2012 Annual General Meeting

During our June Oxford Annual General Meeting I delivered an update of PSC Support’s status, 2011/12 financial year results and future direction.  As an organisation we aim to act with complete transparency and access to governance information for our members and so I’d like to take the opportunity to provide a summary of PSC Support’s previous year.

Our Objectives

As a small, volunteer-based organisation having clear objectives allows us to maintain focus on the key areas we exist to do, which is to:

  • provide information and support to those affected by PSC and the medical community;
  • promote awareness of PSC, PSC Support and organ donation;
  • develop effective partnerships with those involved in the treatment of and research into PSC.

Communicating Effectively

We’re mindful to present ourselves as a consistent, informed, trusted, professional organisation as this allows us to build credibility, respect and ultimately positive engagements with our all stakeholders whether they be in the medical community, other charities, the media, our fundraisers and supporters or those affected by PSC and seeking support and information. In the last year, we’ve been “Punching above our weight” and working hard to create a positive perception in everything we do and communicate. We’re using a consistent style, tone of voice, look and feel. Whilst that might sound like a statement from a marketing book I believe that as we’ve refreshed and updated existing materials and the newly created communications and online presences, we’re now presenting ourselves well externally. 

Our Volunteers

Without our volunteers PSC Support couldn’t exist, they’re fantastic and over 55% of them came on board in the previous 12 months. We’ve created and advertised clear and explicit roles to help people understand what help and skills we need and the expected time and commitment levels required for each role. To our entire volunteer team I want to say a big thank you. If you have some skills, time and desire to help PSC Support then check out our volunteer page and get in touch.

Building for the long term

As you may know, we had a significant change in the Trustee team in June 2011. One of the first areas that we looked at as a new team was to ensure we had organisational sustainability and effective governance of our charity. We began by setting clear objectives as to what PSC Support exists to do, updating our constitution to better allow us to engage in decision-making and updating our registration with the Charity Commission to accurately reflect changes at PSC Support. We also defined a conflict of interest policy; this is good practice for charities and allows us to make balanced, transparent decisions around how our charity’s decisions are made and funds used. We have also identified some savings and efficiency gains in areas such as our newsletter - every penny we save is a penny we can put to further work.  In July 2011 quickly we moved to consolidate control of our online internet domains to a single one at pscsupport.org.uk which enabled us have @pscsupport.org.uk email addresses for our team and enabled a more professional way of communicating with our stakeholders. 100% reliant on donations, we’ve also looked at making it easier for our supporters to fundraise by providing materials and support to help with the fantastic events and initiatives they do for us.  To ensure we had an insight to your own perspectives, in January 2012 we ran a members’ survey to better help understand your needs and expectations of PSC Support. The feedback and insight gained from the survey continues to provide a useful reference to the decisions around what we can, should and commit to doing.

Delivering Access to Quality Information

Providing support and information is at the very heart of PSC Support’s mission and so in the last year we completely reviewed and updated our PSC information and ensured that it was medically reviewed before publishing. With all the disparate and sometime contradictory or out of date information available online, it’s vital that PSC Support is a quality, reliable source of information. That information was delivered through our new website which provides a single place to visit to access all our information, community and services including:

  • PSC Information
  • PSCers' perspectives and experience
  • Forum
  • Newsletters
  • Twitter
  • Facebook page and group
  • Help and materials for fundraisers
  • eBay shop for PSC promotional items

Partnering for Success

PSC Support clearly doesn’t operate in a vacuum and so we need to build positive partnerships and advocate for PSC. Last year we continued to promote and support the UK PSC Genetics study which provided us the welcome benefit of them promoting PSC Support on the back of their research team’s Christmas cards sent to over 3,000 participants who had donated DNA samples. We engaged with and updated our published list of contact details for UK PSC Specialists and had articles on PSC and PSC Support published in Practice Nursing and in Gastrointestinal Nursing magazines. We’ve also collaborated closely with other liver support groups and charities on areas or issues of joint interest or concerns such as Liver Allocation policy. Such collaboration is one way that PSC Support is increasingly able to advocate for the needs of those affected by PSC and begin to influence policy and decision-making that affects us all.

Extending Our Reach

Estimates on the number of PSCers in the UK range from upwards of 5,000 and to date PSC Support is only engaged with a significantly lower number. Whilst not every PSCer wants or needs access to the things PSC Support provides, there is still clearly an opportunity to connect and help more people. We made some progress to that goal with a membership growing by over 240 members and over 4,800 unique visitors to our website of which 52% were new visitors. At the end of March 2012, there were around 525 registered users and 260+ members of our Facebook peer support group.

Managing the Money

Last year our income grew year on year to just over £18,000 and our finances are in good shape for our current size and activities. However you’ll see that we want to look at increasing our provision of research funding support and so we are going to need to grow our income. This all links back to acting transparently, presenting ourselves well and delivering value to our stakeholders, many of which we hope will become fundraisers and supporters of PSC Support.

Our expenditure for the financial year 2011/12 was £10,528.84, made up from:



General and Administration Cost


Awareness and Support Activities


Research Grants


Other Items




Our income for the financial year 2011/12 was £18,086.22, made up from:



General Donations & Fund Raising


Restricted Funds


Ivor Sweigler Memorial Fund






And our total funds at year end £19,086.58 were

Total Funds


Current Account Balance


Deposit Account Balance




Next Steps

As we effectively engage with more people affected by PSC, we also find that our ability to attract the vital support of fundraisers continues to grow too. Our biggest risk and inhibitor I see to growing the work we do is linked to our ability to attract the skills, time and effort of volunteers and to maintaining engagement with them.  I believe though that there are reasons to be confident about PSC Support’s future increasing awareness and access to quality PSC-related information and support. We’re currently working on setting up a research grant programme and expect to be in a position to make more meaningful levels of financial contributions to PSC research. We will have a transparent process that links our funding support to targeted outcomes and provide feedback on performance so we can demonstrate results to our stakeholders. This is also going to help us extend our network of relationships with the medical and research community who we subsequently can call upon to support our own work.

We’ll continue to look at the ways we connect with Medical Professionals to understand their preferred method of communication, gaps in PSC information and services for patients and link those back to the appropriate materials and support we deliver.  For example, based upon some initial feedback, one idea we’re looking at is a “PSC Primer” document for GPs written by medical experts.

There is also more internal work to do around governance where we’ll be looking at risk assessment and insurance needs. This might sound rather officious but if we ensure we have a tightly, well run charity then it makes it easier to recruit volunteers, community members and ultimately Trustees and at the same time protect PSC Support which links back to our desire to  have a sustainable, robust charity for the long term.

Final Thoughts

In summary, the last year was “foundational” for PSC Support and over the next 12 months I expect us to increase our provision of research funding and activities around awareness of PSC and PSC Support within the UK medical communities.  We’re in good shape and ready to grow. If you have comments, questions or would like to get closer involved with PSC Support, do email me. I look forward to hearing from you.

Martine Walmsley

Chair of the Trustees