Issue 102

July 2005 ISSUE NUMBER 102
UKTS launches ground-breaking
new publication
– Standards for the Clinical Care of Children and Adults
with Thalassaemia in the UK
contents
14th June 2005 was one of the most
important dates in the UKTS calendar for a
long time. Our second national conference
for doctors who treat thalassaemia patients
(Thalassaemia in the 21st Century – A
National Standard of Care, King’s Fund,
Cavendish Square London W1) took place;
an event specifically designed to coincide
with the release of our new Standards for
the Clinical Care of Children and Adults
with Thalassaemia in the UK.
This publication was commissioned
in 2002 after our first national doctors’
conference; when it became apparent that
many doctors felt, as we did, that there
were significant variations in the quality
of treatment available to thalassaemics
in the UK. This document provides
comprehensive clinical guidelines and
performance indicators for the monitoring
of treatments available and outcomes. It
is the first set of clinical guidelines to be
published in the UK relating to a condition
which does not affect the indigenous
population. The document has been
welcomed by the Department of Health
and described as “excellent and timely” by
the Royal College of Pathologists. Although
the book has been designed to provide
guidelines for doctors, we also hope that
it will be a means of showing thalassaemia
patients what standard of care they should
be receiving and encouraging them to seek
it. For this reason the book will be available
free to thalassaemia patients and parents
on application to the UKTS office; as well
as being distributed free to healthcare
professionals throughout the UK. Contact
us today if you would like a copy.
This project, which took three years
to complete, has taken up many hours,
days and weeks of work from all involved.
Everyone in the Writing Group has worked
extremely hard and we are very grateful
to all the doctors who gave up their time
to help us. Particular thanks are owed to
Dr Anne Yardumian, Dr Paul Telfer and Mr
Matthew Darlison, who gave up many of
their all too rare leisure hours to ensure
that the document was finished on time.
Our grateful thanks to all the Writing
Group, listed below.
• Dr Anne Yardumian, Consultant
Haematologist, North Middlesex
University Hospital (Chair of Writing
Group)
• Dr Paul Telfer, Senior Lecturer in
Haematology, St Bartholomew’s & The
Royal London Hospitals NHS Trust,
Queen Mary, University of London
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A word from our President . . . . . . . . . . . 2
News from around the world. . . . . . . . . 8
UNITED KINGDOM
THALASSAEMIA SOCIETY
Latest News. . . . . . . . . . . . . . . . . . . . . . . . . 3
Patient News. . . . . . . . . . . . . . . . . . . . . . . 9
A Charity Organisation
Registration Number: 275107
Medical News . . . . . . . . . . . . . . . . . . . . . . 4
Office News. . . . . . . . . . . . . . . . . . . . . . . . 13
19 The Broadway
Southgate Circus, London N14 6PH
Telephone: 0208 882 0011 • Fax: 0208 882 8618
Email: [email protected] • www.ukts.org
A word from our President
Dear Friends,
This issue of TM introduces
a brand new UKTS publication –
the first Standards for the Clinical
Care of Children and Adults with
Thalassaemia in the UK. This book
has been one of our “invisible”
UKTS projects for the last three
years. Of course, we could never
have produced a document like this
without the help of the writing group,
chaired by Dr Anne Yardumian,
Consultant Haematologist at the
North Middlesex Hospital. Thank you
again to everyone who gave up their
time to help us with this project.
At UKTS we are in contact with
patients from all areas of the UK,
some of them living very far from
the nearest hospital which has a
thalassaemia specialist. Obviously
those centres which treat a large
number of thals have excellent
services and their staff have
developed a high level of expertise,
but this cannot be the case in a
hospital where they only see one
or two thals. The Standards can be
used by any hospital to provide clear
guidelines for the management of
www.ukts.org
thalassaemia and its complications.
By making the document available
to patients as well as healthcare
professionals we hope to show them
what level of service they are entitled
to expect. If you would like a copy,
you simply need to call or email our
office.
The book was launched at our
second national conference for
doctors involved in the treatment
of thalassaemia on 14th June 2005
at King’s Fund in Cavendish Square,
Central London. We were privileged
to welcome over 120 guests, some
of whom had literally travelled
from the other side of the world
to attend the conference. It was
an inspiring day and a pleasure to
meet so many people dedicated to
improving the treatment available to
thalassaemics.
This has been a very busy time
for UKTS, with the final stages
of producing the Standards,
organising the conference and also
managing to send delegations as
far away as Taiwan and Malaysia,
to collect information on behalf of
the Thalassaemia International
Federation. You will be able to read
about these visits in this issue and
the next.
May I wish everyone a happy and
restful summer and to those of you
who will be travelling, a safe and
pleasant journey.
Until the next issue,
Mike Michael
President, UK Thalassaemia Society
Aims &
Objectives
of UKTS
■ The relief of persons
suffering from thalassaemia.
■ The promotion and coordination of research
in connection with
thalassaemia.
■ To educate people on the
problems of thalassaemia.
■ To offer counselling to
sufferers and carriers.
■ To bring together patients,
their families and wellwishers to exchange ideas
and information.
■ To raise by any legal means
the funds required for the
above activities.
