Earlier diagnosis and advances in treatment mean that more people are living with and beyond cancer,1 with approximately half of those diagnosed today living for ten years or more.2 Alongside positive clinical outcomes is the need to identify the key psychological challenges faced by individuals experiencing longterm cancer survival, and whether current provision of psychological support and services meet the needs of this relatively new group of patients. It is important to note that the psychological challenges faced during long-term survivorship are often not independent of those experienced at other points in a patient’s journey, including diagnosis, during or at completion of treatment, remission or at no evidence of disease (NED). As such, a broader view is necessary to ensure that psychological challenges faced in long-term survivorship are not addressed in isolation and individual impact is acknowledged. Many European countries include referral pathways to psychological support in cancer care guidelines however, this is not always the case in the UK. For example, lung cancer guidelines do not include psychological assessment, referral pathways to psychological support or mention psychological burden.3 Existing guidance relating to the supportive and palliative care for adults with cancer was published by the National Institute for Health and Care Excellence (NICE) in 2004.4 Since then, the cancer treatment landscape has seen significant advances with earlier diagnosis and improved survival rates alongside changes within the wider environment including the advent of social media and other digital resources. The ‘Psychological Support for Patients Living with Cancer - Patient Workshop’ aimed to identify the uniting, unmet psychological needs of people living with and beyond cancer. The workshop found the following key themes: • Prioritising quality of life (QoL) • Challenge of re-introduction to the community following treatment • The impact of cancer on families and carers When addressing the provision of psychological support and ways in which current services could be improved, the following areas were discussed: • Integrating psychological support into the treatment pathway • Improving timing and communication • Securing timely support • Acknowledging differences • Getting support for families and carers The wider environment, existing initiatives and the resulting workshop learnings will help inform MSD’s wider understanding of this topic and help to shape future planning regarding MSD’s contribution to support the psychological well-being of patients living with and beyond cancer.

1. 1
Prepared by Red Consultancy
The patient workshop and the development of
this workshop report have been fully organised
and funded by MSD
Job number: GB-NON-01755
Date of preparation: November 2019
THE PSYCHOLOGICAL
IMPACT OF LIVING WITH
AND BEYOND CANCER
Understanding the
psychological needs and
support for patients living
with and beyond cancer –
patient workshop report

2. 2 3
Talk to someone who
had been through my cancer!
Get help for my wife
Be more positive
Listen to what others were saying
like my CNS, consultant and SLT
Be honest with myself and others
Make sure you engage with familybetter + discuss the cancer ->
use the ‘C’ word.
Try and engage with a team ofprofessionals to get the support youneed. Educate yourself and othersabout the disease.
Get a second opinion
Seek support groups don’t do iton your own
Seek treatments & trials at specialisthospitals
Go to medical conferences learn everythingyou can about your disease
Talk to people don’t do it on your own.
“This too shall pass”
Don’t get so fixated on any bad
moments, life evolves & changes –
what sucks now, will be OK soon ,
maybe not tomorrow or the next day
but one day.
Cherish the day!
B e kinder to yourself –
don’t feel bad that you don’t
always cop e – it’s hard and
you’re doing well
Learn to accept that the fear
is part of it and do the things
that make you feel better.
Sp end more time with the
p eop le who ‘get it’ and less
time with those who don’t.
Anita Brown,
Bladder cancer
Lucy Davis,
Melanoma
Chris Curtis,
Head and
neck cancer
Adrian Markwell,
Melanoma
Mavis Nye,
Mesothelioma

3. 01
FOREWORDCONTENTS
From a certain angle, finishing cancer treatment looks like the time to shrug off
the bad days, salute a fight well won and unpause life – or ring in a shiny better one.
Looking from the inside, it’s not like that at all. We can hear it every day when we stop to
listen, that living with and beyond cancer is a whole new layer of challenge, all the more
insidious for being far less visible than a blob on a scan.
The pressures of the world pile back in, and the future, previously assumed to be benign,
now has to be negotiated under a cloud. Changed bodies have to be coaxed back, tolerated,
suffered. The uncertainties of living, previously easy to ignore, are now staring sharply back.
All the more when it’s painfully clear that more suffering is to come, and this is (at best) a
pause, not an all-clear. Living with cancer, constantly on treatment or with welcome and
dreaded pauses, forces people to live in a liminal way unlike anything else they ever did.
I am delighted that MSD are showing curiosity and commitment in this complex territory.
Survival is the core metric, but quality of life is the real prize. From decades of psychosocial
oncology evidence and clinical insights, we know that human adjustment is infinitely more
complex territory than drug development, plus, we can only study it amidst the grit of life,
not sterile labs.
Sitting with and listening to Anita, Adrian, Lucy, Mavis and Chris, who share their stories
and struggles with generous openness, is a very good start. They tell us, when we stop to
listen, that there is no single prescription for this process, and every person has to navigate
re-adjustment in their own unique context.
But not alone. It is a given that we all need reliable, safe and expert systems around us to
guide and support through difficult times. Even if the treatment is scientifically excellent,
if the support is wrong, psychological impact will be the measure of our failure. It is a huge
new challenge for healthcare to offer flexible, thoughtful and just-in-time support to the
individual person in their individual context, when everything else in cancer is (rightly)
organisedarounddeliveringalinearsequenceoftreatmentsquicklyandsafelyandaffordably.
We all know we need to do both. We’ve recently made some progress in designing such
systems, but we are a long way from having this happen on the ground. We need to share
the vision and spread the effort. For everyone in cancer care who cares about wellbeing, we
welcome the company.
Dr Alex King
Consultant Clinical Psychologist
Lead for Psycho-Oncology
Imperial College Healthcare NHS Trust
Forward 01
Executive summary 02
Section 1. Overview of the current psychological support
available for people living with and beyond cancer 03
1.1. The National Institute for Health and Care Excellence (NICE) guidance 04
1.1.1. The NICE Four-Level Model of Psychological Support 05
1.2. The Macmillan Cancer Care Recovery Package 06
1.3. NHS England Quality of Life (QoL) Metric 06
1.4. The NHS Long Term Plan 07
1.5. Signposting and accessibility 07
Section 2. Patient workshop: Psychological support for patients living with cancer 08
2.1. Workshop participants 08
Section 3. Workshop discussion:
The psychological impact of living with and beyond cancer 10
3.1. Impact on quality of life 10
3.2. Challenge of re-introduction to the community 12
3.3. Impact on carers and families 13
Section 4. Workshop discussion:
How do people living with and beyond cancer seek psychological support? 14
4.1. Sharing experiences with the community 14
4.2. Addressing specific challenges 15
4.3. Distinguishing explicit/implicit psychological support 16
4.4. Sharing experiences with the community 17
Section 5. Workshop discussion:
What should psychological support look like for people living with and beyond cancer? 18
5.1. Integrating psychological support as part of the pathway 18
5.2. Improving timing and communication 19
5.3. Securing timely support 20
5.4. Acknowledging differences 21
5.5. Getting support for families and carers 21
Section 6. Conclusions 22
References 23

