PiA down but not out!

A personal message from Dr David Webster, Chair, Primary Immunodeficiency Association (PiA)

It is with great regret that I have to tell you that the Board of Trustees has decided to close the PiA. This process has already started and should be more or less complete by the New Year. This decision was not taken lightly and the CEO, staff and Trustees having worked hard during the past year to raise money and keep the organisation alive.

As many of you will have read in the last issue of inSIGHT , PiA sustained a sudden and unexpected reduction in its income when the Jeans for Genes (J4G) trademark owner, CGDRT, withdrew its licensing agreement to end a successful 15 year relationship with its three founding partner charities - a partnership that provided funds for many important PID research projects and support activities over this period. Despite this initial financial blow we were reassured that revenue from the J4G campaign would still be received for three years through a transitional agreement. However this was withdrawn by CGDRT at the eleventh hour.

Regrettably, and despite the considerable fundraising and other efforts made by our CEO, staff, Trustees and some of our members, we were not left enough time to downsize our organisation (office premises and staff) and raise additional funds to survive free of financial risk.

Against this background, and in accordance with our duties as financial guardians of PiA, the Trustees felt they had no alternative but to close the Charity. Fortunately the organisation will be wound up without us being formally insolvent, the expectation being that there will be no outstanding debts.

The good times

When I was a young Consultant Immunologist some 35 years ago I realised the importance of a Patient Support group for Primary Immunodeficiency and, with a few dedicated patients, set about forming the HGG (Hypogammaglobulinaemia) Society which then developed into the PiA in 1990. Right from the start these support organisations for PID patients have on many occasions been crucial in helping to maintain a high standard of care throughout the UK by organising awareness campaigns and influencing decisions on potentially damaging cuts to services.

Thanks to the great success of the J4G campaigns during the 1990s, and then to some large grants from industry, the PiA was able to fund some important research in the UK that has since blossomed; some memorable achievements were early work on gene therapy for life threatening immunodeficiency in infants and children, fostering the hunt for defective genes causing CVID, and a thorough analysis of the psychological problems affecting many PID patients, leading recently to some useful therapy.

Thanks

It is appropriate at this point to acknowledge our debt to Professor Roland Levinsky who, with David Watters our first CEO, launched the PiA and saw its rapid expansion during the 1990s. Subsequent Trustee Boards have worked hard to keep track of and represent PID sufferers as the number of UK specialist clinics rose from a handful to the 35 we have today.

We have always worked closely with the Consultant Immunologists and Specialist Nurses who treat most of our members, and many times have appreciated guidance from members of our Medical Advisory Panel.

Despite uncertainties over the falling level of J4G revenue during the past few years, and the time consuming and difficult negotiations with the J4G Charity, the PiA has remained constructive and active right until the end. Successes in recent years include the prioritising of PID patients to receive immunoglobulin therapy, achieved through combined pressure on the English and Scottish Departments of Health from a group of eminent UK immunologists and our CEO. Other advocacy successes included the reinstatement of the PID clinic in Southampton and the appointment of a full-time specialist nurse in Glasgow .

We have also been involved in publishing new guidelines for the treatment and management of primary antibody deficiency, the production of a 'lay' guide to PID for Health Service Managers and a recent PID awareness campaign, which included the first parliamentary reception on PID held in May this year and hosted by PiA.

During the past few months we have helped to raise the profile of Hereditary Angioedema (HAE), particularly within Accident and Emergency centres, and are providing affected patients with special ‘Alert Cards’ to enable rapid treatment of acute attacks.

These successes have been due to the dedication of our CEO for the past seven years, , supported by all our staff over the past years - most recently Nichola, Andrea, Kate and Helen - as well as our long standing Board members, Rae McNairney, Jose Drabwell, Kathryn Hennessy and our Treasurer, Andrew Moore who must have had some sleepless nights over the past year! Some of these express their sadness for the outcome below.

We have also enjoyed long and substantial financial support from pharmaceutical companies, without which we would have been in difficulty much earlier. Our sincere thanks to them. Finally we should not forget you - the many members who have raised or donated money to the PiA. Some of your recent achievements are highlighted in the final issue of inSIGHT, which will be with you shortly . Your efforts have not been wasted and have enabled the PiA to play a significant part in maintaining a high standard of care for PID patients in the UK . We thank you all for your impressive support and fundraising efforts over the past 21 years.

The Future

All of us at PiA are passionate about the need for a national organisation to represent patients with PID. The PiA currently has about 2,200 members and we are doing our best to encourage the development of an alternative organisation as soon as possible. It is ironic that we find ourselves in this situation at a time when the NHS will inevitably be cutting costs and rationalising services. We are already seeing some closures of PID clinics for adults and national representation by a patient group will probably be needed to prevent unplanned and disorganised reductions in services.

Some dedicated and concerned members are already stepping forward to launch a new organisation, and I hope this will be active by summer 2012 so that it can influence the newly appointed Commissioners who will decide on the future of services for rare conditions like Primary Immunodeficiency.

We will retain the confidential database of PiA member’s addresses and other contact details in a secure environment for a period of six months in the hope and expectation that we will contact you again before June 2012 with information about the launch of a new organisation.

Finally, I encourage members to start a dialogue with their local Clinical Immunologists and Specialist Nurses on how best to identify suitable people to represent the interests of PID patients in your region, so that they are ready to play a part in any new national organisation which might emerge. Having reached the age of 21, this may turn out to be a good time for the PiA to re-invent itself.

My best wishes to you all for a happy, rewarding and, above all, healthy 2012

Dr. David Webster

Chair

Primary Immunodeficiency Association

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Standing Order and Donations

What you need to do next.

