Craig Menzies Macmillan @ Glasgow Libraries Programme Manager - In focus - Macmillan Cancer Support
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For Macmillan Professionals | Issue 89 | Summer 2019 Craig Menzies Macmillan @ Glasgow Libraries Programme Manager In focus Men’s health Sharing good practice Social care
2 | Contents
Visit our website
Mac Voice is available to download as an
Welcome
interactive PDF at macmillan.org.uk/
macvoice. If you’d like to stop receiving Welcome to the Summer 2019 edition of Mac Voice.
a paper copy of Mac Voice, email
macvoice@macmillan.org.uk On the cover of this issue is Craig Menzies, Macmillan
Programme Manager for Macmillan @ Glasgow Life.
Writers wanted He explains how this library-based service has grown to
Mac Voice is for you. You can write about provide information and support to more than 15,000 people
the topics that matter to you and share your affected by cancer, and emphasises the vital contribution
knowledge with others. You don’t have to be of volunteers (page 8).
an experienced writer to get involved
– simply email macvoice@macmillan.org.uk You can read how Macmillan is working with insurance
or call 020 7840 4720.
company Aviva to help speed up insurance claims for people
with cancer on page 14. And on page 16, we find out how a
Contributors new programme in Harrogate is encouraging discussion on
Edlira Alku • Lindsey Allan • David Banks • choices for end of life care.
Leigh Brand • Jackie Brunton • Lisa Curtis •
Claire Davis • Michelle Forsyth • Sue Green •
Our In focus section is all about men’s health, from prostate
Chloe Jarvis • Dr Kath Lambert • Rebecca Mears
screening clinics in local football clubs, to health education
• Craig Menzies • Amy Peterson • Jyoti Shah
for men in prison and a new Look Good Feel Better
programme for men.
Editorial board
Rachel Coulter, Macmillan Marketing Manager,
Sharing good practice looks at the important impact of
Sarah Davies, Macmillan Information and
social care – including Macmillan’s work to support statutory
Support Facilitator • Linda Hough, Macmillan
Cancer Support and Information Service
services to better meet people’s social care needs. We also
Manager • Beverly Hurst, Macmillan Alumni highlight key learnings from social workers supporting people
Ambassador • Susan Llewelyn, Macmillan with cancer at the end of life.
Lead Cancer Nurse Wales • Lisa Love-Gould,
Macmillan Therapies Manager • Tracy Williams, Thank you so much to all the Macmillan professionals
Macmillan Cancer Content Manager who kindly gave us their feedback as part of our recent
communications survey. We reveal the results – and
Editorial team the winners of our fantastic prizes – on page 4.
Rachel Hunter • Genevieve Osei-Kuffuor •
Azmina Gulamhusein
The views expressed in Mac Voice do not necessarily
represent the views and policies of Macmillan Cancer
Support. Any references to websites, books and journals
do not necessarily imply endorsement from Macmillan
Cancer Support. Although we do our best to make sure Rachel Hunter
that all of the information in the magazine is accurate Managing Editor
and up-to-date, neither we, nor any other party involved
in producing the magazine will be liable for your use of
its content.
Printed using sustainable material. Please recycle.
© Macmillan Cancer Support, registered charity in
England and Wales (261017), Scotland (SC039907)
and the Isle of Man (604). MAC5772_0619
macmillan.org.uk/macvoice
Contents | 3
7 10-11
News Features
4-7 The results of the Macmillan professionals 10-11 A catering event for people with head and neck cancer
communications survey, a new video for people 12-13 Community cancer care in Buckinghamshire
with poor appetites and a scheme to provide 14-15 Our work with insurance company Aviva
pamper packs for people having chemotherapy 16-17 Encouraging patients and carers to think ahead
18-19 Speech and language therapy in palliative care
20 Identifying services to support health and wellbeing
22-27
Sharing good practice pull-out
Social care
In focus: Men’s health
22-27 Three professionals explain how they are
supporting men affected by cancer and raising
8-9 awareness of men’s health issues
Q&A Resources
8-9 Craig Menzies, Macmillan Programme Manager 28 New and updated information from Macmillan
macmillan.org.uk/macvoice
4 | News
Mac Voice survey results
Thank you to everyone who completed our survey about Mac Voice and other
communications for Macmillan professionals.
We had more than 550 responses, representing If you would like to share your thoughts about
around 6% of the Macmillan professionals Mac Voice, or to submit an article or idea, please
workforce. We heard from people working email us at macvoice@macmillan.org.uk
in a wide range of roles, including nurses,
information and support professionals, allied Congratulations to Michelle Bull, Macmillan
health professionals, benefits advisers, Integrated Cancer Care Team Project Lead,
counsellors, GPs and support workers. We who won a Boots No.7 hamper, and Abigail
have illustrated some of the findings below. Pudner, Macmillan Benefits Support Worker,
who won a £50 M&S voucher.
Your responses have provided valuable insight into
how you use Mac Voice and the sections you find
the most useful. We will be thinking about how we
can improve our content, and how we can make
sure that more professionals can access Mac Voice
in the way that works best for them.
read every
issue.
read some
issues.
read Mac
Voice online.
say Mac Voice has a
positive impact on the
service they provide
to people affected
by cancer.
macmillan.org.uk/macvoice
News | 5
New video on managing In brief
poor appetite
Breast screening programme review
A review of England’s breast screening
A new online resource is available to support people with programme commissioned last year has
cancer to manage poor appetites. now published its findings. The review was
co-chaired by Macmillan Chief Executive
Malnutrition and loss of muscle mass are extremely Lynda Thomas and calls for a ‘re-set’ of the
common in people undergoing treatment for cancer. breast screening programme. The full report
The incidence varies depending on tumour type, stage, and recommendations are available at gov.
treatment, and the degree of symptoms and side effects. uk/government/publications/independent-
Poor appetite and subsequent weight loss can lead to breast-screening-review-report
delays in treatment, as well as increased morbidity
and mortality. New Chairman appointed
On 1 May 2019 Richard Murley started in
Many people living with cancer, and their friends and post as Chairman of Macmillan’s Board of
families, turn to the internet for help during treatment. Trustees. Richard replaced Julia Palca, who
A recent Google search for ‘diet and cancer’ yielded 652 worked relentlessly to champion the needs
million hits, many of which are unregulated websites giving of people living with cancer during her nine
people contradictory advice and false hope. years in the position, as well as the role of
volunteering. Julia stepped down to take
Due to the increasing numbers of people diagnosed with the role of Chair of City University of London.
cancer in the UK, it is almost impossible for everyone to Richard has extensive experience across the
have evidenced-based, one-to-one advice from a registered finance, charity, legal and healthcare sectors
oncology dietitian. This is usually reserved for patients and was already a Macmillan Trustee. You
requiring support for tube feeds, swallowing difficulties, can find out more about Macmillan’s Trustees
pancreatic enzyme replacement therapy, stoma advice at macmillan.org.uk/about-us
or dietary management for bowel obstruction.