The UKTS
Management
Committee
Mike Michael
President
Menuccia Tassone
Vice-President
Costas Kountourou
Secretary
Olga Demetriou
A Secretary
George Constantinou Treasurer
Philip Agathangelou
A Treasurer
Maria Gavriel
Committee
Chris Sotirelis
Committee
Andreas Yiannikou
Committee
latest news
Continues from page 1
• Mr George Constantinou, patient
representative, UK Thalassaemia Society
• Dr Phil Darbyshire, Consultant Paediatric
Haematologist, Birmingham Children’s
Hospital
• Mr Matthew Darlison, Senior Research
Fellow Clinical & Applied Bioinformatics,
University College London Centre for
Health Informatics & Multiprofessional
Education (CHIME)
• Dr Sally E Kinsey, Consultant Paediatric
Haematologist, St James’s University
Hospital, Leeds
• Mrs Elaine Miller, Co-ordinator, UK
Thalassaemia Society
• Professor Bernadette Modell, Emeritus
Professor of Community Genetics,
University College Hospital London &
UCL Centre for Health Informatics &
Multiprofessional Education (CHIME)
• Dr Melanie Pollitzer, Associate Specialist
in Paediatrics, Royal Berkshire Hospital,
Reading
• Professor John B Porter, Professor
of Haematology, University College
Hospital, London
• Sr Emma Prescott, Thalassaemia Nurse
Specialist, Whittington Hospital, London
• Mrs Katerina Read, patient
representative, UK Thalassaemia Society
• Dr Christos Sotirelis, patient
representative, UK Thalassaemia Society
• Dr Rachel Spector, Clinical Psychologist,
Birmingham & Solihull Mental Health
Trust
• Dr Christine Wright, Consultant
Haematologist, Sickle Cell &
Thalassaemia Centre, City Hospital,
Birmingham
Thalassaemia In The 21st Century
– A National Standard Of Care
•M
anagement of bone disease – Dr
Ersi Voskaridou, Laikon Hospital Athens
• S exual development & fertility
– Professor Pierre-Marc Bouloux, Royal
Free Hospital London
•P
re-implantation diagnosis in
the UK – Dr Mary Petrou, Regional
Haemaglobinopathy Genetic Centre
(Perinatal Centre) UCLH
•U
pdate on the National Screening
Programme – Dr Allison Streetly,
Programme Director
•B
one marrow transplantation
– Dr Phil Darbyshire, Birmingham
Children’s Hospital
•T
he patient’s perspective – Professor
Bernadette Modell, CHIME
•G
oals & monitoring in chelation
therapy – Professor Renzo Galanello,
University Hospital, Cagliari, Sardinia
Our second national conference for doctors
who treat thalassaemia patients took
place on 14th June 2005 at King’s Fund,
Cavendish Square, London W1.
The conference generated enormous
interest from the outset. Registrations
came in from all parts of the UK and some
from much further away, with visitors from
China and Taiwan among the delegates.
Long before 14th June there were no
further places to be had; and on the day
there was not a spare seat in the hall.
The opening ceremony was conducted
by our President Mike Michael and the Rt
Reverend Dr John Sentamu, Bishop for the
Diocese of Birmingham and Chair of the
NHS Screening Programme for Sickle Cell
& Thalassaemia (we are delighted to report
that since the conference, Bishop Sentamu
has been appointed Archbishop of York, so
taking up the second highest office in the
Church of England).
Professor Sir David Weatherall was
to have presented a global view of
thalassaemia in the 21st century, but sadly
was unable to be with us due to illness. Dr
Kate Ryan of Manchester Royal Infirmary,
Co-Chair of the conference organising
committee, instead opened the conference
with an overview of thalassaemia
treatment in the UK. Then followed the
keynote address by Dr Anne Yardumian
of the North Middlesex Hospital, which
presented the new Standards for the
Clinical Care of Children and Adults
with Thalassaemia in the UK. Copies
of the new document were included in
the conference packs distributed to the
delegates. Further presentations followed
on:
Thalassaemia Matters
...continuing the fight against Thalassaemia
The Rt Rev Dr John Sentamu, Bishop for the
Diocese of Birmingham, opens the conference.
Dr Christos Sotirelis of UKTS and Dr Kate Ryan
of Manchester Royal Infirmary, co-chairs of the
conference organising committee.
Delegates at the conference
Continues on page 4 ➡
latest news
Continues from page 3
•T
2*MR of myocardial iron & chelator
efficacy – Professor Dudley Pennell,
Royal Brompton Hospital London
• ICL670 & other new chelators –
Professor John Porter, University College
Hospital London
N.B. If anyone would like copies of the
slides/abstracts used in the presenta­
tions, please contact the UKTS office.
Dr Anne Yardumian, Chair of the Writing
Group, presents the new “Standards for the
Clinical Care of Thalassaemia”
•O
ptimal use of desferrioxamine –
Dr Bernard Davis, Whittington Hospital
London
•D
eferiprone alone or in combination
– Dr Paul Telfer, The Royal London
Hospital
The evaluation forms given in by the
doctors at the end of the conference were
vastly encouraging and made us feel that
the hard work which went into organising
the conference was very worthwhile.
75% of respondents found the meeting
highly relevant to their educational
needs, with the remaining 25% finding
it mostly relevant. 64% rated the quality
of education offered as excellent and the
remainder rated it as good. Even more
significantly, a staggering 93% those who
submitted an evaluation stated that after
attending the conference they would
modify their practice; 39% saying that their
practice would be modified in a major way.
Thank you to all those who gave up
their time to give presentations and/or
chair sessions; and helped us to make the
conference a success. Particular thanks go
to the conference organising committee
– Dr Kate Ryan, Dr Christos Sotirelis,
Prof Pierre-Marc Bouloux, Mr George
Constantinou, Mrs Elaine Miller, Prof John
Porter, Dr Paul Telfer, Dr Adrian Williams.
On the evening of 14th June UKTS
hosted a celebration dinner at Lemonia
restaurant in Central London to thank
those who contributed to the Standards
book and the conference.
medical news
Gene Therapy
for the Haemoglobinopathies:
Current Status and Future Trends
Summary of a
presentation
given by
Dr Michael
Antoniou at the
UKTS AGM, 10th
April 2005
As I’m sure most
of us know, at the
moment a bone
marrow transplant
from a tissue
matched donor
(e.g. a brother
www.ukts.org
or sister) offers the only hope for a cure
of a haemoglobinopathy (thalassaemia
or sickle cell disease). However, within
the last 5 years and especially the last 24
months, there have been some major
developments, which suggest that gene
therapy for thalassaemia or sickle cell
disease may at last be an option in the not
too distant future.
How is gene therapy for the
haemoglobinopathies envisaged to take
place?
All of our different types of blood cells
medical news
Continues from page 4
including the red blood cells, which are
faulty in thalassaemia or sickle cell disease,
are produced from what are known
as “stem cells” that are present within
our bone marrow. So the idea of how
thalassaemia or sickle cell disease can be
cured by gene therapy is quite simple; if
you correct the genetic defect in the bone
marrow stem cells of the person with
either thalassaemia or sickle cell disease,
then they will now produce normal rather
than defective red blood cells for the rest
of their life! Technically, gene therapy for
β-thalassaemia or sickle cell disease will
take place by what is known as an “ex
vivo” procedure, which is basically a threestep process:
Step 1: Bone marrow is removed from the
person with β-thalassaemia or sickle cell
disease and the stem cells within the bone
marrow are isolated or purified.
Step 2: The therapeutic gene unit
consisting of a normal functioning copy of
the β-globin gene is then introduced into
these isolated bone marrow stem cells.
During the few days that this takes place,
the person being treated undergoes a mild
form of chemotherapy to partially destroy
their diseased bone marrow, a procedure
known as “conditioning”.