4. 02 03
EXECUTIVE SUMMARY
FIGURE 1 –
THE CHANGING CANCER STORY
Used with permissions from Macmillan Cancer Support
Earlier diagnosis and advances in treatment mean that
more people are living with and beyond cancer,1
with
approximately half of those diagnosed today living
for ten years or more.2
Alongside positive clinical
outcomes is the need to identify the key psychological
challenges faced by individuals experiencing long-
term cancer survival, and whether current provision
of psychological support and services meet the needs
of this relatively new group of patients. It is important
to note that the psychological challenges faced during
long-term survivorship are often not independent
of those experienced at other points in a patient’s
journey, including diagnosis, during or at completion
of treatment, remission or at no evidence of disease
(NED). As such, a broader view is necessary to ensure
that psychological challenges faced in long-term
survivorshiparenotaddressedinisolationandindividual
impact is acknowledged.
Many European countries include referral pathways to
psychologicalsupportincancercareguidelineshowever,
this is not always the case in the UK. For example,
lung cancer guidelines do not include psychological
assessment, referral pathways to psychological support
or mention psychological burden.3
Existing guidance
relating to the supportive and palliative care for adults
with cancer was published by the National Institute for
Health and Care Excellence (NICE) in 2004.4
Since then,
the cancer treatment landscape has seen significant
advances with earlier diagnosis and improved survival
rates alongside changes within the wider environment
including the advent of social media and other digital
resources.
The ‘Psychological Support for Patients Living with
Cancer - Patient Workshop’ aimed to identify the
uniting, unmet psychological needs of people living with
and beyond cancer. The workshop found the following
key themes:
• Prioritising quality of life (QoL)
• Challenge of re-introduction to the community
following treatment
• The impact of cancer on families and carers
When addressing the provision of psychological support
and ways in which current services could be improved,
the following areas were discussed:
• Integrating psychological support into
the treatment pathway
• Improving timing and communication
• Securing timely support
• Acknowledging differences
• Getting support for families and carers
The wider environment, existing initiatives and the
resulting workshop learnings will help inform MSD’s
wider understanding of this topic and help to shape
future planning regarding MSD’s contribution to
support the psychological well-being of patients living
with and beyond cancer.
Thenumbersofpeoplediagnosedwithandlivingbeyond
cancer are increasing every year. In the UK, one in two
people will be diagnosed with cancer in their lifetime5
and right now, more than half of people diagnosed
will live ten years or more,2
defining many cancers as
‘long-term’ conditions.6
An ageing population, earlier
diagnoses and advances in innovative treatments, are
all key factors in contributing to this long-term cancer
survivorship increase. Continuing its rapid growth
trajectory, approximately four million people in the
UK are expected to be living with cancer by 2030, with
an average survival of more than ten years, as per
Figure 1.7
Similarly, the NHS Long Term Plan predicts
that by 2028, an additional 55,000 people each year
will survive for five years or more following their cancer
diagnosis.8
According to the Healthy London Partnership, one
in two people with cancer also experience at least
one mental health issue.9
Considering the increasing
number of people living with and beyond cancer, this
suggests the number of people requiring some form
of psychological support as part of their treatment
pathway will continue to grow in parallel. This presents
health and care services with the challenge of delivering
sustainable and individual support to a relatively
new and growing patient population. While not an
exhaustive audit, this section provides an overview of
the current guidelines and recommendations published
in relation to psychological support for people living
with and beyond cancer in the UK.
CONFIDENTIAL
1990 20301970
Cancer is mostly about
dying from cancer
2015
Average survival 1 year
2010 onwards
Cancer is increasingly
about living with cancer
1.2mLiving with cancer
59% aged 65+
2.5mLiving with cancer
66% aged 65+
4mLiving with cancer
78% aged 65+
The changing cancer story
Average survival 2 year Average survival 10 year Average survival 10+ year
SECTION 1.
OVERVIEW OF THE CURRENT PSYCHOLOGICAL
SUPPORT AVAILABLE FOR PEOPLE LIVING
WITH AND BEYOND CANCER