Newly branded covers
However, questions about diet are often among the Macmillan has started to roll out new covers
first questions that patients have, and other health for patient information booklets and leaflets
care professionals are in a position to provide in line with the refreshed brand launched
top-line information. last year. The new covers are based on
the findings of a survey sent to both health
In order to reach more patients, and provide extra help professionals and people living with and
for healthcare professionals, oncology dietitians at the St affected by cancer. We aim to ensure that the
Luke’s Cancer Centre (part of the Royal Surrey County photos used are as relevant as possible to the
Hospital in Guildford) have developed a new online topic covered in the information. The titles on
resource. the covers now appear in orange, teal, blue,
pink, and purple, as well as the recognisable
With sponsorship from Macmillan and help from the Macmillan green. If you spot the new covers
hospital graphics department, they have written and and would like to give us your feedback,
produced an animated video called What to do if you please contact Emma Welland
lose your appetite during cancer treatment. This is at ewelland@macmillan.org.uk
available at www.royalsurrey.nhs.uk/st-lukes/nutrition-
and-dietetics and on YouTube at www.youtube.com/
watch?v=N-70ISXF8y4
It provides detailed information and encouragement on
managing poor appetite, with tips for food fortification and
high energy recipe ideas, in line with the European Society
for Clinical Nutrition and Metabolism’s Guidelines on Nutrition
and Cancer. We hope that this will be a valuable resource for
anyone wanting to find evidence-based advice on managing
their diet during treatment.
macmillan.org.uk/macvoice
Macmillan outreach work raises
awareness of skin cancer
An update from Macmillan Skin Cancer Care Coordinator
Michelle Forsyth.
Skin cancer is preventable and often treatable, but early detection
remains paramount.
I am a Macmillan Skin Cancer Care Coordinator at Blackpool
What’s coming up? Teaching Hospitals NHS Foundation Trust. My role is to provide
support to clinical nurse specialists, patients and carers.
July The rising incidence of skin cancers on the Fylde Coast led the
Ethnic Minority Cancer Awareness Month skin cancer team to seek opportunities to work differently to raise
cancerequality.co.uk awareness of skin cancer and the importance of sun protection.
We have developed outreach work and educational sessions in
Sarcoma Awareness Month collaboration with the Karen Clifford skin cancer charity ‘Skcin’.
sarcoma.org.uk This has been a significant learning curve, and we have shared more
information about this work in the Winter 2017 edition of Mac Voice.
Health Information Week
1-7 July Following initial support by Macmillan, my post is now permanent
kfh.libraryservices.nhs.uk/patient-and-public- within the service. The role has allowed us to reach thousands of
information/health-information-week people by visiting places in the local community such as primary
schools, nurseries, colleges, hair, health and beauty professionals,
August outdoor workers and local councils.
Douglas Macmillan’s birthday
10 August The case of a council worker called Barry illustrates the impact of
macmillan.org.uk/about-us/who-we-are/ skin cancer awareness training. One of Barry’s colleagues attended a
organisation-history.html presentation I gave at Blackpool Council. Barry then asked for advice
from this colleague, who said that it looked as though he should get his
September mole checked. This led to Barry being diagnosed
Blood Cancer Awareness Month with a melanoma and getting timely treatment. He Further information
bloodwise.org.uk has since recovered well.
Childhood Cancer Awareness Month The trust is now seeing people attend fast-
childrenwithcancer.org.uk track appointments for worrisome lesions,
after attending an educational session in the
National Lymphoma Awareness Week community. This outreach work has been
9-15 September described as ‘invaluable to the skin cancer team’.
lymphoma-action.org.uk
The trust is currently implementing support
Head and Neck Cancer Awareness Week worker roles across various specialties.
16-20 September
Michelle Forsyth
makesensecampaign.eu Jackie Brunton, Lead Cancer Nurse, values
the contribution of cancer support workers to Macmillan Skin
Cancer Care
World’s Biggest Coffee Morning a clinical setting. She says, ‘Those services
Coordinator
27 September developing support worker roles are seeing a
coffee.macmillan.org.uk huge impact for patients, their loved ones and Blackpool Teaching
Hospitals
the teams they are supporting. One size does
not fit all, and roles are adapted to meet the Michelle.Forsyth@
individual service and team needs.’ bfwhospitals.nhs.uk
macmillan.org.uk/macvoice
News | 7
Pampering patients in the Tameside
Macmillan Unit
A new scheme provides ‘pamper bags’ for people starting chemotherapy treatment.
Mossley Cancer Committee, Amy made a request on social media
which raises money for local cancer for local individuals and companies
charities in Tameside and Glossop, to offer items at reduced rates. She
has launched a new scheme to put received a great response.
together pamper bags for people
beginning chemotherapy at the Mossley Cancer Committee was
Tameside Macmillan Unit. inspired by Amy’s idea and wanted
to continue offering the chemotherapy
The bags contain a variety of pamper bags for people at the Tameside
useful items, which can include: Macmillan Unit. The committee
celebrates its 50th birthday next year
• toiletries, such as body spray, and has supported the Tameside
hand cream, soap or mouthwash Macmillan Unit in many ways.