Step 3: The now corrected bone marrow
stem cells are returned to the person
from where they came from. Since the
chemotherapeutic conditioning has largely
destroyed the diseased bone marrow, the
gene therapy corrected bone marrow stem
cells are able to readily establish themselves
within the vacated bone marrow spaces.
As their bone marrow stem cells now
contain a normal functioning copy of the
β-globin gene, they will produce normal
red blood cells rather than those deficient
in β-globin and abnormal haemoglobin as
before they were treated.
Key features to note about this
procedure are (i), you are correcting the
person’s own bone marrow stem cells and
therefore you do not need a donor as
in the case of a bone marrow transplant
and (ii), you are not correcting the faulty
β-globin genes that the person with
either β-thalassaemia or sickle cell disease
has inherited; you are simply adding or
introducing a normal functioning extra
copy of the β-globin gene into their bone
marrow stem cells. As a result any person
with either β-thalassaemia or sickle cell
disease is treatable by this ex vivo gene
therapy procedure, as long as their bone
marrow is in good shape!
Thalassaemia Matters
...continuing the fight against Thalassaemia
The β-globin therapeutic gene unit
We have known for some time the
components that would need to be
included to make an efficient proper
functioning, therapeutic β-globin gene
unit. Firstly, we of course need a normal
copy of the β-globin gene, which carries
the information for β-globin protein, which
in turn is part of normal haemoglobin.
Secondly, we need what are known as
genetic control or regulatory elements.
These are basically elements that will
allow the β-globin gene to be powerfully
“switched-on” in the red blood cells to
produce enough β-globin protein to be
of therapeutic value. The β-globin gene
genetic control element or “on-switch”
is known as the “locus control region” or
“LCR”. We know from research conducted
a number of years ago that a LCR-βglobin gene combination delivered to
bone marrow stem cells will produce the
minimum 25% of normal levels of β-globin
protein that is sufficient to make someone
with β-thalassaemia independent of having
to have blood transfusions.
Advances in the delivery of the βglobin therapeutic gene unit
It is perhaps obvious from what we have
discussed so far that we have known how
to bring about a cure for β-thalassaemia
or sickle cell disease by gene therapy for
some time. The major obstacle, which
has prevented us from realising this goal,
has been the lack of a gene delivery or
“vector” system that could efficiently
introduce the therapeutic LCR-β-globin
gene combination into bone marrow stem
cells. However, in the year 2000 Professor
Michele Sadelain in New York (USA) finally
achieved a major breakthrough in this area.
Professor Sadelain adapted a vector based
on the human immunodeficiency virus
(HIV), which under normal circumstances
causes AIDS. Perhaps ironically, one can
convert this otherwise dangerous virus into
a potential lifesaver by removing all the
virus disease-causing genes and replacing
them with your therapeutic gene unit,
which in our case is the LCR-β-globin
gene combination. Professor Sadelain
showed for the first time that an HIV-LCRβ-globin gene vector could be used to
efficiently infect bone marrow stem cells
and completely cure the disease condition
in a mouse model of severe β-thalassaemia
intermedia. Within the last 12 months
groups in North America led by Professors
Punam Malik, Connie J. Eaves and Keith
Humphries have published reports where
they describe using similar HIV-LCR-βglobin gene vectors to completely correct
the genetic defect in human bone marrow
stem cells obtained from people with βthalassaemia major. These groups showed
that when these corrected human stem
cells are introduced into mice, these
animals survive and live very well with this
human bone marrow transplant, which
further demonstrates the therapeutic
potential of this procedure if repeated in
human subjects. In addition and not too be
forgotten, HIV-LCR-β-globin gene vectors
have also been shown by the group of
Professor Tim Townes in the USA to be
effective at curing sickle cell disease again
in a mouse model experimental system.
Finally, based on work sponsored by
UKTS in my laboratory a few years ago,
we have built and tested our own version
of the HIV-LCR-β-globin gene vector. In
collaboration with Professor Giuliana Ferrari
of the Telethon funded gene therapy
institute in Milan (Italy), we have shown
that our HIV-LCR-β-globin gene vector is
just as effective as other versions at curing
the severe β-thalassaemia intermedia mice.
Experiments with human bone marrow
stem cells from people with β-thalassaemia
major are currently underway. However,
importantly our data to date suggests that
the much simpler (and smaller) design of
our HIV-LCR-β-globin gene vector gives it
two very significant advantages over those
of other groups. Firstly, it is much easier
to produce, which is not an insignificant
consideration when you are contemplating
scaling up manufacture of the vector for
use in human clinical trials. Secondly, the
smaller size of our vector means there is
more space remaining within the virus to
allow us to add other genetic components
that would improve the efficacy of our
vector to the point where we thought it
Continues on page 6 ➡
medical news
Continues from page 5
would be feasible to go into the clinic to
treat people.
How does the HIV-LCR-β-globin
gene vector work and are there any
associated problems?
The HIV-LCR-β-globin gene vector has the
property of inserting its genetic material
(the genes that it is carrying) into the
DNA of the bone marrow stem cells that
it will be used to infect. Consequently, as
these bone marrow stem cells divide and
grow they retain their copy of the HIVLCR-β-globin gene vector since this is now
part of their genetic makeup. This is why
the genetic correction of bone marrow
stem cells of people with β-thalassaemia
or sickle cell disease with the HIV-LCR-βglobin gene vector, in principle will be a
life-long cure.
However, there is one major problem
that arises from this otherwise very
beneficial process. At present we have
no control over where within the DNA of
the bone marrow stem cells the HIV-LCRβ-globin gene vector will insert itself. As a
result it is quite possible that a host stem
cell gene or genes will be disrupted in their
function (turned up, down, on or off) by
the HIV-LCR-β-globin gene vector inserting
somewhere nearby. The fear is that this
in turn could lead to a loss in normal cell
growth processes giving rise to a cancer
type condition. We now know that this is
not just a hypothetical possibility.
Since about 1999, gene therapy clinical
trials have been conducted in Paris and
London to treat boys with a condition
known as severe combined immune
deficiency-X or SCID-X. The same ex vivo
gene therapy procedure we described
above for the haemoglobinopathies was
used to treat these boys with SCID-X; that
is, bone marrow stem cells were isolated
from the person being treated; these bone
marrow stem cells were then genetically
corrected by introducing into them a
normal functioning copy of the therapeutic
gene, in this case known as gamma-C
(γC), using a virus vector similar to HIV
known as an MuLV retrovirus, which as
in the case of HIV permanently inserts its
genetic material or cargo into the stem cell
DNA; the corrected stem cells were then
returned to the person being treated from
where they originally came from. Normally
www.ukts.org
boys with SCID-X, which totally lack an
immune system, live only to about the
age of 2 years, succumbing eventually to
an infection that you or I would have no
trouble fighting off. However, with gene
therapy the immune system of these boys
is gradually restored and they can begin to
live a normal life, with the first two boys
treated in this way now 6 years old and
doing fine!