Please CANCEL your Standing Order/Donations to PiA

As PiA will be closing its doors today, 31 December 2011, and closing its bank accounts shortly after this, we ask all those members who have given PiA donations over the years by standing order/donation to kindly contact their banks and CANCEL these.

We do appreciate that you have given to PiA so generously in the past but we do not want you to be out of pocket.

If there are any funds in the Bank left over when PiA has met its liabilities these will be put towards a PID related research or other project, as set out in our Memorandum and Articles of Association.

Thank you.

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Message from former CEO of PiA

Reflections and thanks

As many of you know I left PiA some months ago, having been Chief Executive with the Charity for more than seven years. However the Trustees have asked me to oversee the closure of the Charity, following the recent decision to close the doors on 31 December - and I have agreed to do so. Needless to say this is a very sad time for all of us at PiA. We have worked extremely hard to find alternatives to closure and to raise additional income that would have compensated for the loss of the Jeans for Genes annual grant. But, in the end, the amounts were just too large and the Trustees rightly felt that it was better to close the Charity without liabilities than struggle on with the distinct possibility of insolvency in a matter of months.

As the Chairman points out in his lead article we are all passionate about PiA and the need for a national charity to represent the interests of children and adults with primary immunodeficiencies in the UK - particularly in these turbulent and uncertain times. Over the years the role of PiA has changed. In the early days there was a hunger for any information on PID and a desperate need for clinics with the expertise and specialists to diagnose and treat PID patients.

Today, information is available through a range of channels, often at the press of a button. Thanks to the pioneering work of the PiA there are also PID clinics in most areas of the UK - providing an excellent level of patient care and understanding of these complex disorders.

Today, in a forever changing healthcare environment, a patient organisation is needed to ensure PID is not marginalised or forgotten when important decisions are being made at national and local level about the commissioning and provision of specialised services for rarer disorders with relatively expensive (in NHS terms) treatments. In other words, a national patient organisation with a strong and persuasive voice will ensure PID is high on the commissioning agenda and the treatment and care you rightly take for granted is protected.

That is why it is important to see a 'new' PiA emerge from the demise of its predecessor and, hopefully, within months rather than years. We remain optimistic that this will happen but, as ever, your support for such an enterprise will be crucial.

On a personal note I would like to use this message to you, our members and supporters, to thank my former staff for all the hard work they put in to achieve a number of notable successes on your behalf over the past few years. David refers to some of these in his article but I would single out the hard fought and lengthy battle with the Department of Health and NHS to ensure PID patients are prioritised for immunoglobulin treatment as a particularly significant achievement.

We have also received considerable encouragement, advice and support from the medical professional community that care for PID patients and in particular I would like to express our gratitude to those immunologists and specialist nurses who have recommended joining PiA to their patients; volunteered and participated in our activities and fundraising programmes; invited PiA to sit on important decision-making committees; and given us much valued advice on a range of issues affecting PID patients and their welfare.

I would also like to thank our friends and 'partners' in the pharmaceutical and medical device companies for the financial and other support they have given PiA over the years. Without their involvement and generosity a relatively small charity, such as ours, would not have been able to achieve so much.

Most importantly I would like to thank you, our members and supporters, for putting your faith in PiA through your volunteering and fundraising efforts and for supporting the events and activities we organised over the years. My wife, Dale, and I will never forget our conversations with many of you at patient meetings from Liverpool to Plymouth and Stirling to Belfast, or the sight of our PID kids having a wonderful 'first holiday from Mum and Dad' experience on a boat in Berkshire or rock climbing in the Lake District. We are proud and honoured to have had this opportunity to help many of you through difficult times and we hope that PiA has been able make a difference to how you feel about your PID and your lives in general. If so, there can be no greater reward.

Former CEO and Acting Company Secretary

Primary Immunodeficiency Association

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Messages from PiA's Trustees

Jose Drabwell, Trustee

For the last twelve years I have been involved as a trustee in the PiA, representing patients with a primary immunodeficiency on a national and international level. It is therefore with great sadness to be working on the closure of this organisation.

I would like to thank personally all those physicians who have looked after us, our children, parents, partners and nurses who have cared for us, the pharmaceutical companies that have provided valuable financial support and of course all the members of the PiA and their families and friends who have supported this organisation over so many years. It has been an honour for me to have worked with you all.

Now is the time that we need to have a strong patient organisation especially in view of the economic restrains that will inevitably lead to cuts in services. We need to have one voice representing all our patients in the United Kingdom, especially in those areas where PIDs are not a priority.

Finally I would like to wish you all a happy 2012.

Rae McNairney , PiA Trustee, Scotland

During my time of involvement with PiA (and previously HGG Society) our family has seen the patient pathway for PID patients improve tremendously throughout the UK and I believe this is in part down to a Patient Organisation who worked tirelessly to help achieve this aim.   I have had the pleasure of meeting some wonderful people over the years and would like to take this opportunity to wish everyone very good health in the future.

Regarding the future for a new Patient Organisation representing children and adults with PID  - can we come back bigger and better, OF COURSE WE CAN.

Kathryn Hennessy, PiA Trustee, Northern Ireland

I joined the HGG Society 22 years ago and at that time when my son was diagnosed with a rare immune deficiency there wasn't any literature to help us know what we were dealing with.  Today this and so much more information is at our finger tips, thanks to the work of the PiA.
 
I would like to thank all the people who have supported us by fundraising and of course, our little Group in Northern Ireland , who have been doing this with such success for 22 years.
 
Best wishes to all.

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