Stuart Andrew Lawtie Memorial Fund
Supporting care of young people with uncommon cancers
for their age
The Stuart Andrew Lawtie Memorial Fund (SALMF) is a registered charity in Scotland (SC043271)
that aims to work in partnership with others to promote research and good practice in the care and
treatment of uncommon cancers in young people.
Stuart was 25 when he was diagnosed with colorectal cancer. Following 2 ½ years of intensive
treatment and care, he passed away on 11th February 2011. He was and remains a truly inspirational
character.
The main objective of the fund is to ensure the on-going support for an annual Scottish conference
that addresses the impact of uncommon cancers in young people and, to support other initiatives that
meet the charity’s objectives.
To date, we have arranged a number of events and activities that have established a fund to support
the annual conference and other related activities.
We are always looking for ideas to help raise money for the charity. Every penny raised goes
towards our charitable objectives with all charity administration done on a voluntary basis.
Find out more at:
www.stuartlawtiefund.co.uk
Charity Registered in Scotland: SC043271
1|Page
The challenges of managing young people with cancer
Stuart Andrew Lawtie Memorial Year 3
Beardmore Hotel and Conference Centre, Glasgow
21st May 2014
Introduction
It is now recognised that teenagers and young adults with cancer are a vulnerable group of patients
with unique medical and psychosocial needs who are less likely to access optimal cancer services,
than any other group of patients. Concerns for this group include delay in diagnosis, low accrual on to
clinical trials, poor compliance and lower reduction in cancer mortality rates compared with children
or older adults. The Scottish Government has committed to improve cancer care and clinical
outcomes for teenagers and young adults up to the age of 25 years with cancer in Scotland. The
Managed Service Network for Children and Young People with Cancer has been charged with
delivering this vision.
The most comprehensive way to support the needs of young people has been through the
development of adolescent cancer units. Teenage Cancer Trust, a UK charity, has developed,
funded, built, and now maintains 27 specialist units within NHS hospitals across the UK. There are
two age-appropriate Teenage Cancer Trust Units in Scotland, in Glasgow and Edinburgh, for young
people aged 16-24 years in Scotland, and the MSN and Teenage Cancer Trust are exploring ways of
ensuring that all young people throughout Scotland have an opportunity to benefit from these
services.
The conference
It is recognised that providing cancer services for young people is a particularly complex and
challenging area and will require new clinical collaborations that cross cancer site-specialised
practice models, and adult and paediatric services. In recognition of this the theme for the year 3
Stuart Andrew Lawtie Memorial Conference was ‘The challenges of managing young people with
cancer”.
2|Page
Set in the luxurious venue of the Beardmore Conference centre in Glasgow, the Stuart Andrew
Lawtie Year 3 Memorial Conference attracted 103 delegates from around the UK. The meeting was
truly multidisciplinary, including doctors, nurses, allied health professionals, researchers, managers
and charity representatives.
Developing a model of care for teenagers and young adults with cancer in Scotland that will ensure
all young people receive a holistic approach to care presents a significant challenge. Consideration
must be given to the entire patient journey, from first symptom to diagnosis, treatment and, hopefully,
survival and living with and beyond cancer. The meeting took the format of a series of guest speakers
and six workshops, with each delegate having the opportunity to attend two, which addressed
different aspects of the patient journey.
The first session of the day began with a moving insight into this difficult journey when treatment is
unsuccessful and a patient is faced with an incurable disease, with parents’ view from Sheila and
Andrew. They are Stuart’s parents and set up the Memorial Fund which underwrites the conference
costs, following the loss of their son to colorectal cancer in 2011.
Looking at the first phase of the patient journey, establishing diagnosis, Dr Lawton’s (GP from
Aberdeen) workshop explored barriers to early diagnosis that result may result from patients, primary
or secondary care. It is reported that young people often visit their GP four times before their
symptoms are taken seriously. Current developments in this area by Teenage Cancer Trust were
acknowledged, including the education programme about the common signs and symptoms has
been rolled out to young people in secondary education to raise awareness. Five of the most
common symptoms and warning signs in young people are: unexplained and persistent pain; a lump,
bump or swelling; extreme tiredness; significant weight loss; and changes in a mole. In addition, three
visits to a GP for the same signs and symptoms warrants further referral. These are being
incorporated into referral pathways for TYA in Scotland. Discussion at the workshop highlighted
difficulties experienced by Primary Care physicians with regards to access; access to appropriate
investigations and access to secondary care, and in particular, identifying the appropriate specialist to
refer the patient with suspected cancer to. Unlike in the paediatric setting, there is no general
physician to refer the young adult patient to. Easier access to radiology by the Primary Care Team
may avoid unnecessary delays if imaging can be arranged whilst awaiting specialist clinic
appointment rather than the traditional sequential manner in current practice. The Scottish Cancer
Taskforce will publish National Suspected Cancer Referral Guidelines in June 2014 and will include
specific guidance for the TYA population.
Once patients have a diagnosis of cancer it is essential to manage the patient in an age appropriate
environment if we are to meet the unique developmental needs of this age group. Sam Smith, Head
of Nursing and Quality (North) for Teenage Cancer Trust, provided an insight into how this may be
achieved. The Blueprint of Care outlines the best practice for those working with TYA with Cancer
and Sam explored how this model could be adapted to meet the needs of our population in Scotland.
It is challenging for able bodied youngsters to be confronted with a cancer diagnosis as they navigate
the seas of adolescence but an additional level of complexity is faced by young people with
disabilities. Greater awareness of this was highlighted by Allison O’Donnell, specialist in supporting
health professional caring for people with learning disabilities and life limiting illnesses, who explored
in her workshop the challenges and barriers impacting on identification of disease and appropriate
treatment in young people with learning difficulties.
