The one thing that we pride ourselves is that when we
develop any of these materials, it's not just a nurse writing
them. It's a multidisciplinary
approach. So we have physicians, we have
nurses and perhaps uniquely, we usually have a patient voice in
in the early stage of planning of every material we do.
Welcome to EHA Unplugged, the official podcast channel of the
European Hematology Association. EHA.
I'm Sarah de Ficher and I'm here today with two very special
guests from HNHBC, Maraid and Eric Maraid.
Would you mind introducing yourself?
Hello, my name is Marini Canela. I am the Vice President of the
Hematology, Nurses and Healthcare Professionals Group,
otherwise known as HNHCP, and I'm also a bone marrow
transplant coordinator in Saint James's Hospital in Dublin,
Ireland. Eric.
Yeah, my name is Eric Adds. I'm the president of the
Hematology Nurses and Healthcare Professionals group, and I'm
nurse manager at the hematology department at the University
Hospital in Zurich in Switzerland.
Many of our audience will not be quite as familiar with HNHCP, so
could you tell us a little bit about, you know, what is HNHCP?
Where did it come from? How did it start?
Yeah, HNHCP was established about 10 years ago and our main
focus is educating nurses and Elliott Healthcare care
professionals like physiotherapists, nutrition
specialists, social workers, etcetera, etcetera, to educate
them in the field of hematology. Over the years, I suppose we
noticed that there was a a scarcity of education and
information for nurses working in general hematology and the
areas like bone marrow transplants are very well
covered by other organizations, both general nurses working
generally at the coalface with patients with myeloma, lymphoma,
CLL that never referred for specialist treatments.
There wasn't much out there in the lines of educational
material or information or even a conference where they could
meet and come together and share ideas and get it, learn what was
happening in other centres throughout Europe and the world.
OK. So man, you've been going for 10
years. What are the sorts of things,
the activities that you do for that part of the community these
days? So important is we are global
organization and our main focus is our annual meeting.
It's a 2 day hybrid meeting and then the development of
educational materials from non malignant and malignant diseases
and we develop textbooks and important is for some nurses and
other healthcare professionals. The lack of language.
We translate our textbook from English in French, Italian,
German and Spanish language. And we have AE learning platform
where people can educate themselves, can do a test and
then we have the E by accreditation.
So today's we have developed 7 learning programmes on ITP
myeloma, acute leukemias, chronic leukemias, lymphoma, CAR
T therapy and bispecific antibody therapy.
And our 8th program is in development at the moment and we
are looking at hemoglobinopathies and as well
as the material textbook. As he said, the the learnings
available in only in English, unfortunately, but is there for
individuals to access. But also we have collaborated
particularly with the likes of the CAR T program, with
institutions in the Netherlands and Austria, with translating
them locally into their language for use by universities and
national societies in those countries so that they can
access the material as well. Within the community, umm, how
have these activities benefited both the healthcare
professionals but also the patients?
We think, we would think that there's been a very positive
receptionism, but we know from the demand for the information,
the fact that it's readily accessible both in print form
and downloadable from our website.
And we know from tracking the downloads that they're being
accessed everywhere in the world.
But we know that they're not only being used for the
education of nurses, but as we said very keenly for other
healthcare professionals and even in some places are being
used as an introduction to certain topics where junior
doctors may not see a lymphoma patient or a CAR T, but they may
be seeing them when they come in sick.
That's some way of being able to get themselves up to date with
what may be involved. The one thing that we pride
ourselves is that when we develop any of these materials,
it's not just a nurse writing them.
It's a multidisciplinary approach.
So we have physicians, we have nurses and perhaps uniquely we
usually have a patient voice in in the early stage of planning
of every material we do and then they get reviewed of by other
physicians and nurses and patient voice that are not
involved in the development of the original material.