• self-care items, such as a nail file, When people go to hospital for their
tissues or wet wipes first chemotherapy session, it can be Katie receiving a pamper bag at the Tameside
a daunting experience. Some may Macmillan Unit.
• items to help keep occupied, such not know what items they will need.
as puzzle books, pens and a notepad Members of the Mossley Cancer
Committee thought carefully about
• small items of clothing to stay warm, this issue and made a list of what
such as a hat, a head scarf, gloves might be useful.
or socks
The committee buys the items from
• light refreshments, such as a bottle local shops and businesses, and are
of water, sweets or biscuits always open to new ideas for their list.
So far, they have given out about 200
• items to promote relaxation, such pamper bags and intend to carry on
as an eye mask for sleeping or a the scheme for many years to come.
lavender bag.
People visiting the Tameside Macmillan
The idea for the scheme started in Unit have been very appreciative. One
2016, when social worker Amy Longson patient said, ‘I was touched and grateful
wanted to do something for people that somebody cares enough to make
affected by cancer. Rather than signing such a generous gift’. Another patient
up for a traditional sponsored event, she explained that, when going through
explains, ‘I just thought it would be nice cancer treatment, ‘it is the little gifts and
to try and collect things to help people gestures that make all the difference’.
starting chemotherapy treatment.’
To find out more about the scheme,
visit tamesidemacmillan.co.uk/
pamper-bags
macmillan.org.uk/macvoice
Q&A: Craig Menzies What is Macmillan @ Glasgow Libraries?
The Macmillan @ Glasgow Libraries Programme
approaches access to cancer information and
Job title support in a unique, ambitious and innovative
Macmillan Programme Manager way. This partnership between Glasgow Life
and Macmillan was launched in 2012, and
Location now ensures that people affected by cancer
The Mitchell Library, Glasgow in Glasgow are no more than one mile from
cancer information and support provision. Based
In post within local libraries, our 97 volunteers provide
Since 2012 a listening ear, information and signposting to
a huge range of local and national services.
Contact Through our partnership with Cancer Support
Craig.Menzies@glasgowlife.org.uk Scotland, we also deliver counselling and
complementary therapies.
macmillan.org.uk/macvoice
Craig Menzies | Q&A | 9
At inception, we challenged ourselves to create We were absolutely thrilled to be awarded
a service that is accessible, quality assured and a Macmillan Excellence Award in 2017. We are
relevant to anyone affected by cancer, including also really proud of our 4.75 (out of 5) score for
families, friends and carers. And importantly, we the Macmillan Quality in Information and Support
wanted to ensure that our volunteers are at the Services (MQuISS) standards. These things
heart of everything we do. Fast forward to today, simply re-iterate the standard of support on
and our programme has had more than 15,500 offer from our incredibly dedicated volunteers
attendances, and almost 50% of those have been and staff.
family members, friends and carers. We believe
this statistic shows the need for an alternative to How would you like to see the
clinical-based support systems, to allow improved service develop?
access to support for anyone affected by cancer, Our work with our volunteer programme, which is
not just the patient. increasingly acknowledged as best practice, both
locally and nationally, leads us into an exciting new
What does your role involve? era. In September 2018, we entered into a new
I have been with the programme since it was funding agreement with Macmillan This will see
launched in 2012. I joined as a service delivery us develop a centralised programme of Macmillan
manager, and then took over as programme volunteering opportunities – the first of its kind
manager in January 2016. I am responsible in the UK. The idea is to use the existing skills,
for managing our partnership approach to the knowledge, experience and networks built by the
development, delivery and sustainability of the Macmillan @ Glasgow Libraries team to support
service. My day-to-day work varies significantly, partners in developing volunteer programmes of
but focuses on integrating our programme into the their own. This work is already underway, through
wider cancer environment in Glasgow. We aim to partnerships with the NHS and Glasgow City
ensure that every individual affected by cancer has Council. Our ambition is that this will lead to a
access to the wide range of services available. diverse, accessible and quality-assured range
of Macmillan volunteering opportunities across
What are the main challenges? the city.
Like any innovative programme, we have
experienced challenges in changing the way
people think about service delivery. The option Volunteers are at the
of a non-clinical, community-based and volunteer-
led service is very different to many existing heart of everything
services. It has taken time to find our place within
the cancer pathway, which has historically been we do.
based across clinical settings. However, we have
made significant progress over the past couple of How does being a Macmillan professional
years, with a growing appreciation of the role of support your work?
non-clinical services, for patients and also families, There is an incredible amount of knowledge,
friends and carers. experience and support available to us from the
geographical team in Scotland, who are always
And what about the rewards? just a phone call away. Their support, along with
It sounds like a cliché, but my whole role is really the Macmillan brand, has allowed us to keep
rewarding in many ways. Every day we hear of on challenging historical barriers. The trust and
the impact that our services are having on people, quality assurance associated with Macmillan
whether that is someone who has recently been undoubtedly encourages our partners to work
diagnosed, or someone who has lost a loved one together with us to drive innovation.
to cancer. It is always rewarding for the staff team
to hear that we have made a difference, and that
feeling is enhanced further when we hear how
fulfilling this work is for our volunteers. To date,
our volunteer contribution is over 44,000 hours
donated to the programme. That’s a huge number
of people making their own choice to support local
people affected by cancer.
macmillan.org.uk/macvoice
Feature | A catering event for people with head and neck cancer
Delicious desserts created by
the catering students. A catering event for people with
head and neck cancer
Macmillan Speech and Language Therapist Chloe Jarvis and Specialist
Oncology Dietitian Claire Davis describe an event to boost confidence around
eating and drinking.
Head and neck cancer and its Specialist Steph Murgatroyd. We are
treatments can have a significant based in the head and neck cancer
impact on a person’s ability to eat, team at University Hospitals Plymouth
drink and enjoy mealtimes. This NHS Trust.
affects not only the person with
cancer, but also their family and With the support of Macmillan and
friends. Food tends to become a the head and neck cancer team, we
medicine, rather than being part visited the catering students before the
of a pleasurable social experience. event. This gave us a chance to brief
them on the impact of head and neck
On 9 November 2018, catering cancer, and specific flavours that would
students at City College Plymouth stimulate saliva and enhance taste.
held a special event at the college’s
restaurant. This was intended to Head and neck cancer treatments
support people recovering from head often result in:
and neck cancer to explore the culinary
world. The event aimed to stimulate • dysphagia (difficulty or discomfort
appetites and increase confidence in swallowing)
around eating and drinking.