5. 04 05
FIGURE 2 -
NICE FOUR-LEVEL MODEL OF PROFESSIONAL PSYCHOLOGICAL ASSESSMENT AND SUPPORT
Adapted from NICE’s guidance on Improving Supportive and Palliative Care for Adults with Cancer
RECOMMENDED MODEL OF PROFESSIONAL PSYCHOLOGICAL ASSESSMENT AND SUPPORT
1.1.1. THE NICE FOUR-LEVEL MODEL
OF PSYCHOLOGICAL SUPPORT
1.1. THE NATIONAL INSTITUTE FOR HEALTH
AND CARE EXCELLENCE (NICE) GUIDANCE
Health and social care professionals often lack
appropriate assessment skills to identify mental
illness and may underestimate the benefits of
formalised psychological support.4
Psycho-social
oncology departments can often be understaffed,
under-funded and uncoordinated, while primary
care staff can be over-burdened and, therefore,
psychological issues can be overlooked. 10
A four-tier model of psychological assessment and
support for all patients with cancer and their families is
recommended within the NICE guidance.4
Themodelhasbeendevelopedtoensurethatallpatients
undergo systematic psychological assessment at key
points in the patient pathway (time of diagnosis, during
treatment,astreatmentendsanduponrecurrence),and
have access to appropriate psychological support. The
model also outlines the role of healthcare professionals
in assessing psychological needs and appropriate
interventions, as per Figure 2.
The model suggests that staff at level two, such as
nurses, doctors, and allied health professionals, should
be proficient at screening for psychological distress
and intervening with techniques, such as psycho-
education and problem solving. For the four-tier model
of psychological support to function effectively, health
and social care professionals directly responsible for the
care of people living with and beyond cancer, currently
provide a significant element of patient support.
The four-tier model of psychological support ensures
that staff operating at higher specialist levels (three
and four) must be qualified to train staff at levels one
and two, to ensure they have the appropriate skills to
perform their roles and deliver appropriate care, and
have overall responsibility to lead psychological care
across each cancer network.
The National Institute for Health and Care
Excellence (NICE) guidance ‘Improving Supportive
and Palliative Care for Adults with Cancer’ (2004) sets
out recommendations for arranging psychological
services, as well as rehabilitation services, workforce
development recommendations and services for people
with cancer and their families and carers.4
There has
been no update to this guidance following its
publication in 2004 and it continues to provide the
recommendations for psycho-oncology services in the
UK, acknowledging that psychological distress is a
common experience for people with cancer.4
The guidance outlines the following recommendations
specifically in relation to the provision of psychological
services:
• The psychological well-being of patients/carers
should be explicitly assessed at key points in the
pathway
• The guidance highlights diagnosis,
completion of treatment and at recurrence
as key points
• Psychological assessments and interventions
should be undertaken in facilities that are quiet,
comfortable and private
• Patient and carers found to have significant
levels of psychological distress should be offered
prompt referral to specialist psychological care
services
• All staff directly responsible for patient care
should offer general emotional support based
on skilled communication, effective information
provision, courtesy and respect
• Staff providing psychological care should
be adequately trained and supervised, and
mechanisms to ensure support should be
available
• Emergency psychiatric services should be
available when necessary
The guidance recommends that commissioners and
providers of cancer services should ensure all patients
receive systematic psychological assessment and are
offered access to appropriate psychological support, for
which a four-level model of professional psychological
assessment and intervention has been proposed.4
Level Group Assessment Intervention
1 All health and
social care
professionals
Recognition of
psychological
needs
Effective information giving, compassionate
communication and general psychological
support
2 Health and
social care
professionals
with additional
expertise
Screening for
psychological
distress
Psychological techniques such as problem
solving
3 Trained and
accredited
professionals
Assessed for
psychological
distress and
diagnosis
of some
psychopathology
Counselling and specific psychological
interventions such as anxiety management
and solution-focused therapy, delivered
according to an explicit theoretical framework
4 Mental health
specialists
Diagnosis of
psychopathology
Specialist psychological and psychiatric
interventions such as psychotherapy,
including cognitive behavioural therapy (CBT)
SELFHELPANDINFORMALSUPPORT