Although overall these trails have been a
resounding success with the gene therapy
being effective in all cases, they have
unfortunately also highlighted potential
dangers. Out of a total of 15 boys treated,
3 have now come down with a leukaemiatype condition. The main cause of this seems
to be that the MuLV retrovirus carrying
the therapeutic γC gene has inadvertently
switched-on a cell growth regulating gene
(called LMO-2) by inserting itself nearby.
As a result a single class of immune system
white blood cell started to grow in an
uncontrolled manner very similar to a
leukaemia. We are still not sure how general
this problem is going to be. At the very least
this phenomenon seems to be a hit or miss
affair depending on where the therapeutic
virus inserts itself in the DNA of the bone
marrow stem cells. The field of gene therapy
has nevertheless reacted very strongly and
much research effort is currently being
expended to address and find solutions to
the safety concerns caused by the insertion
of therapeutic virus vectors into target cell
DNA.
Future prospects
Others may differ in their view but
although the work conducted over the
last 5 years has been very encouraging, I
personally believe that certain important
issues need to be resolved before we
embark on gene therapy clinical trials for βthalassaemia and sickle cell disease. Firstly,
there is a major pragmatic consideration;
we need to develop technology to
efficiently produce large amounts the HIVLCR-β-globin vector. Secondly, we need to
still improve the efficiency with which the
LCR-β-globin therapy gene unit switcheson once delivered to the bone marrow
stem cells; at the moment there is still too
much variation between one stem cell
and the next. Thirdly, we need to try and
“insulate” the HIV-LCR-β-globin vector
once it has inserted itself into the stem
cell DNA. This will do two things. It will
minimise the possibility of the HIV-LCR-βglobin vector inadvertently switching on
or off a host cell gene that could lead to
problems such as the leukaemia found in
a few of the cases in the SCID-X trials, and
it will help to allow the HIV-LCR-β-globin
vector to function more efficiently. We
and others are in the process of testing
HIV-LCR-β-globin vectors with additional
genetic elements that possess this
“insulation” effect.
Finally, overall, I feel we need to be
near 100% sure that the gene therapy
for β-thalassaemia and sickle cell disease
will work with minimal risks. Why do I
say this? In the case of say the boys with
SCID-X, the only hope for life is a bone
marrow transplant if you are lucky to have
a matched donor. So for most SCID-X
boys, gene therapy holds the only hope
of maintaining life and as a result it is
generally thought that potentially higher
risks are acceptable in such cases since the
alternative is a very short and poor quality
life. However, this is certainly not the
situation with β-thalassaemia and sickle cell
disease, where there are reasonable albeit
rather painful and inconvenient treatments
available that can keep you going in
pretty good shape for decades! Because
of the availability of these non-genetic
but effective maintenance treatments for
β-thalassaemia and sickle cell disease, I
feel a much lower level of risk of failure
and/or side effects such as leukaemia are
acceptable compared to something like
SCID-X.
Despite all this we have without a
doubt reached a very exciting time in
the development of gene therapy for βthalassaemia and sickle cell disease. After
many frustrating years, I would say that the
advances in the HIV-LCR-β-globin vector
system has at long last given us a clear
direction to go in with a very good chance
of success. The next few years of research
will I think be crucial as we can in all
likelihood expect to see a continuing fast
rate of progress towards our first clinical
trials.
Thalassaemia Matters
...continuing the fight against Thalassaemia
news from around the world
7th Thalassaemia Camp, Malaysia:
30 April – 2 May 2005
by Chris Sotirelis
UKTS’s George Constantinou (standing, 2nd
left) pictured here with some of our Malaysian
friends.
Two members of the UKTS Committee,
George Constantinou and Chris Sotirelis,
were asked by TIF to attend this camp
as TIF representatives as well as a way to
keep up with the developments on the
care and treatment of thalassaemia in
Malaysia. This year’s Thalassaemia Camp
took place on the island of Langkawi off
the northern coast of Malaysia. It is a 3day event, organized regularly in a suitable
resort of Malaysia where patients from
all of the states of Malaysia are invited to
attend together with nurses, carers and
some doctors. This idea originated from the
members of the Pulau Penang Thalassaemia
Society (Penang T.S.) and has been running
every year since the mid nineties. The
idea behind this is to give the patients
time together to have a good time, enjoy
the company of others with a common
problem and at the same time to learn
about thalassaemia and to discuss ways
of solving everyday problems they face,
living with thalassaemia. Adolescents and
young adults who can travel independently
and unaccompanied are particularly
targeted. Parents are not encouraged to
attend unless they are accompanying a
young child. The cost of travel, registration,
accommodation and catering is entirely
borne by the Penang T.S, but only for
the Penang members. Members of other
associations have to pay themselves or their
associations on their behalf.
A number of presentations were given to
the patients, parents, doctors and nurses in
the audience over the 3-day period. These
included :
www.ukts.org
On day 1, Dr. See Ching Mey of the
School of Educational Studies, University
of Sains Malaysia, Pulau Penang, gave
a presentation entitled ‘Positive Living’
on the psychological aspects of life with
thalassaemia. She concentrated on
explaining areas such as psychological
burden, the subconscious effects on
present behaviour, commitment making,
control, challenges and tools for positive
thinking. This was followed by an hourlong break out session / group therapy
workshop where patients tried to find their
current levels of positive or negative state
of thinking. There was also a discussion
amongst each group as to what are the
main obstacles patients face daily making
increasing their mental misery.
On day 2 Dr. Lim Shueh Lin’s (Consultant
Endocrinologist, Hospital Pulau Penang)
presentation entitled ‘Fertility and
Reproduction’ gave an overview of the
main areas of growth, development, fertility
and bone disease treatments for patients
in adolescence as well as for adults. She
continued further in ‘The Endocrine Issues
– Growth and Development’, an overview
of how the endocrine system works and
is affected by thalassaemia and the lack
of iron chelation. The afternoon session
contained presentations by George
Constantinou of the UKTS, with title
‘Past Present, Future - My Life’ where he
examined ways of living with thalassaemia
and the issues it generates, using a different
point of view. This was followed by The
Psychological Impact of Thalassaemia – A
patient’s perspective’ given by Chris Sotirelis
of the UKTS. This presentation aimed to
provide an understanding of the main
drivers behind life with thalassaemia, how
they interact and affect the patients and
their families’ lives, their growing up and
personal development.