• xerostomia (dry mouth) and
Working with catering students
We came up with the idea for the • dysgeusia (taste changes).
catering event with Clinical Nurse
macmillan.org.uk/macvoiceA catering event for people with head and neck cancer | Feature | 11
All these distressing symptoms can Attendees particularly enjoyed meeting
affect appetite and socialising. This others in a similar situation and the
can have a big impact on patients, opportunity for social interaction. There
with some feeling that they will never were also several positive comments
enjoy mealtimes again. We talked about the tasting aspect of the
to the catering students about these day. One person said that the
eating problems and the need to modify canapés were ‘clever, imaginative
textures for people with dysphagia. and superbly prepared’.
The students rose to the challenge
and created a variety of delicious With ongoing support from Macmillan,
canapés, including chicken tagine with we hope to run a catering event every
pomegranate jelly and green tea sorbet. year. This will give future head and
neck cancer patients the opportunity to
Another aim of the event was to create a enjoy eating and socialising again after
supportive social environment. Patients their treatment.
who attended were encouraged to:
Further information from Macmillan
• try flavour combinations that they Macmillan’s booklet Recipes for people Further information
may not have considered affected by cancer contains simple,
appetising meal ideas and practical
• talk with others who may have been tips. It includes a range of recipes that
experiencing the same difficulties. aim to address the different eating
problems that people with cancer may
It is often recommended that patients eat face. Some of the tips include:
little and often, rather than challenging
themselves with big meals. Having small • People who have problems
canapés made this possible, without swallowing should try eating softer
people feeling as though they were foods. They can cut ingredients
wasting food. One attendee said, ‘I into small slices or chunks. Adding
Chloe Jarvis
haven’t had flavours like that in years.’ sauces or gravies may also make
food easier to swallow. It may be Macmillan Head
and Neck Specialist
Inspirational talks necessary to use a liquidiser or
Speech and Language
Various speakers presented blender for some dishes. Therapist
throughout the day, with talks from University Hospitals
the local Mustard Tree Macmillan • People who have a sore mouth may Plymouth NHS Trust
Cancer Support Centre on adjusting need to avoid dry foods and add chloe.jarvis@nhs.net
to life after treatment and coping sauces or gravies. Creamy foods
with fatigue. may be easier to eat. They should
also avoid foods that are spicy, acidic
We also heard from Ryan Riley, who or salty, such as chilli peppers, citrus
founded Life Kitchen, a charity that fruits and tomatoes.
has collaborated with River Cottage
to offer free cooking classes to people • People whose sense of taste has
living with and beyond cancer. Ryan changed may want to eat foods that
spoke about his experience and gave have stronger flavours. They can
tips for enriching flavour. His talk add seasoning to their cooking, but
was very well received, and several certain spices may make a sore
people requested a local cooking mouth worse. Claire Davis
demonstration in the near future. Specialist Oncology
To order a free copy of Macmillan’s Dietician
Overall, feedback about the catering award-winning booklet Recipes University Hospitals
event was overwhelmingly positive and for people affected by cancer, Plymouth NHS Trust
students gained invaluable experience visit be.macmillan.org.uk claire.davis22
in cooking for people with dysphagia. @nhs.net
macmillan.org.uk/macvoice12 | Feature | Cancer care closer to home
Cancer care closer to home
Macmillan Systemic Anti-Cancer Therapy Outreach Project Manager Amy
Peterson on developments in community cancer care in Buckinghamshire.
The treatment of cancer with The trust is considering delivering
medicines is commonly referred to some intravenous medicines, with
as Systemic Anti-Cancer Therapy careful attention to the risk of adverse
(SACT). Buckinghamshire Healthcare reactions and pharmacy logistics.
NHS Trust recognises the need to Both Marlow and Thame Community
ensure safe and sustainable services Hubs have bedded bays to facilitate
while meeting an increasing demand these treatments, depending on
for SACT. To address this, we are implementation plans.
working in partnership with Macmillan
to develop outreach cancer clinics in In July this year, we will open a third
community settings. outreach site at Amersham Hospital.
This new location will enable a greater
Currently, the trust’s SACT service is proportion of the trust’s cancer
delivered across the two acute care patients to receive cancer care
sites at Stoke Mandeville Hospital in closer to their home.
Aylesbury and Wycombe Hospital in
High Wycombe. The trust piloted an In early February, the Macmillan
outreach site at Marlow Community SACT Outreach Team also designed
Hub in August 2017. Macmillan then an oral oncology clinic run by nurses at
provided £350,000 to expand the Stoke Mandeville Hospital. This clinic
service throughout the county. Clinics benefits about six patients every week.
at Thame Community Hub launched Many people who live in Aylesbury and
in early March 2019. the surrounding areas can now have a
quieter patient experience, compared
to attending the busy hospital day
People can care unit.
avoid the cost Measuring the impact
Over 300 patient visits were
of parking fees, recorded in the first 18 months of
anxiety and
running the pilot scheme at Marlow
Community Hub.
longer travel Ongoing monthly Key Performance
times. Indicators measure:
• the number of patients receiving
SACT locally
The hubs are re-purposed community
hospitals used across a variety of • the types of treatments offered
services including physiotherapy
and general outpatients. At the • the number of clinics scheduled
community clinics, patients can
receive central line care, pre- • the subsequent extra capacity in the
chemotherapy assessments and day care units of Stoke Mandeville
oral and subcutaneous (under the and Wycombe Hospitals.
skin) cancer treatments. These
have all been agreed as suitable for Patient satisfaction will also be
delivery within the outreach setting. measured using standard surveys.
macmillan.org.uk/macvoiceCancer care closer to home | Feature
Once the outreach service is fully
implemented, we expect 40 patient
visits per week to be relocated to
community hubs. This amounts to
approximately 140 patient visits per
month or 1,680 per year. As a result,
we estimate that the day care units
at Stoke Mandeville and Wycombe
Hospitals will have extra capacity
of up to 12% (based on the total
number of 14,500 outpatient treatment The Thame Community Hub.
interventions in 2017).
