The Macmillan
virtual MDT has been developed to help patients experiencing chronic
long-term consequences following cancer treatment, the project has several
groups which exist to agree and maintain the direction of the project. One of
the most important groups is the Macmillan virtual MDT Reference Group for
People Affected by Cancer (RGPABC). The role of this group is to provide advice
and guidance to the project, and to help support the optimisation of patient
experience during a referral to the vMDT.
Each member of the RGPABC has their own experience with
cancer, and many have a personal understanding of long-term consequences
following treatment for cancer.
Dr Tim Ward is the Chair of the RGPABC and a retired Cancer
Research UK Scientist diagnosed with locally advanced prostate cancer in 2011.
He underwent radiotherapy in 2012 and as a result, suffered with Pelvic Radiation Disease. Currently,
Tim’s professional activity centres on involvement in late effects projects as
a patient advocate. Tim says, “I think the vMDT is a brilliant modern
system for patients to gain access to many specialists in a single referral.
This approach is a new way forward when dealing with the often baffling and
complex nature of late effects from cancer treatment. It is in my view a
pioneering landmark project.”
After
radiotherapy and chemotherapy treatment as a young adult for Hodgkin’s
Lymphoma, Katherine Stevenson had no knowledge of potential late effects or
consequences of her treatment. "Everyone
focuses on the fact you are 'cured'". Over a period of years
she was experiencing a variety of medical issues and symptoms. Katherine
visited her GP, and after many consultations, tests, and referrals she reached
a point where no one knew what to do to help. She says, “I was told
I was a rather complex case.” At 36, remembering a connection
between the chest radiation and breast cancer, she asked her GP for a mammogram
and they found an early breast cancer. Katherine says, “I never knew
there was a specific term for problems that arise after cancer treatment, when
I found out they were known as ‘late effects’ and ‘consequences of treatment’ I
was able to find more support and information. I think it’s great that the
Macmillan virtual MDT exists to help people who feel their problems are too
complex or too difficult to treat. It will help both patients and healthcare
professionals to understand more about the long-term consequences of treatment
for cancer.”
Mike Thorpe is a valued patient advocate for those affected
by cancer in the Greater Manchester area and beyond, he says, “My
own experiences of the long-term consequences of cancer treatment are limited
due to only starting to be clear of hormone therapy since March 2016. I am
aware that there is a strong possibility of consequences for bowel, bladder and
sexual function because of radiotherapy and hormone therapy treatment. I feel
that the vMDT will give patients with complex long-term consequences access to
the best methods of managing their conditions from the best experts around the
country.”
In 2009, Jenice Collins was diagnosed with leukaemia. After
initial chemotherapy treatment, she had a Stem Cell transplant in 2012, “I am
very lucky to be in remission and I am forever grateful as the transplant has
been lifesaving. I once read an article where a Stem Cell transplant was said
to be just as life changing as open heart surgery. At the time, I didn’t
understand the comparison but with hindsight I have come to realise what they
meant.” Jenice reports that there’s not a part of her body that is
unaffected by the transplant, and over the years she has had referrals to most
other medical specialties. The issues are sometimes complex, and almost all
related to some side effect of the treatment, “Most of the referrals have led
to straightforward changes in my life which have no doubt improved its
quality.” Jenice believes the development of a vMDT is important
because it will “…make sure there is access to specific expertise and a knowledge base
that exists across the UK but is not always visible to the patient. We often
just accept long-term side effects but there may be very easy solutions to
these which can improve our quality of life.”
As we know, there are around 625,000 people in the UK
experiencing long-term consequences following treatment for cancer. These late
effects can be very diverse and complex because of multi-modality treatment and
require expertise outside the conventional follow-up clinic way of working. Dr
Gill Levitt is the clinical representative for the RGPABC, and an Honorary
Consultant Paediatric Oncologist with years of experience helping people with
late effects. Gill’s view is that “This multi-disciplinary platform can
provide expert advice without the need for patients to travel to different
locations. In addition, it enables healthcare professionals from different
specialties to work cohesively towards the goal of improving the outcome for
patients.” The way the Macmillan vMDT has been developed will
also contribute to dispersing expert knowledge across the UK which is needed to
provide first class care for people living with and beyond cancer.
Due to their combined knowledge and experience, the RGPABC
have been instrumental in ensuring the patient is at the heart of any referral to
the Macmillan vMDT. The group recommended that all patients agree to a referral
before it is made by their healthcare professional. They developed a patient
information leaflet, explaining how the vMDT works and providing an
opportunity for patients to write a personal statement, to be submitted with
their referral, about how their complex symptoms are affecting their quality of
life.
The aim of the vMDT project is to improve outcomes and
quality of life for people experiencing complex long-term consequences, with
the help of RGPABC members the future direction of the Macmillan vMDT will
continue to be developed, including how patient experience can be captured –
and optimised. The RGPABC want anyone experiencing debilitating consequences of
treatment to know that they can seek help, they don’t just have to ‘live’ with
the problems they are facing.
For further information on Macmillan virtual MDT visit: www.macmillan.org.uk/vmdt
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