The final day involved presentations by
Dr. Goh Ai Sim (Consultant Haematologist,
Hospital Pulau Penang) on how to ensure
patients understand the issues and feel
motivated to follow the proper treatment
protocols, and followed by a look at
career and employment programs, dealing
with the challenges of seeking, finding
and getting a job in Malaysia by a state
Employment & Careers advisor.
It closed with an interactive session
with the audience where George and
Chris developed some of the issues that
were concerning patients during the visit
and individual discussions on areas such
as social acceptance, relationships, and
marriage, having children etc.
The Camp was a great success, as
confirmed by the feedback received by the
organizers. These camps are a wonderful
idea as they offer an opportunity for
patients to take a break away from their
everyday routine and meet other persons
fighting against the same kind of problems
they are fighting for. It also gives them the
chance to exchange experiences and ways
of dealing with their condition based on a
better understanding. During our stay we
were treated with the wonderful traditional
Malaysian hospitality and had a chance
to meet and make friends with a lot of
people. During the evening of the second
day there was a gala dinner organized
where a group of patients created an
impromptu play, which they performed
acting with songs for all present. It was
truly amazing to see their great creativity.
The Penang Thalassaemia Society must
be congratulated for the excellent work
they have done in providing these camps
for the patients. Over the last 10 years
since the previous visit they have been
instrumental in maintaining the difficult
tasks of giving hope and motivation to their
patients to keep them wanting to improve
their treatment and quality of life. Their
dedication and energy in the achievement
of these goals have been amazing and truly
creative, under very difficult conditions.
We are truly grateful to all we met, and
those who became our friends. We hope
that we will be able to meet again either in
Malaysia or in a future conference.
patient news
Mrs Zanib Rasul
Many of our members in the North
of England will be familiar with Mrs
Zanib Rasul, the founder of NEBATA
(North of England Bone Marrow &
Thalassaemia Association). We are
grateful to Mrs Rasul for sharing her
memories and experiences as a mother
of two children with thalassaemia; and
of how NEBATA was established.
Mrs Rasul, could you please tell us
something about your background
– where/when you were born, when
and why you first came to the UK,
anything else about your family you
would like to share with our readers.
I was born in the Pakistani district of
Jehlum on 24th November 1954. I was
the fifth child in my family and went to
school up to the end of primary school,
after which I went into Islamic studies
at Havelian Mahboobabad in the district
of Abotabad. Between 1971 and 1976
I began teaching Arabic and Urdu as
well as Religious Studies to girls aged
8 to 14. I came to the UK when I got
married to my husband of 28 years, in
June 1977. The following year we had our
Thalassaemia Matters
first of four children, and I again took up
teaching, while enrolling in college to study
English and maths as well as gaining a
qualification for teaching. Since then I have
achieved several qualifications including,
The City Guild Diploma in Community
Care, Counselling level 1, Child Care and
Introductory Course in Management. My
husband grew up in the UK and graduated
from the University of Salford with a BSc.
[hons] in 1980. We now run our own post
office business together.
My oldest daughter, Zurqa, now 27,
qualified as a medical doctor in 2004 and
is working as a house officer. Yameen,
23, my only son and a thalassaemic, will
be graduating from UMIST this summer,
with a first class master’s degree in
Computer Systems Engineering. I am very
much looking forward to celebrating his
graduation. My third child, Sajida, 20, was
born with Thalassaemia but was cured
with a bone marrow transplant from her
eldest sister. She has just finished her
second year as a medical student at the
University of Manchester. My youngest
daughter, Majida, 17, is currently doing
her A-levels at Manchester High School for
Girls. I am very proud of my children and
when I count my blessings from Allah I
count them twice.
Would you like to share any of those
memories of being the parent of a
newly diagnosed thalassaemic baby
with our readers and other parents?
And how did you manage as the
mother of a family with 2 young thal
children?
When Yameen was born he appeared
to be a normal, healthy baby, but after a
while he became pale in colour, couldn’t
sleep, cried all the time and was referred
by our GP to the hospital. After his first
transfusion he was visibly much better and
we were given another appointment for
second blood transfusion and although
I had no idea what was going on I was
happy that Yameen was feeling better.
After about four transfusions it was
suggested that Yameen might have Beta
Thalassaemia Major. This was the first
time had ever heard of the disorder. I
was told nothing excepting that the only
cure was a bone marrow transplant and
that this was more successful if the donor
were a sibling. We had ourselves and our
oldest daughter tested, with no perfect
matches. We hoped that perhaps our next
child, Sajida, would be a compatible bone
marrow donor. Unfortunately, she too was
diagnosed with Beta Thalassaemia Major.
We were distraught to hear that Sajida
would also need transfusions like Yameen
and at the time I couldn’t accept that she
too was ill. At this difficult time we were
offered no counselling or any other help
to make the situation easier for us. There
was no written information available as it
is nowadays. It was when Sajida started
having transfusions that I began to find
out what the future held for my children.
One particular day stands out in my
memory. When I was in hospital I tried
to ask the nurse when my daughter was
likely to get a bone marrow transplant. I
was bounced between doctors and nurses,
and on this day I became so fed up and
so frustrated that I cried to the point that
I almost fainted. Then Sajida was referred
to Royal Manchester Children’s Hospital for
her bone marrow transplant, as her tissue
type luckily matched with her eldest sister,
Zurqa. Everyday I saw my children being
pricked five or six times, to be canulated,
for blood transfusions. After Sajida had
her bone marrow transplant, it was a little
easier to deal with, firstly because Yameen
was able to face his treatment with a great
deal of bravery, as he still does to this day,
and secondly because there was renewed
hope for Yameen.
Continues on page 10 ➡
...continuing the fight against Thalassaemia
patient news
Continues from page 9
What gave you the strength to keep
going?
Love for my children, my faith and last
but certainly not least the support of my
husband always kept me going.
Can you tell us briefly about your
daughter’s BMT?
Sajida spent three months in hospital
isolation and three months in home
isolation (sterile diet, her own room etc),
following strict instruction from the nurses,
who were more helpful and much kinder
than what we had experienced before and
I respected them for that. Dr. Evans, the
consultant haematologist and his team
performed the transplant and we are
forever grateful. It was with their help and
professionalism that we realized that the
relationship between patient, their families
and the medical teams was very important,
and should be built on, as it is a long term
connection.