Improving patient wellbeing Looking to the future
Healthcare experts and current A key aspect of the trust’s Quality
patients say that the outreach sites Priorities is to innovate and develop
have a positive impact on well-being. services. Delivering cancer care closer
As treatment is available closer to to home puts this strategy into practice.
home, people can avoid the cost of The Macmillan SACT Outreach Team
parking fees, anxiety and longer is currently considering:
travel times to Stoke Mandeville
or Wycombe Hospital. • offering community hub staff training
with Macmillan resources
The first patient at the Thame Hub,
who was receiving treatment for • signposting and/or offering patients
bowel cancer, said: ‘This is wonderful support services, such as dietetics Further information
because I’m just down the road and or physiotherapy.
it can cost me up to £9 for parking at
Stoke Mandeville.’ The community hubs may also host
local health and well-being events in
Shelley Orton, Macmillan Partnership future. So, watch this space for further
Manager in Buckinghamshire, explains: developments in community cancer care
‘Travelling long distances for cancer in Buckinghamshire.
treatment can be stressful, when you
should be able to focus on getting With thanks to Matron Penny Boon
better. That’s why Macmillan has (now retired), Consultant Nurse Annie Amy Peterson
invested £350,000 to fund four staff Richards, Advanced Nurse Practitioner
Macmillan Systemic
members for two years, so they can Asha Mathew, Macmillan SACT Anti-Cancer Therapy
get this project going.’ Outreach CNS/Team Leader Francesca (SACT) Outreach
Lis and Macmillan SACT Outreach Project Manager
Neil Macdonald, Chief Executive at Chemotherapy Nurse Cancer Care and
Haematology Unit
the trust, adds: ‘This partnership with Dina Nogueria.
(CCHU)
Macmillan is great news for people Buckinghamshire
with cancer in Buckinghamshire, who Healthcare NHS Trust
will be able to get the same expert
amy.peterson@
care from our nursing teams, but in nhs.net
a hospital closer to their home.’ 01494 426 230
macmillan.org.uk/macvoice14 | Feature | Helping to speed up insurance claims for people with cancer
Helping to speed up insurance
claims for people with cancer
Macmillan is working with insurance company Aviva and cancer nurse
specialists to support quicker decisions on insurance claims for people
with cancer.
A cancer diagnosis can be sudden aimed to test new methods of
and unexpected. It can affect every providing medical evidence to
area of a person’s life, including their insurers through a CNS, rather
finances. Research by Macmillan than the patient’s consultant.
shows that 83% of people experience
a financial impact from cancer, and Specialist nurses who participated
these people are, on average, £570 in the pilot indicated that their main
a month worse off1. motivation was to help patients
manage the financial impact of
This is usually caused by a cancer. Many were keenly aware
combination of reduced income, of the financial difficulties faced by
as people may have to stop working people living with cancer and therefore
during treatment, and additional costs. the difference that speeding up an
These include costs associated with insurance claim could make.
regular trips to medical appointments
or increased energy bills. One CNS said, ‘The financial part
has the biggest knock on effect on
Many people have insurance in place to patients. They still have a household
protect them from the financial impact of to run on top of everything else.’
cancer. Protection insurance policies like
critical illness cover can pay out a single The CNSs that we are working with
lump sum if a person is diagnosed with have been particularly worried that
a serious illness, such as cancer. some patients are going back to work
too early because they cannot afford
However, the time it takes for a to take more time off to recover. Many
critical illness claim to be processed have seen patients experience a great
can exacerbate the financial impact deal of stress and anxiety due to a
of a cancer diagnosis and cause delay of a couple of months in their
unnecessary worry for people. The claim being processed. Rapid access
processing time for a critical illness to insurance money could help prevent
claim varies across the sector, but these kinds of situations.
60 days is not uncommon.
Making an impact
Most of this time is taken up by The 2014 pilot was successful and is
the insurer waiting to receive the now embedded within the Aviva service.
necessary medical evidence from the As a result, processing times for cancer
patient’s consultant. By exploring other claims dealt with by Aviva have reduced
ways of providing this evidence, claim from 60 days to an average of 20 days.
times could be reduced significantly. Since the start of the partnership, 530
people have been supported to receive
Macmillan is working with the insurance an estimated £33 million.
company Aviva and cancer nurse
specialists (CNS) to address this
problem. The partnership started
with a six-month pilot in 2014, which
macmillan.org.uk/macvoiceFour in five people with Processing times for cancer So far, Aviva has supported
cancer are, on average, claims dealt with by Aviva 530 people to receive an
£570 a month worse off. have reduced from 60 days estimated £33 million.
to an average of 20 days.
References
On one occasion, the Aviva claims The success that we have had so
assessing team was contacted by a far is due to the work and support that 1. Macmillan Cancer
claimant who had just been diagnosed CNSs have given and continue to give Support. 2013. Cancer’s
with prostate cancer. His CNS got in to the partnership. We would like to Hidden Price Tag.
Available at https://
touch the following morning to provide thank them for their involvement and
www.macmillan.org.
the necessary medical evidence for the considerable impact that the
uk/_images/Cancers-
required to prove the diagnosis. partnership is having for people Hidden-Price-Tag-
Following this confirmation from living with cancer. report-England_tcm9-
the CNS, Aviva was able to confirm 270862.pdf (Accessed
payment in full for the claim. This was Macmillan provides information about March 2019)
a great outcome for the claimant and insurance for people with cancer. You
for the assessor. can order our booklet, Insurance, from
macmillan.org.uk/insurance Further information
We continue to work with Aviva to
refine the process of providing medical
evidence, including specialist nurses
verifying a person’s diagnosis over
the phone.