6. 06 07
1.4. THE NHS LONG TERM PLAN1.2. THE MACMILLAN CANCER
CARE RECOVERY PACKAGE
1.3. NHS ENGLAND QUALITY OF LIFE (QOL)
METRIC
1.5. SIGNPOSTING AND ACCESSIBILITY
The NHS Long Term Plan (2019) outlines objectives to
improve cancer outcomes and services in England over
the next ten years.8
Specifically in relation to cancer, it
addresses its key ambition that by 2028 the proportion
of earlier cancer diagnoses (stage I and II) will rise from
around half to three-quarters, increasing the chance of
long-termsurvivalforthesepatients.8
Whilenotdirectly
addressingprovisionofpsychologicalsupportforpeople
experiencing long-term cancer survival, the Long Term
Plan does commit that by 2021, where appropriate,
every person diagnosed with cancer will have access to
personalised care, including a needs assessment, care
plan and health and wellbeing information and support,
delivered in line with the NHS Comprehensive Model for
Personalised Care.8
Similarly, after treatment, patients
will move to a follow-up pathway that suits their needs
and ensures they get rapid access to clinical support
where they are worried that their cancer may have
recurred.
Further guidance is clearly required in this area, however
with the Long-Term Plan referencing the pending
introduction of the QoL metric, it is encouraging that
the psychological and emotional needs of people living
with and beyond cancer are being formally recognised
and prioritised.
The Macmillan Cancer Care Recovery Package (2013)
was developed by the National Cancer Survivorship
Initiative (NCSI) and Macmillan Cancer Support to
provide recommendations on key interventions which,
when delivered together, can improve outcomes for
people living with and beyond cancer.11
The package
comprises of four key interventions to support a self-
managed and patient-centred approach to the impact
of cancer and its treatment, including the Holistic Needs
Assessment (HNA), Treatment Summaries, Cancer
Care Review and Health and Wellbeing Events.
The Transforming Cancer Services Team (TCST) report
‘The psychological impact of cancer’ noted a number of
key considerations in relation to the Recovery Package
including that evaluation should be planned beyond
quantitative measures (for example, how many HNAs
are completed) and include the impact on QoL, follow-
up care, patient experience and emotional wellbeing. As
well as effective use of the Recovery Package, the TCST
also noted greater focus on effective communication
and partnerships across the pathway are needed in
order to improve the mental health of those affected
by cancer.12
Considering the current psychological support
landscape, and the recognition that QoL outcomes are
as important as survival to people living with and beyond
cancer, QoL is clearly a critical factor to be considered in
order to improve patient experience and support.
NHS England are currently working to pioneer a national
QoL metric which will enable better evaluation of long-
term QoL after cancer treatment.13
For the first time,
there will be a measure which will capture how effective
cancer support is and where the gaps may be in terms of
service improvement. This could represent a promising
step for people living with and beyond cancer as it may
help to prioritise patients’ psychological and emotional
well-being at the same level as physical outcomes.
By providing an indication of how well people are living
after cancer treatment and not just how long they are
alive, the QoL metric marks progress in recognising the
important of viewing the person as an individual, not a
patient, moving away from an impersonal, quantitative
system and towards a personalised approach. The pilot
project report with recommendations for future roll-
out activities is due in late 2019.
Since the publication of the NICE guidance in 2004,
much has changed in the provision of cancer care;
from advances in treatments and support, to the
wider environment, i.e. the advent of social media and
other digital resources. As this generation of people
experiencing long-term cancer survival grows, more
is understood about the unique challenges they face
which, until recently, have not been addressed in
support and care provisions. The NICE guidance is a
well-established framework amongst service providers
and, in addition, the 2018 TCST report outlines its
recommendations for an integrated system including
a support pathway and service specifications for adults
affected by cancer through the whole pathway, from
diagnosis, through treatment, to those living with and
beyond cancer.12
Numerous groups and services now exist which can
provide a range of support for people throughout
the pathway, although few specifically focus on the
psychological impact of long-term cancer survival.
Patient advocacy groups, charities and other support
communities are key resources which, for many, present
invaluable opportunities to develop relationships with
people experiencing similar challenges. While many
continue to benefit from these groups, the challenge
remains for the need for clearer signposting to the most
relevant support system at the right time, based on the
individual’s needs.
An example of an initiative looking to improve
signposting for people living with and beyond
cancer is the Macmillan Cancer Navigators, a service
developed by Macmillan Cancer Support in partnership
with Imperial College Healthcare NHS Trust.14,15
This initiative aims to connect and strengthen support
to allow streamlined care for cancer patients, by
providing a single point of contact to help guide each
person with cancer through all points across the cancer
pathway. This represents a promising step in moving
towards fully integrated cancer services and more
effective sharing of information between different care
professionals.15

7. 08 09
A meeting titled ’Psychological support for patients
living with cancer – patient workshop’ was held on
Thursday 11th
July 2019 and was facilitated by Dr Alex
King, Consultant Clinical Psychologist and Lead for
Psycho-Oncology at Imperial College Healthcare NHS.
Workshop attendees included five people who have
advanced cancer, are experiencing long-term survival
and are vocal within their own cancer communities.
An MSD representative provided an overview of the
company’s wider mission in oncology and described the
goals of the workshop, including the need for MSD to
better understand the psychological needs of those
affected by cancer to identify how these could be better
met, so that MSD can play a positive and proactive role
in improving the patient experience.
Following welcome and introductions, the workshop
covered the following topics:
• Attendees’ personal experience of cancer, its
treatment and psychological challenges
• Attendees were asked to:
• Describe the psychological support they
have received, if any, and outline what
psychological support means to them
• Reflect on their experience with support and
outline what they may have done differently
• Define what would deem ‘good-enough’
psychological support
• Outline what changes they would like to
see in the current provision of psychological
support for people living with and beyond
cancer
2.1. WORKSHOP PARTICIPANTS
SECTION 2.
PATIENT WORKSHOP: PSYCHOLOGICAL
SUPPORT FOR PATIENTS LIVING WITH CANCER
Anita Brown: Living with and beyond
neuroendocrine, small cell bladder cancer,
diagnosed 2016
Treatment: Transurethral resection of bladder
tumour (TURBT), chemotherapy, cystectomy
Psychological impact of her cancer: Anita had
no specific psychological treatment for her rare
form of cancer which has contributed to feeling
that she does not ‘belong’ to a community
Patient advocacy work: Anita writes a blog My
Big Fat British Bladder Tumour to share her
story and educate others on her cancer. She has
spoken on behalf of Macmillan Cancer Support
and at the All-Party Parliamentary Group on
Cancer’s annual conference
Chris Curtis: Living with and beyond tongue
cancer, diagnosed 2011
Treatment: Chemotherapy, radiotherapy, two
neck dissections and was fed by a percutaneous
endoscopic gastrostomy (PEG) for three years
Psychological impact of his cancer: Chris
experienced many side effects as a result of
his cancer/treatment, including difficulties
eating, dry mouth, and dissection scarring.
Chris described times where he felt utterly
overwhelmed and hopeless, thinking his life
was not worth living. It took Chris considerable
time and effort to work through this. He
now continues to experience persistent and
disruptive treatment consequences, which he
has learnt to tolerate. He continues to receive
annual check-ups and experiences anxiety
in the lead up to these checks, as well as the
constant fear of recurrence
Patient advocacy work: Chris set up The
Swallows Group, an international support group
charity, to drive awareness of the disease. Chris
recognised the value of peer-to-peer support
and the group supports over 7,000 patients
globally and offers a 24/7 support line
Adrian Markwell: Living with and beyond
malignant melanoma, diagnosed 2009
Treatment: Multiple local excisions including
original mole and numerous lumps on edges of
the surgery scars, skin graft, chemotherapy,
immunotherapy
Psychological impact of his cancer: Despite
multiple excisions of moles, Adrian did not
‘feel’ he had cancer until 2017, nine years after
his diagnosis. Adrian accessed treatment via
private healthcare and described the lack of
team consistency and isolation during his
treatment experience
Patient advocacy work: Adrian is proactive in
the melanoma community and uses his social
media accounts to drive awareness of his
condition and treatment
Lucy Davis: Living with and beyond stage III/IV
melanoma, diagnosed 2011
Treatment: Surgery to remove melanoma and
lymph nodes, chemotherapy, immunotherapy,
targeted therapies
Psychological impact of her cancer: After
experiencing a delay in treatment, Lucy
progressed to stage IV and has experienced
multiple episodes of recurrence. She has
undergone large amounts of treatment and
experiences anxiety when approaching check-
ups and scans. A mother to two young sons, she
always wants to reach ‘the next milestone’
Patient advocacy work: Lucy is an active
member of the melanoma community, writing
her blog LucysMelanomaAdventure and is
admin to the Melanomamates Facebook page.
She is also part of the Melanoma Patient
Network Europe (MPNE)
Mavis Nye: Living with and beyond
mesothelioma, diagnosed 2009
Treatment: Chemotherapy, immunotherapy
Psychological impact of her cancer: Mavis did
not specify psychological challenges she has
experienced, stating that she did not wish to
dwell on the negative impact of cancer on her
emotional well-being
Patient advocacy work: Mavis set up the
Mavis Nye Foundation and the Meso Warriors
Facebook page to support patients around the
world. Mavis and her husband Ray received
honorary doctorates from the University of
Kent in July 2019 for their work in promoting
awareness of mesothelioma