What inspired you to start your
work in support of thalassaemia and
to ultimately start NEBATA? Could
you please tell us something about
the time when you were setting up
NEBATA.
In 1988, the year of Sajida’s bone
marrow transplant, the doctors introduced
us to some other families who were
facing the same struggle of finding a
Congratulations to
Mumta &
Shane
When was the last time you saw such
happy smiles? This exotic picture shows
UKTS member (and thalassaemia patient)
Mumta Dutt on her wedding day. Mumta
and her husband Shane Walters were
married on 3rd September 2004 on the
beautiful island of Antigua. Mumta, who
works as a secretary at British Airways,
certainly knows how to choose a romantic
destination! Congratulations and best
wishes from all at UKTS.
10
www.ukts.org
donor for a transplant, as we had done
for both Sajida and Yameen. Doctors and
social workers, who had dealt with us,
suggested that we set up a local group
to give moral (and if necessary financial)
support, as well as supporting research
in to bone marrow transplantation. We
followed this advice and so the Blackburn
and District Bone Marrow Trust Fund was
born. We registered as a support group
for Thalassaemic patients and their families
in 1989, with fewer than ten members,
including myself and my husband, Mr.
and Mrs. Patel and our chairman, the late
Jamal Bhatti. We started holding meetings
in our living rooms and sometimes in the
community centre. As the Blackburn and
District Trust Fund, we slowly raised £6000
for bone marrow research at the Royal
Manchester Children’s Hospital
The establishment of our Association
was possible with the kind help of health
care professionals at the time, to bring
families and carers together. Over the
past seventeen years, we have worked
hard to support thalassaemic patients
and their families, through counselling,
distribution of written information as well
as attendance at UKTS conferences. I still
enjoy working closely with everybody who
is families and carers together. I still enjoy
working closely with everybody who is
involved with Thalassaemia.
international travels in pursuit of your
charity work.
I have attended many international TIF
conferences in different countries, where
I have gained a wealth of knowledge and
met with many families from developing
and developed countries. I have seen how
they cope with out the facilities we are
lucky to enjoy in England
Tell us something about your
What is your favourite hope for the
future and what is your greatest joy
in life?
The hope I cherish for the future is that
everything the association has come to
stand for is fulfilled and nobody feels as
lost and alone as we did in the early days,
and to have a nice big house. My greatest
joy in life is looking after my children and
seeing them happy and flourishing in their
life.
What do you miss most about your
native land? How often are you able
to visit the land of your birth and do
you have family there? Are they able
to visit you in the UK?
I miss my family: brothers and sisters
and nieces and nephews, for I have only
my own children and my husband here
in England I miss the natural lifestyle,
the food and my childhood friends. I
particularly miss my class that I taught. I
am able to visit my family in Pakistan every
two to three years, because I am very
involved with the lives of my own children
and want to spend as much time with
them as possible. Unfortunately nobody in
my family has been to England except my
late father, who came to visit in 1987, but
he didn’t like the cold weather.
Is there any particular person you
admire?
The person I most admire is my son.
If any of our readers would like to
know more about NEBATA, their
contact details are:
North of England Bone Marrow &
Thalassaemia Association
352 Oxford Road, Manchester M13 9NL
Tel: 0161 273 7200 / 0161 745 7671
Website: www.cmmc.nhs.uk/nebata
patient news
A Patient’s Struggle with
Adherence to Chelation Therapy
My name is Rachael Walker, I am
24 years old and have sideroblastic
anaemia. I have intravenous desferal
24 hours a day, 6 days a week via
my Portacath; and Ferriprox tablets
3 tim1es a day. If I do not effectively
manage this treatment I will suffer
the consequences of iron overload, in
exactly the same way as thalassaemia
patients.
I am writing this personal experience
because I was non-compliant with my
treatment for about 3 years. It is hard
for me to publicly admit this, but as I
go on to explain how I got through this
difficult time I hope you will agree that
I have managed to overcome it. This is
my final step on the road to recovery and
permanent compliance. I also hope that
if you or someone you know can relate
to any of the experiences, thoughts and
feelings I had, it will help by giving you the
confidence to realise that there is a way
out.
Until 3 years ago I was a model patient.
I was 99% compliant with my treatment.
A number of lifestyle changes then began
to interfere with my treatment regime. I
moved out of my parents’ home, where
I had the stability, support and routine of
my treatment down to a fine art. I left
university and started working full-time
as a nurse, I moved in with my boyfriend
Mark and later we got engaged. While
all this was happening within a short
period of time, my compliance began
to slowly decrease. It happened so
slowly I didn’t actually want to believe
it was true. I remember thinking about
my illness constantly. I would dwell on
my misfortunes and trick myself into
thinking that I would do my treatment
tomorrow. One minute I would feel angry
and depressed and the next I would be
consumed with guilt. It was as if, because
Thalassaemia Matters
...continuing the fight against Thalassaemia
Continues on page 12 ➡
11
patient news
all the other things in my life were falling
into place and I genuinely felt happy,
there wasn’t enough of me left to do the
treatment.
Eventually I stopped doing my treatment
altogether and my promises of tomorrow
and next week faded until I didn’t feel
as if I cared. I lied about my treatment, I
didn’t want to know my ferritin levels and
it wasn’t very often it was checked without
my prompting and I got caught out. I
didn’t feel supported and cared for by my
family, friends and hospital staff. I felt like
a burden to everyone and because of this
I felt intense guilt and embarrassment. I
was ashamed of my actions and it became
such a problem that I didn’t know or even
care how to get out of the situation. I felt
like a failure because I could not will myself
into taking my medications. I believed that
people thought I wanted to die and that
it was ll my own fault – nobody could do
it for me. I started to doubt my lust for
survival, to think that deep down, I really
did want to die.
Last summer, my consultant decided that
it was time to intervene and I was secretly
glad. I started attending the hospital
overnight for 3 nights and later 5 nights a
week to have the desferal done for me. I
did this for 5 months. My treatment was
taken out of my hands and I was referred
to psychological health for an assessment
to see if there were any treatments that
could help. I started seeing Maggie, a
cognitive behavioural therapist, once
or twice a week. Cognitive behavioural
therapy (CBT) has helped me to examine
my thoughts, feelings and behaviours and
make the necessary changes. There have
been various techniques that have helped
my recovery.