Edlira Alku
Macmillan Financial
Support Development
Manager
ealku@macmillan.
org.uk
macmillan.org.uk/macvoice16 | Feature | Encouraging patients and carers to think ahead
Encouraging patients and carers
to think ahead
Dr. Kath Lambert, Consultant in Palliative Medicine, on developing a programme
to promote advance care planning in Harrogate.
In 2018, the Royal College of Physicians Aims of the programme
published a report called Talking about The Macmillan Health and Wellbeing
dying1. It discusses the challenges that Programme in Harrogate is well
doctors face in starting conversations established, providing education for
with patients and families about what patients living with and beyond cancer.
lies ahead. The purpose of these In 2017, the Macmillan Palliative Care
conversations is to discuss honestly Team was approached to develop a
what people can expect to face in the special programme for people with
future, and to give them choices and a palliative cancer diagnosis.
control over the end of their lives. The main aims of the Thinking Ahead
Programme are to:
Currently, discussions about end of life
References care often happen in a crisis or out of • keep patients as well as possible,
hours. The doctor may not have time for as long as possible
1. Royal College of
to build up a relationship with their
Physicians. Talking
about dying: How
patient. Sometimes the person is too • encourage patients to live life
to begin honest unwell to contribute to the discussion. to the full in a supported, self-
conversations about managed way
what lies ahead If palliative care and advance care
(October 2018). planning are introduced early in a • offer support to family members
www.rcplondon.ac.uk/ person’s treatment, this can:
projects/outputs/ • give advice on local services and
talking-about-dying- • improve pain control, mood and how to access them
how-begin-honest- quality of life
conversations-about-
• provide opportunities to consider
what-lies-ahead
• reduce aggressive treatment at the advance care planning and meet
end of life key people, who may be able to
help in the future.
Further information • reduce emergency hospital
admissions Programme design
The programme consists of three two-
• enable a person’s wishes to be hour sessions, where two members
respected, including their preferred of the Macmillan Palliative Care Team
place to die talk about:
• even extend life expectancy. • choice of place to die
The Harrogate and District NHS • resuscitation decisions
Dr. Kath Lambert
Foundation Trust’s Thinking Ahead
Programme is designed for people • advance decisions to refuse
Consultant in Palliative
with a palliative cancer diagnosis treatment
Medicine
Harrogate and District and their carers. It encourages
Hospital them to begin considering advance • tissue donation
care planning and choices for end
kath.lambert@
hdft.nhs.uk of life care in a group environment, • symptom control in the last
supported by healthcare professionals. days of life.
macmillan.org.uk/macvoiceEncouraging patients and carers to think ahead | Feature | 17
The Sir Robert Ogden Macmillan
The remaining sessions are delivered The programme explains how these Centre in Harrogate
by a clinical psychologist, occupational symptoms can be managed. Other
therapist, dietitian, complementary benefits that have been reported
therapist and benefits adviser. after the programme include:
No extra funding is required because •p
articipants requesting copies of
staff are given time to deliver the medical letters to improve their
programme as part of their existing understanding
roles. The programme is held at the
Sir Robert Ogden Macmillan Centre. • r ecognising communication
This is a comfortable and convenient challenges between different services
location, with no additional venue costs.
•h
ospice visits to explore options
Impact of the programme for a preferred place to die
In 2018, 23 people with a palliative
cancer diagnosis and 17 carers • access to additional welfare benefits
participated in the Thinking Ahead
Programme. Only 26% had any •m
ore complementary therapy
previous contact with the Macmillan referrals.
Palliative Care Team, and 63% of
patients were having active cancer Lessons from the programme
treatment. This suggests that we are The Thinking Ahead Programme has
meeting the aim of introducing advance been overwhelmingly well received,
care planning at an earlier stage. and participants have said that it helped
them to feel more supported through this
We use the Integrated Palliative stage of their illness.
Outcome Scale (IPOS) before and
after the programme. On the first day: To manage increased demand in 2019,
we plan to deliver the programme jointly
• the physical symptoms that patients with a Macmillan Palliative Care Team
most commonly rated as ‘moderate’ professional and a cancer clinical nurse
or ‘severe’ were drowsiness, specialist. We hope this will increase
weakness and poor mobility other professionals’ confidence in
advance care planning. We may also
• 47% of patients had anxiety widen the programme to include
‘sometimes’ or ‘most of the time’ patients with other palliative diagnoses,
such as end stage respiratory disease
• 71% reported family anxiety or heart failure.
‘sometimes’, ‘most of the time’
or ‘always’. You can watch a short film about the
Thinking Ahead Programme at
www.hdft.nhs.uk/services/
palliative-care
macmillan.org.uk/macvoice18 | Feature | Establishing speech and language therapy in palliative care
Establishing speech and language
therapy in palliative care
Rebecca Mears, Macmillan Speech and Language Therapist, discusses the
importance of her role within a specialist palliative care team.
What would you do if you could not • examine the need for a speech
communicate? What if you were and language therapy service
reaching the end of your life, but could specifically for oncology and
not tell people what you needed and palliative care patients
how you felt? What if every time you
had something to eat or drink, it made • obtain data to support the
you cough and feel anxious about ongoing need for this service
trying again?
• offer this service in acute,
References These are the situations that speech rehabilitation and domiciliary settings
1. National Institute and language therapists are uniquely
for Health and Care qualified to assess and manage. A • provide a highly specialist service
Excellence (NICE). project in Wales has demonstrated to patients, with the aim of
Cancer service the importance of this role within a maximising their communication
guideline [CSG4]: specialist palliative care team. and swallowing potential
Improving supportive
and palliative care
Improving quality of life • identify training needs and implement
for adults with cancer
Communication is a hugely important training among staff, patients and
(March 2004)
https://www.nice.
part of everyone’s life. Difficulties in relatives in relation to swallowing
org.uk/guidance/ getting messages across, making needs and eating or drinking difficulties.
csg4/resources/ known or expressing emotions can have
improving-supportive- a detrimental impact on people living Key achievements
and-palliative-care- with cancer and those supporting them. Before the project, people had a long
for-adults-with-cancer- wait of up to 14 weeks for referral to
pdf-773375005 Swallowing difficulties also speech and language therapy. This
adversely affect a person’s quality often resulted in poor outcomes,
of life. They can result in recurrent including hospital admissions, reduced
Further information chest infections, frequent and avoidable quality of life and additional distress for
hospital admissions, and an untimely patients and carers.