8. 10 11
SECTION 3.
WORKSHOP DISCUSSION: THE PSYCHOLOGICAL
IMPACT OF LIVING WITH AND BEYOND CANCER
Accepting a cancer diagnosis can ignite a range of
emotions for patients; from sadness, anxiety and
anger, to guilt and isolation.18
Further along the patient
pathway at long-term survival, attendees discussed the
acceptance of cancer’s impact on their everyday lives,
with terms such as ‘the new normal’ being used and the
need to forge a ‘new identity’. Attendees described a
range of experiences including disassociation with their
cancerandfeelingpressuretobe‘brave,positiveandOK’
once they exhibited no evidence of disease (NED) i.e. no
‘active cancer’. One attendee detailed the consequences
of having a stoma, including the psychological impact of
its potential to leak in public and the daily effect it has on
her bathroom visits and her sleep.
With the growing population of people living with
and beyond cancer, comes the need to consider the
long-term physical and psychological consequences
of living beyond previous prognoses and undergoing
active treatment. In terms of physical needs, there is
significant evidence that people feel these are given
more attention than psychological needs. 58% of
people with cancer feel their emotional needs are not
looked after as much as their physical needs,16
and even
ten years after treatment, 54% of people affected by
cancer still suffer from at least one psychological issue.17
The wider psychological impact of cancer needs to be
identified and addressed, not only at diagnosis, during
or at the end of treatment, but also during extended
life expectancy that many patients may not have
anticipated upon their diagnosis.
Furthermore, as the need for dedicated psychological
supportservicesforlong-termcancersurvivalincreases,
so do the challenges faced by these services. As such,
there is a need to identify new ways in which services
could provide sustainable support to meet the needs of
this relatively new patient demographic.
The range and complexity of these psychological
challenges are ever-growing and can differ significantly
between each individual experiencing long-term
cancer survival. From tumour type, stage and rarity
of their cancer, to an individual’s lifestyle and external
circumstances, there are infinite combinations of
experiences and potential psychological impact.
With this large scope in mind, the purpose of MSD’s
workshop was to identify the shared experiences
and key overarching psychological challenges of all
attendees and distinguish potential opportunities to
initiate change to improve the patient experience.
3.1. IMPACT ON QUALITY OF LIFE
The TCST report, ‘The psychological impact of cancer’,
states that ‘focusing on extending life has to be
considered within the context of quality of life.’12
Quality of life (QoL) was a key priority for many of the
attendees who discussed the impact that their cancer,
and subsequent treatment, had on their QoL.
“Survivorship is not survivorship
without quality of life.”
“Even during appointments with my
oncologists, going through scans, having
moles removed, [the cancer] was
always happening to ‘someone else.’”
“You always want to reach the next
milestone whether that be your child
starting school, to the next Christmas.
Once you do, the goalposts always move.
You always want part of your future.”
“Everything is played down in bladder
cancer. On social media forums, people
post about their upcoming RCs [radical
cystectomy] and people reply, ‘you’ll be
fine’, despite it being a major operation.
It’s all about QoL, So I chose to
have my bladder out.”
“I never want healthcare professionals to stop
driving to cure cancer, but what they have to do is
put some real thought and effort around the quality
of life in survivorship. All cancers can come together
and change that attitude - it’s only us who survive
that really know, not people currently going through
it or treating”
“Every twinge, every ache, every pain,
could it be a tumour? That feeling is
with you every single day. Is this going
to be my last Christmas, last birthday,
last time I do ‘this’? We all know [the
cancer] is coming back at some point.
You can go live your life as much as
possible but that is the elephant
in the room.”
Unsurprisingly, fear of cancer recurrence (FCR) or
cancer progression is one of the most frequent,
distressing psychological symptoms among those living
with and beyond cancer19
and a common experience for
which professional support is often sought. With many
of the workshop attendees living beyond their original
prognosis, they stated that everything in their lives
relates back to the concern that the cancer may recur
which, in turn, can significantly impact their QoL.
Many attendees discussed the feelings of ‘survivor’s
guilt’ and agreed that as they do not exhibit ‘typical’
signs that they have cancer or are undergoing
treatment, they felt the impact of surviving cancer
can be ‘invisible’. Throughout the workshop, QoL was
cited as a key measurement against which provision of
psychological treatment should be based.