So it has it has that unique perspective that it kind of
covers all remits and facets of the patient journey, which is
really important to us. I mean, that sounds very, I mean
not just admirable, but I'm very impressed by the amount of work
that must go into that. What are the some of the
challenges that you are finding in sort of meeting the demands
of the community from, you know, from your standpoint?
I think one of the demands is that you can never produce
enough material and produce it quickly enough.
And there's also some of the programs need to be updated
frequently, but others probably not as frequently, but we really
wanted that the material is updated in a timely manner so
that it's something that is there and accessible and has
developments for nurses that are not able to get to meetings and
like the likes of E ha that we're being at this week is
wonderful and fantastic. Resources for nurses are limited
and there's not necessarily the funding for them to get to
things with the likes of our online meeting.
For people in low and middle income countries and also for
Africa and places like that, we offer them free registration to
the online meeting so that they can at least access the
education. And at board of these, we are
not only focusing on advanced nurses, but also newcomers.
So new nurses, new other healthcare professionals coming
in the field of hematology because there's a big, big need
for hematological education because in a lot of countries
hematology is only a very small piece in the general education.
Also, due to the expanding field of hematology, it's so important
that nurses get a proper education because our philosophy
is when nurses are not well trained, well educated, they
can't inform patients and relatives properly.
It's very, very, very true. You're saying the the sort of
rapidly developing field of hematology and the the European
Hematology Association has also been working on this and has,
you know, concerns about what's this going to look like in the
future. What do you think that sort of
the role of our collaboration should look like in order to
facilitate that? I think it's having an awareness
of the needs that are out there, being able to collaborate as we
do nicely even in the likes of this podcast, to say that we
exist, that there is a resource out there.
We rely the same way that we advertise and say that there is
resources available with EHA on our website.
That collaboration to be able to bring it to the attention of
physicians and scientists in other organizations that they
can go and spread that news to their nurses that there is
something that they can use and that they can access readily and
easily without a huge cost. And the other thing is, is that
even the importance of nurses in hematology needs to be
recognised. In some countries still, you
know, hematology nursing is not fully recognised as a
speciality. And and there are places where
maybe oncology nurses are having to take on some of that burden
so that they can too have access to information and education and
hopefully develop an interest in the area.
Hematology nursing is more than just looking after somebody with
leukemia. It's the hemoglobinopathies,
it's hemophilia, it's thrombosis, it's the Itps, it's
the elderly patient who may suddenly be diagnosed with CLL
or myeloma on top of other comorbidities.
And how do you manage that? And that's why in some of the
materials that we do, we look at special populations like nursing
the person who's elderly, so that the nurse that's looking,
working within care of the elderly can access the material
and say this is a hematology patient, what do they need?
What can we do? What do you think are the the
sort of the challenges that nurses are going to be facing in
the coming years within hematology, but maybe
potentially also in general? I think hematology is the rapid
evolvement of hematology. All the opportunities in most
countries patients have to make decisions for their therapies.
I think that's that's one of the the biggest challenges for the
future. And on the other hand, in
general, I think very important item at this moment is talking
about staff shortages in in a lot of centres in a lot of
countries. So we also as HNHUP, we are
trying to motivate colleagues to stay in the field, to educate
them probably. So there we see also a role and
also together with associations like EHA of course, who bring
our forces together. I think another challenge too
is, and it's a challenge for EHA as well.
And we've established ourselves in a way as the experts of the
people that can deliver treatments like CAR T,
bispecific antibody therapy and antibody conjugates safely.
But now these treatments are expanding out to other diseases.
And there's a huge challenge for both medical and nursing because
these are going to go on to other areas and we're going to
have to lead the education of people in other diseases like
rheumatology, dermatology, even solid tumors.
And that's a huge challenge and there's a huge implication both
on resources and time, because we still have to educate our own
staff. We still have to have the
expertise and the education there.
And so that's going to be very difficult.
There's also a little bit about the role of nursing and
transferability of education across countries.