death. Problems with swallowing are
frightening, uncomfortable and The project is unique in providing a
upsetting for patients, and can highly specialist, flagship service. A
add to carers’ distress. review by Macmillan showed that there
are no other speech and language
The goal of palliative care is to achieve therapist posts dedicated to supporting
the best quality of life for patients and patients within a specialist palliative
their families1. Speech and language care team in Wales.
therapists clearly have a role to play
Rebecca Mears
in fulfilling this key goal. Significant changes in service
Macmillan Highly provision were made over the
Specialist Speech and
Demonstrating value three years, enabling
Language Therapist
in Oncology and In October 2015, Cwm Taf improvements in patient care
Palliative Care Morgannwg University Health Board and multidisciplinary team working.
Cwm Taf University began a three-year project funded The key achievements were:
Health Board by Macmillan.
rebeccamears@ The main objectives were to:
wales.nhs.uk
macmillan.org.uk/macvoiceEstablishing speech and language therapy in palliative care | Feature | 19
• an estimated 275% increase in 2018 TOMS Score Summary
referral rates for oncology and
15
palliative care patients to speech
and language therapy across a
three-year period
• the development of clear referral 10
pathways and processes
• 84% of hospital ward patients in
palliative care units being seen on 5
either the day of referral or within
one working day
• community referrals being seen 0
within 15 working days Impairment Activity Participation Distress and
wellbeing
• improved staff confidence
following training and excellent Key: Improved Maintained Decreased
patient feedback.
The Therapy Outcome Measures
Impact on patients’ lives According to the multidisciplinary Scale (TOMS) scores for the speech
People with lung cancer were by far team, the ‘input of a dedicated speech and language therapy service.
the group most commonly referred to and language therapist, for complex
speech and language therapy, followed feeding decisions or to maximise
by those with brain tumours, head communication for the patient to be
and neck cancers and oesophageal involved in decision making, has been
tumours. However, people with a wide crucial’. The greatest achievement of
range of cancer types were referred the project was the impact on patients’
to the service, often experiencing lives. Feedback from people with
swallowing and/or communication cancer and their relatives highlighted
impairments because of secondary the distress caused by difficulties in
brain cancer. Others may have these swallowing or communicating. Everyone
symptoms towards the advanced expressed gratitude for the help that
stages of their disease due to they received from a speech and
general debility and frailty. language therapist. One patient said,
‘I could not have had better support in
Improvements to patient care were this area of my care’.
measured using the Therapy Outcome
Measures Scale (TOMS). This ‘core Speech and language therapists have
scale’ examines and scores various a vital role in the palliative care setting.
areas, including a patient’s impairment Further work must be done to raise
levels, activity limitations, participation awareness, share learning and seek
restrictions and their feeling of distress opportunities to establish the profession
or wellbeing. as a core part of a specialist palliative
care team.
macmillan.org.uk/macvoice20 | Feature | Identifying services to support health and wellbeing
Identifying services to support
health and wellbeing
Macmillan Project Facilitator Leigh Brand on supporting people with cancer to
access information and support within their local community.
As part of a recent project audit In addition to psychological support
in York, people with cancer were and support for relatives, other
asked to rank services that could services that ranked highly were
support their health and well-being. benefits advice, dietetics and
Psychological support for people with complementary therapies. We
cancer and support for their relatives know that benefits advice is already
ranked highly on the list of services. available in Scarborough and can
help to relieve stress and anxiety.
Macmillan is funding a project to
implement the Macmillan Recovery There has also been an emphasis on
Package throughout York Teaching developing patient voice, and we have
NHS Foundation Trust. The trust covers met with patients through focus groups
a large area, which includes about to consider which services would help
15,000 (in 2010) people living with them after a cancer diagnosis. We
cancer in both York and Scarborough. also want to be more accessible in the
Funding is set to continue until 2021 community and reach a wider range
and covers a new Macmillan Recovery of people who wish to contribute their
Package Project Facilitator role that views. We had a stand in a shopping
started in July 2018. The role aims to: centre in Scarborough to speak
informally with people affected by
• scope available support services cancer. We also held a pop-up Well-
being Café to talk to people about their
• identify gaps in service provision experiences of services that work well,
and which services could support
• consider which services could them further.
support patients
Our team is growing and focused
• build a robust and sustainable on ensuring that people affected by
Further information health and well-being element of cancer have the best support available
the Recovery Package. to them. This will help them to:
A mini audit was carried out in October • be more confident in making lifestyle
2018. Cancer nurse specialists used adjustments
data from the Macmillan electronic
Holistic Needs Assessment to show • participate in their care
which services could benefit patients,
both in reality and in an ideal world. • feel more in control of their situation
The results will influence how we
develop our health and well-being • reduce anxiety
Leigh Brand service. We have also identified
Macmillan Project local services and are building • improve their emotional wellbeing.
Facilitator links with them through our cancer
York Teaching information centre. To find out more, please contact us
Hospitals NHS
Foundation Trust
a macmillanrecoverypackage@
york.nhs.uk
Leigh.Brand@
york.nhs.uk
macmillan.org.uk/macvoiceIn focus: Men’s health
In this section
22 Cancer education in prisons
24 Stopping men dying from embarrassment
26 Helping men with cancer look good
and feel better
macmillan.org.uk/macvoice22 | In focus | Cancer education in prisons
Cancer education in prisons
Macmillan Senior Information Development Nurse Sue Green on delivering
a cancer education session at HMP Ford in West Sussex.
