LAPPS is all about, and therefore, I would like to take the opportunity to introduce the group to your readers. The postings seemed to imply that we were secretive or had our own agenda. Nothing could be further from the truth – we are all patients and volunteers who try to help other patients. So please allow me to set the record straight here.

LAPPS is an acronym for “London Area Pituitary Patients Support” and we are a local area support group covering the Greater London area. We are a branch of the Pituitary Foundation – we operate autonomously and organise meetings and publish newsletters on a quarterly basis.

For the past few years, we have worked to make our meetings as informative as possible. Our view is that the best way to help people to deal with pituitary illness is to de-mystify it and to share knowledge and experiences. We have built up links with all of the major teaching hospitals and centres of excellence in London and have very constructive relationships with many of the consultants and endocrine teams throughout the capital. Generally, our meetings take place in the hospitals themselves and each one features a talk from a consultant on a specific issue in pituitary medicine. This is followed by a Q&A session and then we have some time for informal chats.

Recent meetings have covered topics such as “Pituitary tumours and their effects on memory and concentration”, Osteoporosis, “Pituitary and cardiovascular disease”, “Reproductive steroid replacement and Fertility”, “Endocrine issues surrounding ageing and mid-life” etc.

We also host one social meeting each year where we just go out and have some fun. This year, this meeting was a guided tour of the Houses of Parliament in Westminster. We had 70 people on the tour and it was a great success!

Our next meeting takes place on Saturday 28th November. It is on at the Royal Free hospital, Pond Street, London NW3. We meet at 10:30 in the Atrium for an 11am start. Prof. Pierre Bouloux will be speaking on the subject “Cortisol Deficiency: From assessment to replacement”. We will also have a member of the London ambulance service who will speak about their policies on treating Addisonian crises. This is an enormously important topic and affects the vast majority of pituitary patients. The meeting is open to all comers – you do not have to be a member of LAPPS and it is FREE. As it is our last meeting before Christmas, we plan to extend the informal chat time afterwards and continue in a local pub where we will supply mulled wine and a mince pie. (Again, this is free although contributions are welcome).

My name is Declan, and I have been on the organising committee of LAPPS for more than ten years, making me the longest standing member of the committee, and I act as the group’s Treasurer. LAPPS does not charge its members anything. We operate on a shoestring budget: we try to avoid paying any room hire or any other expenses where possible; we publish the newsletters as cheaply as possible and try to distribute them by email to save on postage; and we spend about £1,500 annually all-in. (Our only splash is the annual mince pie / mulled wine treat, and this is usually fully covered by donations or sponsorship.) We raise money by running a raffle at each meeting, which no-one is obliged to support, and we receive some generous donations from members or other supporters. We have a total of 684 members currently, and we get about 70 to 80 members at each meeting.

Joy is the area co-ordinator for the LAPPS group and is the primary point of contact. The email address for contact detail is:
pituitary.london@googlemail.com

Anyone can join LAPPS and receive our newsletter. If you are able to take the newsletter by email then it costs us nothing to include you on our list. We don’t mind if you live far away from London – we are happy to include you on the email. If you want a hard copy mailed to you, we can do that but would prefer not to have to send any copies long distance.

If you can’t make the November meeting, then we will meet at St. George’s hospital in Tooting on Saturday February 27th 2010. We haven’t confirmed the topic for this talk but details will follow in our next newsletter.

Thanks for reading this. I look forward very much to meeting some readers of the Pituitary Chat website at future meetings. Please do introduce yourself if you are there.

[Paul Clarke]

Hi Declan,

Firstly, let me offer you a warm welcome to our community. I am sorry I did not reply to you earlier - this was due to health issues.
Thank you for your very informative posting. I think LAPPS are doing a spectacular job in very difficult circumstances.
In fairness to our members, I don't think anyone has any issues with LAPPS per se, rather, they have issues with the current management of The Pituitary Foundation.
I guarantee you that there is not a member of Pituitary Chat that would not support LAPPS 100% in their fine work. Furthermore, if there is anything that Pituitary Chat can do to support you, all you need do is ask. Would for instance, a section on this forum called "LAPPS" be useful to you? Would a dedicated email address be useful to you? (lapps@pituitarychat.com). Unfortunately, being so young and still in the process of putting structures in place means that at this time, we are not in a position to support you financially however, I foresee this changing in the future. While any revenue we spent must first be passed by our members through a poll, I would foresee our members supporting you to the full extent of their capability.

While London is the largest centre of population amongst our community,. I see no reason why your hard useful work could not be echoed in other cities. What you have to say about LAPPS is very impressive. From what I understand, the reality is a lot more impressive and I could not congratulate you enough on your selfless and productive hard work in difficult circumstances over the years.

Once again, if you see anyway that I, Pituitary Chat or any of our members can assist you, please just ask.

Sincerely,

Paul

[Vlal]

Hi Declan

Thanks for taking the time to post about LAPPS and for providing us with information concerning meetings and how everything works.

Once I find out what is actually wrong with me, I may be along to a meeting at some point.

Vicky-Louise