Inaugural North West Immunology Patient Day
Saturday 15th November 2014 09.30 - 16.30
Lancaster Suite, Haydock Park Racecourse, Newton-le-Willows, Merseyside, WA12 0HQ
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Who
Suzanne Fox
(Drew)
Title
Chair
Tomaz Garcez
Chair
Talk
Bio
Photo
I am better known as Aimee Drew’s mum; in fact that is how I
have been known for 22 years. Aimee was my beautiful
daughter who tragically died a week before her sixth birthday.
Aimee had an undiagnosed primary immunodeficiency and at
that time there were no specialist paediatric immunology
services in Manchester. After Aimee’s death, I worked tirelessly
to raise funds to pay for a consultant paediatric immunologist to
run a monthly clinic at the Royal Manchester Children’s Hospital.
By lobbying MPs, hospital trust directors and managers, and
with the help of other parents, I then managed to secure hospital
trust funding for a permanent consultant paediatric immunologist
to run clinics twice a month. As a wonderful, lasting legacy to
Aimee, this service has now expanded to employ two full-time
consultant paediatric immunologists and a full-time paediatric
immunology nurse. I was a trustee of the Primary
Immunodeficiency Association (PiA) for six years, a volunteer on
the PiA’s telephone helpline service and a mentor for IPOPI
youth members. I am a qualified counsellor and young people’s
counsellor but now work full time as a child protection officer in a
large secondary school. My most fulfilling role though is as mum
to my two handsome sons. I am passionate about helping
people, especially children, and I am very excited to be a part of
this new PID community.
Tomaz Garcez graduated from Aberdeen University in 1997 and
completed postgraduate general professional training in Cardiff
(adult medicine) and higher specialist training in Bristol
(immunology and general internal medicine). He was appointed
to Central Manchester University Hospitals NHS Foundation
Trust (CMFT) as consultant immunologist in July 2011. Tomaz
leads the clinical and laboratory immunology service in CMFT
and is chair of the North West Adult Immunology Network
Group. Tomaz is a member of the UK Primary Immunodeficiency
Network Steering Group, the PID UK Medical Advisor Panel and
holds a senate seat on the immunology and allergy Clinical
Reference Group (NHS England).
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Who
Dr Tracy Briggs,
Clinical Lecturer,
Manchester
Centre for
Genomic
Medicine, St
Mary’s Hospital
Title
‘Genetics and the
immune system’
Drew Tyne
‘PID/HAE and me’
(1)
Talk
imm pt day nov
2014.pptx
Bio
Dr Tracy Briggs is clinical lecturer in Genomic Medicine. She
works 50% of the time in the Genomic Medicine Department at
the Central Manchester NHS Foundation Trust and 50% of the
time at The University of Manchester. Dr Briggs has trained in
paediatrics, at Alder Hey Children’s Hospital, Liverpool and St.
James Hospital, Leeds and in genetics at St. James Hospital,
Leeds and in Manchester. Her research interest is
immunogenetics, particularly innate and autoimmune genetic
disorders.
Photo
Patient representative for London (PID UK)
I was diagnosed with CVID back in 1996 after becoming critically
ill and straight away was put onto immunoglobulin replacement
Haydock Living_With_PID.pptx therapy. Since then, I have been to university lived in two
different cities changed immunoglobulin products more times
than I can remember as well as infusion methods leading me to
now; doing my own infusions at home via the subcutaneous
Haydock-Living_With
method, and I love it. Via the support from my Immunology team,
_PID - V3.doc
at the Royal Free Hospital, and my amazing wife, I work full time
as a Graphic Designer, as well as doing activities like running,
rollerblading and American football. I'm excited at helping PID
UK, as I know the struggles a patient can go through, so by
using my experiences and knowledge I want to help patients
take control over their condition so they don’t feel limited by it. I
just want to let you know, that this diagnosis isn’t the end of the
world. It is the beginning of an adventure to do the things you
couldn’t have done before. Keep well.
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Who
Paul Mitchell
Title
‘PID/HAE and me’
(2)
Kevin White
‘PID/HAE and me’
(3)
Talk
Bio
Patient representative from Preston
Paul Mitchell is 54 years old and lives in Lancaster. He was
diagnosed with hypogammaglobulemia in 2009 after recurrent
infections from 1995 onwards involving multiple hospital
admissions. Mr Mitchell is a software developer and since his
diagnosis work has taken him across Europe and to India, he
has managed his immunoglobulin infusions around these trips.
He has 2 young children and self infuses at home as he finds
this fits in well around family and career.
Photo
Patient representative from CMFT
I've been living with the symptoms of Hereditary Angioedema
(HAE) for 40 years. Both my children, Holly (22) and Conor (19)
have HAE and I'm sure, like many patients with rare diseases, I
have many stories of the challenges faced before diagnosis. I've
been a Macmillan cancer nurse specialist for many years,
working in the North West. Away from work, I remain in a male
mid-life crisis, riding a motorcycle through the Yorkshire Dales
whilst contemplating what tattoo to have next.