9. 12 13
3.2. CHALLENGE OF RE-INTRODUCTION
TO THE COMMUNITY
Uponcompletionofcancertreatment,patientscanfeela
range of emotions from relief to sadness and isolation.20
This was a key point of the cancer pathway discussed
during the workshop, where many had experienced
feelings of uncertainty and vulnerability following their
final consultations with their oncologists and other
healthcare professionals. After these consultations,
many felt their only option was to ‘get on with and live
their lives’. It is critical, however, to acknowledge that
experiencing remission or NED is not synonymous
with being free of physical and psychosocial challenges
related to the cancer and its treatment.21
While many
attendees felt that, societally, completion of treatment
should be met with celebration, the psychological
consequences of their treatment and the disease itself
remained, along with the anticipation of future impact.
In terms of their re-introduction into the community
following cancer treatment, attendees discussed how
they felt this view of ‘getting on with life’ was too
simplistic. For many, they felt this was not possible
given the individual challenges they faced throughout
their cancer experience meant they were ‘no longer the
same people’ as they were before cancer. Terms such
as ‘limbo land’ were used to describe this period, where
many attendees experienced a lack of clear signposting
to potential sources of psychological support, post-
treatment.
“It’s only when treatment stops,
that we can really process what
has happened to us”
3.3. IMPACT ON CARERS AND FAMILIES
As the number of people living with and beyond
cancer continues to grow, so does the impact on
those supporting and caring for them. The number of
cancer carers in the UK has risen to almost 1.5 million
in 2016 and up to 70% of those who identify as a carer,
experience one or more issues with their emotional
wellbeing or mental health, with stress, anxiety,
depression and isolation being the most prominent.22
In
addition, more than half of carers (55%) do not receive
any kind of formal or informal support for themselves, a
figure which has not improved since 2011.22
The workshop attendees discussed that the impact
of cancer on carers and families, in turn, can present
additional pressures to the patients themselves.
Many discussed the feelings of guilt and wishing they
had proactively sought support for both themselves
and their carers and families throughout their cancer
journey.
“When I was diagnosed, everything
became about me; appointments,
scans, treatments. I wish I had got
psychological support for my wife as
she was going through everything just
as much as me, but in a different way”
“I feel so guilty when my husband comes
home exhausted from work every day,
but there is nothing I can do to help him.”

10. 14 15
4.2. ADDRESSING SPECIFIC CHALLENGES
4.1. SHARING EXPERIENCES
WITH THE COMMUNITY
Attendees sought psychological support for a range of
different reasons and often for one specific challenge,
rather than seeking an overall psychological assessment
to determine areas of potential concern. One attendee
sought psychologist support as they were being
re-introduced to eating after three years using a
percutaneous endoscopic gastrostomy tube (PEG).
The psychological support guided him to accept that
his brain no longer sent him hunger signals and how to
help his muscles re-learn how to swallow. He said the
hospital stated that without this support, he may have
remained on a PEG indefinitely or, once removed, would
have been unable to return to eating orally without
psychological support.
In addition, attendees sought psychological support at
different points during their individual journeys. This
ranged from one attendee who sought support upon
her initial diagnosis which she found incredibly useful in
helping her navigate the first few days post-diagnosis,
to those who are now seeking support many years after
receiving their initial diagnosis for the resulting impact
of the cancer and treatment.
Amongst the attendees, experiences of psychological
support ranged from those who said they had not
received any, to those who are now actively seeking
support from a psychotherapist, many years after
their diagnosis. Those who had not received any
support attributed this to their resistance to talk
about this aspect of their experience and not wanting
to request help; as they are ‘in charge of their own
story’. Many explained how their first priority was to
address the physical cancer, rather than ‘dwelling’ on
the psychological impact of a diagnosis. They explained
that they dealt with their own psychological challenges
by adopting a positive outlook and proactive approach
in communicating their story through their patient
advocacy work.
This resonated with all attendees who are all proactive
in their own cancer communities; ranging from those
leading support groups, to those who regularly support
these groups and speak on their behalf at national and
international conferences. All attendees discussed
the supportive relationships they have formed within
their own cancer communities through groups such
as Macmillan Cancer Support, The Swallows Group,
Melanoma Support Network and Meso Warriors.
Attendees described that much of the support sought
through these groups was peer-to-peer, rather than
from healthcare professionals.
Many of the attendees are proactive in writing blogs and
sharing their experiences on social media platforms.
One attendee described writing her blog as ‘incredibly
cathartic’ and uses the writing process to explore her
underlying feelings surrounding her condition, ranging
from anxiety ahead of scans to relief when she received
positive results. She acknowledges that while writing
does not change her circumstances physically, it does
help her reframe the challenges she faces and identify
things she can do to improve her everyday life.
“My family and friends have been so incredibly
supportive but it’s my melanoma friends who are
the only ones who really understand what I’m
going through. We’re all approaching our five-
year milestone, which for stage IV melanoma, was
impossible five-and-a-half years ago. They do feel
like family.”
“I realised through writing my blog that
there are things I can do day-to-day to
treat myself a bit better and accept
that I don’t have a ‘normal’ life or the
life I used to have. I don’t want to get to
the end of the week and feel it was a
‘nothing-ness’ week. I don’t have to write
about anything major, it’s just about
appreciating the smaller moments.”
SECTION 4.
WORKSHOP DISCUSSION: HOW DO PEOPLE
LIVING WITH AND BEYOND CANCER SEEK
PSYCHOLOGICAL SUPPORT?
In this report, several key themes relating to the
psychological impact of cancer have been identified. In
this section, the real-world insights from the workshop
inrelationtoattendees’ownexperienceofpsychological
support are shared and used to determine whether the
support currently available meets the ever-growing and
ever-evolving needs of people living with and beyond
cancer.
It is key to note that the five workshop attendees
were invited based on their proactive and vocal
roles within their own cancer communities. It
is critical therefore to acknowledge that those
living with and beyond cancer who may not be
as vocal and may have differing experiences in
terms of their access to psychological support.
ATTENDEE PROFILES:

11. 16 17
4.4. ACCESSING ‘SAFETY IN THE SYSTEM’
Many of the attendees discussed feeling safer when
receiving treatment and attending hospital. Hospitals
were described as a ‘safe environment’ by attendees
where they felt they would receive the right, mainly
physical support. Attendees discussed how seeing
a number of specialists relating to their individual
needs (i.e. oncologist, dietician, speech and language
therapist) in close succession whilst attending hospital
had produced feelings of proactivity and security,
supporting their emotional well-being.
In contrast to patients in the NHS who had potential
support through peers undergoing treatment at the
same time, one attendee discussed his experience
receiving his treatment privately. He described that, as
all elements of his treatment were organised separately,
he felt that he had not experienced the feeling of
support from a full team and did not have a single point
of contact around which his care could be coordinated.
“I’m not psychologically happy unless
I’m actively on treatment – nothing can
replace that feeling of safety. Otherwise,
you’re going to be left to die.”
“I always felt much safer when I was
in hospital. That’s why I don’t like to
see feedback questionnaires being done
in hospitals. If you asked those questions
at home, you would get very different
responses.”
“I found having chemotherapy
via private care an incredibly lonely
experience. It got to the point where I
would check myself in and see myself
out once my treatment was complete. I
didn’t get the same sense of community
that I might have got via the NHS.
All of my care is on my own.”
4.3. DISTINGUISHING EXPLICIT/IMPLICIT
PSYCHOLOGICAL SUPPORT
Clinical Nurse Specialists (CNSs) play a critical role
within the Multidisciplinary Team (MDT) in improving
the experience of people living with and beyond cancer.
Working across many different elements of care
provision, including delivery of information and co-
ordination of care, the CNS role may need to adapt over
time to reflect new treatments and changes in patients’
needs.23
In terms of psychological care, providing
support for patients experiencing emotional distress is
also a key component of the CNS role.23
When discussing the support received from CNSs,
many attendees agreed that they had built successful
relationships and that their CNS had provided
invaluable support throughout their cancer pathway.
Interestingly, those that had a CNS stated that they did
not necessarily perceive this as explicit psychological
support, perhaps due to the role’s multi-faceted nature.
In comparison, those attendees who had undergone
treatment privately stated that they were not
allocated a CNS to coordinate their care, and as such,
did not benefit from this potential additional source of
psychological support.
“My CNS was my angel, and she still is
to this day. I could tell her anything, she
would never judge me, and I never felt
that I was a ‘number’.”
“I didn’t think about my CNS in terms of
psychological support. They’re there as a
nurse, not a psychologist.”

12. 18 19
5.1. INTEGRATING PSYCHOLOGICAL
SUPPORT AS PART OF THE PATHWAY
SECTION 5.
WORKSHOP DISCUSSION: WHAT SHOULD
PSYCHOLOGICAL SUPPORT LOOK LIKE FOR
PEOPLE LIVING WITH AND BEYOND CANCER?
After considering the experiences of psychological support received by attendees, the focus shifted to what
attendees would define as ‘good psychological support’ and what could be improved in the current service
provisions. The following topics were discussed:
Attendeesbelievedthatpsychologicalsupportshouldbe
an integral part of the cancer pathway. From diagnosis
through to survivorship and end-of-life care, attendees
felt a psychologist would have an invaluable role in
supporting patients navigate through these periods,
addressing both specific and general challenges.
Throughout the pathway, people with cancer should be
actively informed of the potential need for psychological
support and given guidance on access and availability.
“Psychological care needs to be part of
the treatment pathways, alongside my
speech and language therapist, dietician,
consultant and CNS. Why isn’t there a
psychologist as part of my team?”
Updated guidance on the provision of integrated
psychological care to patients living with and beyond
cancer should be prioritised. QoL measurement
couldprovideaclearmetrictohighlightpsychological
needs alongside physical needs, and drive service
development. New approaches to psychological
support, including digital and other resources,
could play a useful role in guiding patients on
access and availability of sources of cancer-focused
psychological care.
In people living with and beyond cancer,
psychological adjustments are not a linear,
predictablejourney,ratherahighlyindividualprocess
for the person and their context. It is important
to have clear, prompt and efficient mechanisms
for patients to seek help as and when needed.
Tools such as the Health Needs Assessment (HNA),
repeated at key points in the pathway, are a timely
prompt to patients who may still not feel able to
seek care proactively.
INSIGHT:
INSIGHT:
5.2. IMPROVING TIMING AND COMMUNICATION
Ideal timing of when psychological support was thought
to be most needed or beneficial, differed between each
individual. One attendee discussed how, based on her
experience, immediate support in the days following a
diagnosis may be too soon, not giving enough time to
process new information and prioritise other factors
beyond the psychological impact of the diagnosis.
Similarly, attendees discussed the emphasis placed
on a patient’s prognosis at the point of diagnosis,
which can cause distress when ‘time left’ is the focus
rather than the potential length of survivorship. Many
attendees shared their experience of receiving a very
specific prognosis and, in some cases, were advised to
‘ensure their affairs were in order’ and say goodbye to
loved ones. All attendees who shared this insight had
well out-lived these prognoses, and felt the emphasis
placed on these timings caused unnecessary distress
and subsequent negative psychological impact.