I know we have been doing an awful lot of work with like
medical passports and things like that to have a
standardization. It's not going to work quite the
same way for nursing. If there could be some way of
harmonizing things, that would be great because it wouldn't
increase potentially work flow and enable maybe retention of
staff if they thought that they can then use their
qualifications and skills elsewhere if they wanted to,
that there's an easy way of doing it without having to go
through jump through an awful lot of hoops with transferring
registrations, etcetera. And other challenges in the in
the field of hematology is the collaboration between the
several multidisciplinary disciplines.
So to bring all those stakeholders together in this
expanding field of hematology, it's a huge challenge for all
the organizations. But I think there's an
opportunity for a good collaboration between EHA&HNHUP.
So I'm going to play The Time Machine game.
If we could get into a time machine and transport 50 years
in the future, what would your ideal situation be?
At the annual meeting of EHA should be nurses involved in
terms of joint sessions. Again, this multidisciplinarity
between physicians and other disciplines and nurses, I think
will be in the future more and more important.
I think a lot very much along line of what Eric says, a truly
collaborative holistic approach to patient care that involves
the multidisciplinary team, the patient, their carers and and
the wider support networks. And a recognition that OK, there
are other things out there that will also feed in and help
deliver treatment to patients that is accessible, affordable
and near to their home. Now I'm not saying that it means
that everybody has their treatment at home, but being
able to provide that care in a holistic, appropriate, patient
centred fashion. That sounds like a great
feature. It would be wonderful.
Well, the other game is the magic wand.
What would you use to fix it? I think a lot of the challenges
that we're facing at the moment are to do with staffing and
resources and retention of staff and trying to reduce the burnout
rate, the rate of people leaving to do other, to go to other
professions because they don't see nursing as being attractive
in keeping with this work life balance that we all like to
have. And I think that if you could
have a magic wand to make nursing a more attractive
proposition and to be able to develop ways of keeping people's
interests and career pathways. But I also think there's a
challenge that the role of nurses at the bedside is valued
as much as the role of an advanced nurse practitioner.
So I absolutely agree. I think we should educate every
nurse and nurse assistants SO and other disciplines and, and
also not not only inpatient nurses, but also so due to
future developments in hematology, outpatients setting
will be more and more and more important.
Yeah. Yeah, the role of community
delivered therapies is going to become paramount to what we're
doing and to what is there for patients.
So being able to to do that safely and effectively is really
important. So maybe before we finish, what
drives both of you to be so actively championing the nurse
and the allied healthcare professional within hematology?
What is it that gives you joy? So my drive is and I'm working
now almost 35 years in hematology.
Is that to motivate nurses and other healthcare professionals
and educate them probably to to optimize the care for our
patients and don't forget the relatives that that's my drive
in this field. I think similarly to Eric, he
unfortunately reminded me yesterday that I'm about 35
years in the field also. But it is the reward you get
when you know that you've been able to improve the working life
of a nurse, or they're what they're able to deliver to their
patients locally. That you're able to impact the
care that somebody is giving to patients, that you're giving
them the resources and the knowledge and ultimately helping
them develop the skills to care for patients and their families
and, and hopefully enhancing the patient's quality of life by
doing that and. Another important item is here
in the western part of Europe, we have a lot of opportunities,
but we also focus on the eastern part of of Europe, on African
countries, on countries in South America where nurses have often
less opportunities also to involve them and to educate them
properly. That's also a huge drive and
opportunity and challenge for the future.
I think both of you are doing an admirable job and I would like
to thank both of you for coming to talk to us today.
It's been a very insightful conversation and I hope to see
more of these conversations in the future.
And we'd also like to say thank you for the opportunity to
highlight and and promote nursing and the
multidisciplinary team within the setting.
It's really nice to know that it's valued and that and the
collaboration we have with EHA, with the patient groups that
that we're able to collaborate to develop and to move the field
of hematology forward. Thank you to our listeners for
tuning into this episode of EHA Unplugged.
Uh, follow the podcast channels and we look forward to you
listening to the next one.