3|Page
In order to deliver a first class service model for young people with cancer we must ensure we have a
highly trained workforce with the appropriate expertise not only of cancer medicine but also the skills
required to meet the additional needs of this age group. Wendy McInally, Senior Lecturer in Nursing
at Napier University in Edinburgh, highlighted the importance of developing good education
programmes to ensure we have a trained workforce. An update on current resources and plans for
future developments was outlined.
We know that improvements in survival rates are achieved by recruitment of patients on to clinical
trials. Dr Lorna Fern, Full-time researcher for the NCRI Clinical Studies Group for Teenagers and
Young Adults with Cancer, focused on the importance of recruiting patients to clinical trials, as this, in
turn, translates to improved survival. While accrual rates have improved of the TYA population over
the last five years, with rates in Scotland comparable to those for the rest of the UK, greatest
improvements are seen for the older teenagers rather than the young adults. Changes relate to
increased trial availability and access, centralisation of care for TYA, amendments to age eligibility
criteria to reflect tumour biology and increased collaboration between adult and paediatric clinical
research groups. Clinical trials may be developed by adult physicians and paediatricians, with an
arbitrary cut of around 16 years. Many of the adult developed trials have a lower age cut off of 18
years; young teenagers may be innappropriately denied a clinical trial due to age rather than disease.
Recently, the NCRI TYA CSG has successfully campaigned to lower the age limit to 16 years to
ensure that age is not a discriminating factor for patients with cancer to be recruited on to a clinical
trial. Clinical trials should be based on biology rather than age.
Additional barriers to trial accrual are recognised amongst health professionals and patients. The
National Institute for Health Research funded study, BRIGHTLIGHT, is a national cohort study of over
2,000 TYA diagnosed with cancer which opened in October 2012. It sets to examine the nature of
specialist care, associations between outcomes and levels of specialist TYA care and health
economics and will hopefully provide greater insight into clinical trial accrual.
With support from Dr Lisa McCann’s (Senior Lecturer in Cancer Care within the School of health and
Social Care, University of Surrey) research into technology perhaps there are as yet untapped
avenues to explore which may help with the recruitment process that attracts young people. Young
people are avid users of social media and it is incumbent on health professionals to modernise
methods to engage young people.
It is a difficult time for a young person when confronted with a diagnosis of cancer; their life is put on
hold, just when it is taking off. They are faced with treatment decisions, their own mortality, loss of
peer support, the security of the education system and lack of control. In addition, they are forced to
discuss the long term consequences of treatment. Fertility issues are a major concern for survivors
and discussion about future reproductive function is an important part of patient care. While it is a
difficult issue to talk about, consideration of future fertility says to the young person that we are
looking to the future, beyond treatment, to survival and quality of life. Professor Wallace, Paediatric
Oncologist with expertise in reproductive function in cancer patients, in his workshop discussed which
patients were at risk of infertility and what could be done about it. The key messages from the
workshop were: clinicians should discuss fertility issues with every patient before undergoing cancer
therapy and sexually mature males should be offered semen cryopreservation. There are no fertilty
presevration options for prepubertal boys. For females, of any age, there are no clinical options for
preservation of feritlity, however ovarian tissue may be harvested and cryopreserved, potentially for
future use, but this is experimental and should only be undertaken in the context of a research study.
4|Page
In the eloquent presentation by Dr Sophie Barrett, Medical Oncologist, we heard about the diffculties
faced by young women diagnosed with breast cancer when they are pregnant.
Dr Chris Hewitt, Consultant Clinical Psychologist, delivered a workshop on cancer prehabilitation.
Increasing patient preparation for treatment would enhance patient experience. The learning points
from his workshop were: greater explanation of professional roles within the multidisciplinary team
and explanation of some of the medical terminology. It is important to outline to patients what they
can expect, not just about their treatment, but how the process of multidisciplinary meetings and
formulation of management plans; A ‘Rough Guide’ approach to ‘what will happen, when, how likely
am I to feel’, was suggested. It is also important to provide information for parent families and peers;
what the challenges are and what has helped for other people. In addition, there is a need for support
for siblings in school and to help them communicate with their peers. The format of this material could
be an interactive ‘FAQ’s’, but we need to be creative if it is to be appealing to young people.
Information needs to quantitative and qualitative to be meaningful to patients. It was suggested that
consideration of an incentive to complete feedback may be motivating in itself.
Sadly, despite overall survival rates of 80%, a number of teenagers and young adults have very
aggressive disease and cure is not possible and care is reorientated to palliation. Dr Gordon
Linklater, Consultant in Paaliative Medicine, eloquently demonstrated how we can all play a role in
improving quality of life for young people as they face the end of the journey; much of this care costs
nothing and is simply the human elemnt of care and kindness that health professionals deliver all the
time. It was a salutary lesson for all of us.
It was very clear, over the course of the day, that we have come a long way in recognising the needs
of young people with cancer and identifying the challenges. However, it is important to continue to
develop and build on the good collaborations that cross cancer site specialsed practice models, in
paediatric and adult services, across multidisciplinary teams in primary and secondary care. In
addition, we have to conitnue to work with social care, third sector organisations and education
departments if we are to truly meet the needs of young people with cancer. Through the enormous
efforts and dedication of Andrew and Sheila we were all able to enjoy a tremendously informative day
and were able to take back a greater awareness of the needs of young people with cancer into our
own practice. The enthusiasm by the delegates throughout the day will certainly provide the
momentum and generation of ideas for the Stuart Andrew Lawtie Memorial Year 4 Conference in
2015.
5|Page