13. 20 21
5.4. SHARING EXPERIENCES
WITH THE COMMUNITY
5.5. GETTING SUPPORT FOR
FAMILIES AND CARERS
Attendees acknowledged the difficulties healthcare
professionals face in providing adequate psychological
support for all people experiencing cancer and long-
term cancer survivorship, as there is no ‘one fix’ solution.
From exercise to mindfulness, individuals living with
or beyond cancer have differing views of the value of
restorative activities, relating to them individually and
benefitting from some and not others.
Attendees discussed that often people living with and
beyond cancer do not know what support they may need
or when they may need it. The advent of new feelings
based on the unknown territory of living beyond cancer,
can often only be recognised weeks later when those
feelings, and why they have occurred, can be processed.
All attendees agreed that psychological support should
be available to families and carers, the needs of which
should be assessed on an ongoing basis. All challenges
raised in this report are equally applicable to those
supporting and caring for people living with cancer,
but through different perspectives, and so the impact
of cancer on carers and families can result in additional
challenges to patients. In addition, as a result of an
ageing population, those living with cancer can also be
carers for others themselves. This group were raised
as priority individuals for whom support should be
recommended and sourced.
5.3. SECURING TIMELY SUPPORT
The availability of timely, expert support could be hugely
beneficial to people experiencing long-term cancer
survivorship. Attendees described facing 12-week
waiting lists before receiving psychological support via
the NHS. Although, based on current service resourcing,
this was perceived as relatively quick, attendees felt a
faster, more instant source of support was needed to
address immediate challenges and issues.
Dedicated social media groups, such as Meso Warriors,
do provide round-the-clock support as they are an
international community enabling people with cancer to
discuss challenges peer-to-peer with people around the
world 24/7.
“This is not a Monday-to-Friday, 9-to-
5 issue. Most of the calls we receive to
our 24/7 support line are between 11pm to
5am, over weekends and bank holidays.”
“Sometimes you want a professional to
just be available to listen, not necessarily
to wave a magic wand, but just tell you
that what you’re feeling is normal.”
“What fixes me doesn’t fix you and
what fixes you doesn’t fix me. The
service just has to be there for the
person when they need it, however
they need it, for whatever reason.”
“When I need [support], I don’t want
to wait an hour or a day, I want to
talk to someone.”
Attendees felt that 24/7 access to support would
be valuable however, in practice, current service
capacity, where significant waiting times are
the reality, would make this difficult to provide.
Improving the current system to respond during
moments of crisis (physical, psychological etc.)
with appropriate promptness and in a reasonable
timeframe, is needed.
Individuals would benefit from having access to a range of emotional and psychological support according
to their individual needs. Healthcare professionals with the right training (e.g. level two psychological
skills) and the right tools (e.g. HNA) could skilfully and flexibly guide people to reflect on their ongoing
adjustments and identify areas of strength, as well as areas of need.
Carers and families are also psychologically impacted by cancer and would benefit from regular support.
Bringing patients and carers together to discuss their challenges could help ensure the psychological well-
being not only of the patient but also for those that support them.
INSIGHT:
INSIGHT:
INSIGHT:

14. 22 23
SECTION 6.
CONCLUSIONS
REFERENCES
With the growing number of people living with and
beyond cancer, the disease is increasingly being
described as a ‘long-term’ condition.6,24
As earlier
diagnosis and newer treatments improve the cancer
landscape, a significant shift in health and care
provisions is necessary in order to address the unmet
psychological needs of this relatively new community of
people experiencing long-term survivorship.
Since the publication of the NICE guidelines, additional
guidance has been developed which looks at the
provision of psychological cancer care; some of which
recommend an integrated support system from
diagnosis, through treatment, and to living with and
beyond cancer. It is promising to see the psychological
and emotional impact of cancer being prioritised
alongside physical needs through NHS England’s QoL
metric, the implementation and impact of which is yet
to be determined.
Disparity exists in the way people living with and
beyond cancer access psychological support with some
not receiving any support, to those seeking support
many years after diagnosis to address issues that
occurred during their cancer journey. The experience of
workshop attendees demonstrates that those adopting
a proactive approach in seeking treatment options or
psychological support have benefitted. However, those
less vocal or confident in requesting support also need
to be recognised. The real-world experiences gathered
from the workshop have demonstrated that a patient’s
whole journey affects their psychological needs and, as
such, the impact seen at long-term survivorship should
not be addressed in isolation.
The aim of the patient workshop was to gather insights
from people experiencing long-term cancer survival
and identify the uniting, unmet psychological needs of
people living with and beyond cancer. Looking to the
future, discussion from the workshop has highlighted
the shared experiences of individuals and where there
could be potential benefit from improved access to
psychological support. These findings, alongside the
current environment insights and existing initiatives,
provides invaluable learnings to help inform future
activities in this area.
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MSD is committed to supporting the psychological well-being of people affected by cancer and encourage
serviceprovidersanduserstocontactMSDtolearnmoreabouttheprojectandshareanyactivityofinterest.
For more information, or to discuss opportunities for partnership, please contact:
Allona McCloy, Director, Oncology Policy & Communications, MSD
Allona.McCloy@merck.com / 01992 467272

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