down but not out!
personal message from Dr David Webster, Chair, Primary
Immunodeficiency Association (PiA)
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
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 However this was withdrawn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.
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.
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.
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.
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.
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.
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.
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 .
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.
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.
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.
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.
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.
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
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
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.
best wishes to you all for a happy, rewarding and, above all, healthy
Order and Donations
you need to do next.
CANCEL your Standing Order/Donations to PiA
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.
do appreciate that you have given to PiA so generously in the past
but we do not want you to be out of pocket.
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.
from former CEO of PiA
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.
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.
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.
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.
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.
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.
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.
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.
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.
CEO and Acting Company Secretary
Messages from PiA's Trustees
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.
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
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.
I would like to wish you all a happy 2012.
McNairney , PiA Trustee, Scotland
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.
the future for a new Patient Organisation representing children
and adults with PID - can we come back bigger and better,
OF COURSE WE CAN.
Hennessy, PiA Trustee, Northern Ireland
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.