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Who
Dr Bill Egner,
Consultant
Immunologist,
Sheffield Teaching
Hospitals NHS
Trust, Honorary
Senior Clinical
Lecturer at the
University of
Sheffield
Title
‘NHS England and
immunology
services’
Talk
Bio
Photo
Please see link
Bill is a Consultant Immunologist at the Sheffield Teaching
talk not available Hospitals NHS Trust and an Honorary Senior Clinical Lecturer at
the University of Sheffield. While studying Medicine at Bristol in
the 1980s he intercalated a BSc in Cellular Pathology and was
taught by Epstein and Achong of EBV fame just at the time that
AIDS was recognised (and before HIV discovered). This sparked
a life-long interest in the rapidly emerging clinical science of
Immunology. A couple of years later, while doing junior medical
rotations in Bristol, he was amazed to meet a doctor who applied
this knowledge to patients in the form of Tim Wallington, one of
the first major wave of Immunology clinicians – this was the first
time Bill had ever realised there might be a medical career in this
specialty.
Having decided to give it a go, he underwent post-graduate
training in Immunology in Oxford, New Zealand and Cambridge.
Some years later, he is still trying to keep up with the rapid
advances in applied and translational immunology of benefit to
patients and apply them in clinical practice.
In his spare time he collected a PhD on Dendritic cells, set up a
Clinical Immunology and Allergy Service in Sheffield, is Director
and Scheme Organiser of a large European Quality Assurance
Organisation in Immunology (UKNEQAS - UK National Quality
Assessment Service in Immunology, Immunochemistry &
Allergy) and is Director of one of the Immunology Protein
Reference Units of the national Specialist Assay Service in
Sheffield. He has published widely on the clinical and laboratory
aspects of immunology and allergy and occasionally appears as
committee chair, secretary or member on the committees and
working parties of the Royal Colleges of Physicians and the
Royal College of Pathologists and those of professional bodies
in Immunology and Allergy. Despite this, he does claim to have a
life and other interests outside of immunology...
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Who
Emily Carne,
Advanced Nurse
Practitioner &
Lead CNS
Immunology &
Allergy,
Immunodeficiency
Centre for Wales,
University Hospital
of Wales, Cardiff
Title
‘New Horizons in
Immunoglobulin
Therapy’
Talk
Bio
Photo
Emily trained as a nurse in the West Midlands before moving to
Cardiff, she has worked on a Hepatology & Gastro Unit, a
specialist Infectious Disease Unit, Cardiac Intensive Care and as
New Horizons in
Immunoglobulin Therapya (2).pptx
wound healing nurse specialist. She moved to Immunology in
2001 and in 2006 she completed her Masters in Health Science
(Immunology & Allergy focus) at Birmingham University and
gained her Advanced Nurse Practitioner qualification.
Maxine Abberley
& Claire Williams,
Home care team,
Central
Manchester
Foundation Trust
‘From hospital to
home – your
prescription journey ‘
Maxine
I have worked in Pharmacy for 20 years. Prior to this I worked
for a subsidiary company of BOC. I started my NHS journey at
Your Prescription
Journey 15.11.14 HAYDOCK
PARK IMMUNOChildren’s
DAY.pptx Hospital 1994 based in Pharmacy in
the Manchester
a procurement post. I was promoted within this role after gaining
knowledge, experience and increasing my responsibilities with
more financial duties. I became involved in Paediatric Homecare
whilst in this position.
Claire
I have worked in pharmacy for 9 years, starting as a pharmacy
assistant at North Manchester General.
I trained for 2 years at Fairfield General Hospital and once
qualified moved to Wythenshawe Hospital.
I have been a pharmacy technician for 6yrs, and worked in the
homecare team for 3 years, and after gaining in experience and
knowledge became a senior member of the team.
I enjoy travel and am learning to speak Spanish. I also love to
keep fit and healthy and regularly go to the gym.
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Who
Craig Simon,
Immunology
Clinical Nurse
Specialist, Royal
Liverpool &
Broadgreen
University
Hospitals NHS
Trust
Title
‘Immunisations,
travelling and
insurance’
Edna Babbs
‘Immunisations,
travelling and
insurance’
Talk
Bio
Craig Simon is Immunology Nurse Specialist at the Royal
Liverpool & Broadgreen University Hospitals NHS Trust.
Photo
Immunisations,
travelling and insurance.pptx
He qualified
as a registered nurse with a first level Bachelor of
Nursing degree from the University of Liverpool in 2006 and
worked in Haematology before specialising in Immunology in
February 2010.
Craig also currently holds the position of Secretary of the
Immunology and Allergy Nurses Group (IANG) and sits on the
UK Primary Immunodeficiency Diseases (UKPID) Registry
Committee.
Patient representative from SRFT
Edna is a patient with CVID diagnosed in 1991 and went onto
home therapy in 1994. She had IV immunoglobulin at home for
many years and recently changed to subcutaneous therapy. She
has travelled all over the world accompanied by her husband
Dennis and her immunoglobulin
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Patient groups:
PID UK
UK PIPS
HAE UK
www.piduk.org
www.ukpips.org.uk
www.haeuk.org
Organisers: Alex Farragher (CMFT), Craig Simon (RLBUHT), Vivien Doran-Johnson (SRFT)
Chairs: Suzanne Drew (PID UK) & Tomaz Garcez (CMFT)
Meeting sponsors: PID UK, CSL Behring, Shire Pharmaceuticals, Baxter Healthcare, Octapharma, Amdel Medical, BPL
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