• Thought records – this is a process
of examining a situation by looking
closely at the emotions felt during
that situation. Writing down thoughts
and identifying the key thought (the
thought which causes the most intense
emotions - called a “hot thought”). The
next stage is to examine the arguments
for and against that thought to see if
what is experienced is a true reflection
or has been distorted. The final stage
involves finding a balanced alternative
thought, weighing up the arguments
12
www.ukts.org
for and against in order to understand
what it was that determined how the
situation occurred and progressed. It
also enables the changing of thinking
and behaviours.
• Behavioural changes – if I did not
believe the alternative balanced
thought, I then had to think of ways
to prove or disprove the new thought.
Usually this involved using experiments.
One such occasion was when I believed
that complying with my treatment
should be easy. I believed that others
thought this and would find it easy to
carry out. Maggie and I carried out a
survey to see if what I believed was
true. By the end of the experiment, my
thoughts had changed and I realised
that complying with my treatment is
hard and would be hard for others.
• We identified high-risk situations so that
I could find ways to cope.
• I started a treatment chart to record
my progress daily. This was kept on
my fridge and it was to help me see
my successes rather than focussing
on the times I didn’t comply with my
treatment.
• We designed flash cards to remind
me of why I needed to comply
with my treatment. These included
consequences of non-compliance and
my desire to comply and survive. It really
helped to be able to read my incentive
cards during times of loss of direction
and motivation.
• My biggest problem was thinking that
I had to cope with the treatment by
myself, that it was my problem to deal
with. I found it impossible to ask for
help, I couldn’t discuss my feelings
and difficulties with anyone because
I was embarrassed and ashamed. For
me, admitting difficulty was to fail. By
practising asking for help I began to
realise how I had projected my feelings
into what I believed others felt about
me and that these thoughts were false.
• Acknowledging that the treatment is
hard and that others would also find it
difficult to cope with.
• Allowing myself to feel angry and upset,
but to consider the positive aspects as
well.
• Realising that I can’t always be perfect,
I have experienced a blip and it may
happen again. Making sure that I do
not set my standards so high I am
guaranteed to fail.
• Having Maggie to tell me that it is
OK to find it hard and for me to start
believing her has been a real turning
point.
The most helpful aspect of CBT has
been talking through my problems and
anxieties with Maggie. Realising that I
had the answers to my questions, I just
needed help finding them. Going home
and testing methods and finding that
they work has given me the confidence
that I can do my treatment again. I found
the thought records very difficult at first. I
sometimes felt uncomfortable examining
my thoughts and feelings so closely,
admitting things I had kept hidden for a
very long time to someone I hardly knew.
Thought records are very labour-intensive
and it was hard not to want a “quick fix”
solution. My thoughts and behaviours
changed so slowly that sometimes it felt
that I hadn’t actually made any progress.
Looking back, I can start to see how small
changes in thinking and behaviour have
vast results.
Finally, I would just like to praise Maggie,
my consultant and my haematology
specialist nurse. They never once got angry
with me. They listened to me cry and tried
to do everything to help. They didn’t give
up on me, even when I believed I was not
worth helping. They always listened and
encouraged, but never judged.
Thank you Rachael, for sharing your
experiences with such openness and
honesty. We wish you all the very best.
office news
Life Assurance
and Thalassaemia
Life assurance involves paying a premium
(usually monthly or annually) to ensure
that a cash sum is paid in the event of
the death of the insured individual. Most
policies of this kind are taken out to
provide for dependants, for example, a
husband who is the family’s main wage
earner may wish to provide for his wife
and children. Life assurance policies may
also be taken out for a specific purpose,
such as to pay off a mortgage in the event
of a death. There are many different kinds
of policies on the market. Here are a few
examples –
Term assurance – this is a life insurance
policy which covers the life of the insured
person for a cash sum (the sum assured),
in return for a payment (usually monthly
but possibly annually) known as a
premium. This is the cheapest form of life
cover. Assurance is provided for the term
of the policy only, i.e. the sum assured is
payable only if the insured dies within the
term of the policy. There is no investment
value in the policy.
Policies can cover a single life or be
taken on a joint life basis, typically on a
“joint life first death” basis. In this case,
for example, a husband and wife may
take out such a policy to provide for the
surviving partner. Some term policies can
be renewed or extended.
Whole of life assurance – in this case
premiums are paid throughout the life of
the insured person and the sum assured
is paid out on death. Again, these policies
can be taken out on a joint life basis.
Endowment policies – these are savings
policies which also provide life assurance.
They are for an agreed term, with the
minimum usually being 10 years. A cash
sum is paid at the end of the term (“on
maturity”) or in the event of the death
of the policyholder. These policies are
usually taken out to repay an interest-only
mortgage. However, always remember that
an endowment policy does NOT guarantee
to repay a mortgage.
Why do thalassaemics find problems
getting life assurance?
Under the Disability Discrimination Act
1975 it is unlawful to discriminate against
people with a disability in connection
with the provision of goods and services.
However, insurance companies are allowed
to offer different terms to different people
according to circumstances. Each time a
life assurance contract is negotiated, the
insurance company must calculate the risk
they are entering into, that is, what is the
likelihood of them having to pay out the
full sum insured. For example, in a case
where no disability is involved, a healthy
person of 25 wanting a 10 year term
policy for £50,000 would pay a lot less
than a 60 year old person taking the same
policy, as statistically they are far more
likely to survive for 10 years. By the same
principle insurance companies are allowed
to differentiate between those who have
a disability and those who do not; they
can also differentiate between people who
have a certain disability according to its
severity.
Insurance companies look at each case
on its own merit. The company must
base their calculations on information
relevant to the assessment of the risk,
which is from a reliable source. This can
be; actuarial or statistical data, medical
research information and medical reports
on an individual. If you have a condition
(such as thalassaemia) which the insurance
company consider to be a high risk, the
company can exclude that condition
from the policy. It may be possible for a
thalassaemic to obtain life assurance but it
is likely to be “loaded” i.e. have a higher
premium, as in the view of the insurance
company they are taking a bigger risk.
It is also more likely to have a restricted
term. Basically, if you can find an insurer
to give you life cover, the policy is likely
to exclude death relating to any existing
health problems AND is likely to be very
expensive.
It is no longer mandatory to take out
life insurance when obtaining a mortgage
(although some lenders, especially banks,
still demand it; it is also required if you
take out an endowment mortgage). When
applying for a mortgage, be sure to ask
whether life assurance is required so that
you have the option of choosing a lender
or type of mortgage which does not
require it.
