On Saturday 3rd October we held the 2015 Patient Conference for Polycystic Ovary Syndrome (PCOS) in London. It was an extremely successful day with panels of experts discussing Metformin and weight loss; and specific talks on the menstrual cycle, fertility and excess hair.
Many of the women who attended fed back that they would like to hear more from Verity on what is currently going on and what it takes to run the charity.
To start, as most of you know, Verity is run entirely by volunteers from the chair to local group leaders and the individuals who send out GP and membership packs to you. As there are under 10 individuals who run the charities’ day to day activities it can be demanding at times. A typical volunteer will do a full weeks paid work (and often more as we have lawyers, healthcare professionals and media professionals in the mix) and will spend multiple evenings and weekends organising each year’s conference, attending talks and speaking at events in order to better educate and spread awareness of PCOS. We also spend time liaising with potential private partners to fund future research projects and day to day duties such as replying to member and patient queries, making up and sending information packs, maintaining the website and monitoring the forum and Facebook pages. When it’s conference time, or when we need to attend an event in the middle of the week or far from home, we do have to use our holiday allowance and ask for favours from managers to accommodate them.
Verity took a large drop in funding in 2014 and ran on just £21,722 for the entire year. This continuing cut of funding from a reduction in membership and less fundraising has meant that certain activities have had to stop such as the PCOS UK conferences for the education of medical professionals that we used to run 1-2 times a year.
Despite this our chair, Rachel, is currently at the International Androgen Conference in Italy discussing the potential name change of PCOS as a representative of the patient view. She is there alongside US and Australian representatives, after funds were kindly donated to enable us to attend. When she flies back later this week, herself and our Secretary, Caroline, will be meeting PCOS Challenge (US) in London to discuss how we can support each other and raise awareness at an international level. Caroline is also taking time off work this week to speak at the Association of Fertility Patient Organisations conference further raising awareness of the condition.
So as you can see we do a lot with quite little. We work on longer term projects in the background. One of which is Project PCOS which many of you took part in at the end of last year. The aim of Project PCOS was to find out about your own awareness and support received with PCOS – the results of which will be published in the coming weeks and we hope to see some media activity around this. We will be repeating this survey annually to track the change in awareness and support that you are receiving.
In terms of media coverage in the past year Verity were recently invited by Islam TV to attend a discussion on PCOS, TV programmes that our members have taken part in have been broadcast on C4 and Sky and there are a few more in progress right now. From a social media perspective we have had interaction with Izzy Judd and Nihal (from BBC Asian Network) on the topic of PCOS, further spreading awareness.
At the moment there are multiple projects that are at the starting stages going on in the background and we need your support to make them a reality. We are actively recruiting volunteers to take care of the smaller day to day tasks and to assist on our larger projects in the near future – we simply need more people to make some of these things a reality. To see what we’re looking for and submit your details please see our previous volunteer call out post. Even if you don’t feel able to volunteer on a regular basis you can still help us whether that be taking an Information pack to your local GP, hospital or even beauty salon; running a coffee morning to raise awareness and some funds or making yourself available for media projects and press enquiries.
One small thing you can do right now is share the picture below. Recent research studies show that PCOS now effects 1 in 5 women and we need to find and support them. So make it your profile picture, tweet it, Instagram it or take a selfie with it and share your story. PCOS is hard to deal with but we know from the feedback from the conference and from our Local Support Groups that meeting others lets us know we’re not alone and we achieve more together.