Thalassaemia Matters
...continuing the fight against Thalassaemia
– some questions answered
It is important to realise that a contract
of insurance is taken out according to
the doctrine of utmost good faith, which
means that you are obliged to disclose
any facts which might affect the insurer’s
judgement in accepting/declining the
contract, fixing the terms or adjusting the
premium, even if you are not specifically
asked for them. Therefore always ensure
that you provide all the facts on any
application and NEVER state a deliberate
untruth. If you do the contract is null and
void, the policy will not pay out in the
event of a claim and you will not get a
refund of the premiums you have paid.
You may wish to seek the advice of a
reputable Independent Financial Adviser
(IFA). IFAs must be registered with the
Financial Services Authority.
UKTS Personal Organiser
• Are you a
thalassaemia
patient/
parent of a
thalassaemic
child?
• Do you have the UKTS specially
designed personal organiser for
thalassaemia patients?
If not why not – all it takes is a call to our
office.
This valuable aid to keeping your own
patient – held medical record is FREE to
patients and parents/carers of children
with thalassaemia.
Call 0208 882 0011 to order your copy now!
UKTS Marathon Man
UKTS Marathon Man Marios Ioannides,
pictured here with his sister-in-law,
thalassaemia patient Chriso (nee
Papayiacovou). Heartfelt thanks to Marios and
all our Marathon runners for their magnificent
support.
13
office news
Travel Insurance For
Thalassaemia Patients
When travelling abroad it is important
to feel secure and have the peace of
mind that will allow you to fully relax and
unwind. Freedom Travel Insurance has
worked in conjunction with the United
Kingdom Thalassaemia Society and leading
clinicians in the field to offer people living
with thalassaemia the benefit of an A1
insurance product.
Freedom already works with other
medical charity groups and our expertise
spans many conditions from diabetes
to cancers. Our aim is to provide a wide
range of benefits with an excellent level of
security: this is achieved by the policy being
100 per cent underwritten by AXA, one
14
www.ukts.org
of the largest insurance companies in the
world.
Premiums are individually calculated
and dependent on such factors as when
and for how long you are travelling, your
intended destination, your age and how
well your condition or conditions are
managed. Medical screening and policy
document issue are carried out over
the telephone with trained staff in our
head office. Freedom is not a call centre
operation. There is a policy excess of only
£50.00 including for claims relating to
conditions which we have screened and
agreed to cover. NB Quotations will vary
subject to medical screening
Price is one thing but the true value of
an insurance contract is often realised if a
claim is made. Our programme is backed
up by a team of clinical staff, claims experts
and linguists available round the clock and
planes fitted with specialist equipment in
case of the need for medical evacuation or
repatriation.
We do not claim to be able to
help everybody with their insurance
requirements however we are hopeful
of providing a solution in the majority of
cases.
For a quotation call
0870 774 3760
office news
www.ukts.org
– On-line Donations and other
exciting new features on our website
Have you visited the UKTS website lately?
If not, why not give it a go – we have a
number of new features for you to browse
through. You can now read Thalassaemia
Matters (both current and past issues) online, post messages in our guest book and
get personalised careers advice!
NOW IT IS EVEN EASIER TO SUPPORT
UKTS! Our website has a brand new
“Give Now” feature, which enables you
to make easy, hassle-free donations
on-line using your credit card (donations
remain anonymous if you so wish). No
more stressing about stamps, envelopes, or
walking to the letter box - you can make a
donation as easily as clicking a switch.
In addition to the new features there is
lots more, including dietary advice (under
Living With Thalassaemia) and Society
information. Visit us at www.ukts.org and
see for yourself why the UKTS website has
so many visitors from all over the world.
We love to hear from our friends – sign
our guest book and you will get a message
back from us. Hoping to hear from you
soon!
Many thanks to our website committee
Mike Michael, Chris Sotirelis and Philip
Agathangelou for their continuous work in
maintaining and updating the website.
events
The UK Thalassaemia Society Annual
Dinner & Dance
Date:
Venue:
Saturday 5th November 2005
The Brewery, Chiswell Street, London EC1Y 4SD
DONATIONS
Our most grateful thanks to all our
donors for their generosity.
Mr M Ashfaq
£5
Bank of Cyprus
£100
Mrs H Castillo-Binger
£10
Mr A Gandhi
£30
Mr S Gandhi
£150
Mr J Hill
£750
Mr M Ioannides
£1,027.70
Mr Y Ioannides
£2,353.20
Mr Isaac
£50
Katon family
£35
Mrs A Katsouris
£50
Mr M Michael
£70
Mr D Phillips
£855
Miss M Purvis
£20
Dr A Tsikoudas
£200
UKTS Welcomes
NEW‑MEMBERS
Annual
Dr R W Evans
Mr D Nikolov
Mr I Vasiliev
Life
Dr H N Ahmad
Mr M Moller
Tickets available shortly from the UKTS office
Thalassaemia International Federation
• 10th International Conference on Thalassaemia &
Haemoglobinopathies &
• 12th International Conference for Thalassaemia Patients & Parents
7-10 January 2006, Dubai, United Arab Emirates
For further details please contact UKTS or refer directly to TIF on 00357 22 319 129
Conference website www.tif.ae
Thalassaemia Matters
The Editorial Committee reserves the
right to alter any articles for publication
where necessary and accept and
reproduce or copy on good faith.
Neither the Editorial Committee or the
Society accept any responsibility for any
inaccuracies or omissions.
The views expressed are not necessarily
that of the Society.
...continuing the fight against Thalassaemia
15
membership application form
UK Thalassaemia Society, 19 The Broadway, London N14 6PH
Charity Reg No. 275107
ALL DETAILS AND INFORMATION WILL BE KEPT ON OUR COMPUTERS AND WILL REMAIN IN THE OFFICE AND WILL NOT BE MADE
AVAILABLE TO ANYBODY OUTSIDE OF THE UKTS.
If you however do not wish your details kept on our computers please tick this box
Your Personal Details
Contact Details
Title (Mr/Mrs/Miss/Ms/Other):
Telephone:
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(please tick)
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If you are a patient or parent of a patient please complete the section below
Patient’s
Name(s):
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Name:
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Telephone:
Address:
Blood Transfused
Whole
Chelation
Desferal
Transfusion
Frequency:
OFFICE USE: Date Paid
Units received at
each transfusion
Receipt No.
www.ukts.org
(please tick)
Washed
Frozen
Filtered
(please tick)
Deferiprone
Blood
Type
Approval Date
Desferal & Deferiprone
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