HMP Ford is a category D open I provided some facts about the
prison, where the prisoners are mainly particular cancer type, risk factors,
men with less than two years to serve, symptoms and treatment, and we also
or who have been allocated to an open discussed things that people can do to
prison by the Parole Board. It has an reduce their risk.
extensive education programme to
help prisoners gain practical and life Producing information for prisoners
skills, as well as qualifications that At the session, I also asked for some
can help them into future employment. direct feedback from prisoners on a
Macmillan information booklet that I
As part of this education programme, was working on called Dying, a guide
I was invited to give a talk about men’s for prisoners.
health in January this year. I admit
to being apprehensive beforehand, The booklet was originally produced
as I had no idea what to expect. But in 2015, following a Macmillan project
I was made to feel very welcome by to look at the palliative care needs of
prisoners and staff alike, and really people in prison. Prisoners at HMP
enjoyed the visit. Frankland reviewed and contributed
to the booklet’s development.
Literacy levels While the numbers of people dying
can vary hugely from a long-term illness in prison
is low, they and their families need
in the prison information about the help and support
available. In April 2018, the Dying Well
population. in Custody Charter was launched to
support the provision of good end of
life care to people in custody. This
I spoke to a group of about 16 men is thought to be the first publication
of all ages and cultural backgrounds. of its kind and is supported by the
The session covered men’s health Ambitions for Palliative and End of Life
generally, but with a focus on cancer. Care Partnership. Macmillan currently
I was unsure of people’s experience funds two posts for palliative care in
and knowledge, so began with a quiz prison, one in Scotland and one in
to see who thought certain statements the north of England.
were true or false. For example, ‘men
don’t have to be concerned about One of the challenges in developing
osteoporosis’ (false), ‘drinking beer health information for prisoners is
can contribute to a beer belly’ (true) being aware of their level of literacy.
and ‘more men die from prostate Generally, prisoners are understood
cancer than any other type of to have lower than average literacy
cancer’ (false). levels, but this can vary hugely in
the prison population.
I also talked about common cancers,
such as lung and bowel cancer, as well All of Macmillan’s information for
as cancer types that affect only men, people with cancer uses plain
including prostate and testicular cancer. English and avoids medical or
macmillan.org.uk/macvoiceThe library at HMP Ford.
legal jargon. We also provide some of conversations afterwards with a couple References
our information in easy read and audio of people who wanted to ask specific 1. Dying Well in
book formats, as well as offering large questions. I was escorted at all times Custody Charter
print on request. by someone familiar with how the Self-Assessment
prison works, and who held the keys! Tool. Available at
Macmillan’s booklet for prisoners Even the toilet had to be unlocked for endoflifeca
explains what might happen as a me to use. The Education Manager reambitions.org.uk/
prisoner approaches the end of their life was grateful for the visit and felt it tag/prisons/
in prison and how their symptoms can was a positive and useful session. (Accessed
be managed. It mentions the different March 2019)
people who may be involved in their Following the talk, I was shown round
care and where they may be looked the education area. It was interesting
after. There is some information about and heartening to learn about the Further information
what happens after their death and the valuable work they do. Education
support available for families and friends. can make such a difference to
people whose lives have taken
The librarian at HMP Ford kindly a wrong turn somewhere.
arranged for two of the prisoners
to review the updated version, and The current version of the booklet
generally the feedback was positive. Dying – a guide for prisoners is
Until now the booklet has only applied available at be.macmillan.org.uk
to prisoners in England and Wales, but and we hope that the updated version
the new edition will reflect the different will be published later this year.
laws and terminology across all four Sue Green
nations of the UK. Thank you to all at HMP Ford Macmillan Senior
who made me very welcome Information
The session was well received. and who contributed to revising Development Nurse
Those attending engaged with the booklet. sgreen@
the presentation and I had private macmillan.org.uk
020 7091 2221
macmillan.org.uk/macvoice24 | In focus | Stopping men dying from embarrassment
Stopping men dying from
embarrassment
Macmillan Consultant Urological Surgeon, Jyoti Shah, on her campaign to
offer men prostate cancer screenings in familiar settings.
Prostate cancer is the most examine their prostate. If there are
common cancer among men in the UK1. any abnormalities, we invite men for
According to the charity Prostate Cancer an MRI scan and possibly prostate
UK, about one in eight men will be biopsies at the hospital.
diagnosed with prostate cancer at
some point in their lives2. As a The clinic at the Pirelli Stadium is a
Macmillan Consultant Urological great way to reach men over the age
Surgeon, I have seen the emotional of 50. They have the highest risk of
turmoil that the disease can cause getting prostate cancer3, but may
for patients and their families. be nervous about visiting their GP
surgery or local hospital. In relaxed
Men often present late with prostate surroundings like their local football
cancer, when it is more difficult to club, men are often more receptive
treat and may have spread. Many to the importance of having a
are reluctant to see their GP due to health check.
fear or embarrassment. One of the
diagnostic tests involves the doctor Our unique project got people talking
feeling the prostate gland through the straight away and resulted in eight
patient’s rectum with a gloved finger men being diagnosed with prostate
to check for changes. This test may cancer. Sarah and I also set up
be embarrassing for some men and a support group and designed a
prostate cancer is considered a taboo website full of useful information for
subject in certain communities. people living with prostate cancer
(fightingprostatecancer.co.uk).
My colleague, Macmillan Urology
Advanced Nurse Practitioner Sarah Spreading awareness
Minns, and I decided that something Since then, we have taken our project
had to be done to stop men literally to diverse venues and tried to get right
dying from embarrassment. into the heart of the community. Our
clinics involve working with various
The campaign community groups in their own
In March 2016, Sarah and I developed environment, including Freemasons
a new health campaign to raise at their lodges, Rotary Clubs, other
awareness of prostate cancer and football clubs, African-Caribbean
alleviate the ‘fear factor’. community centres, Derbyshire Police
headquarters and even an Indian
Our ‘Inspire Health: Fighting Prostate temple. In this way, men are already
Cancer Campaign’ began by offering a little less intimidated when we
men screenings and advice at Burton encourage them to come forward
Albion Football Club in the West for screening.
Midlands. We created a pop-up clinic
at the Pirelli Stadium, where men We also do a lot of talks to spread
can make 10-minute appointments. awareness of prostate cancer. It has
Sarah carries out the prostate specific been particularly rewarding to go into
antigen (PSA) blood test after getting the Asian community, break down
patients’ informed consent, while I barriers and have an open discussion
take a full medical history and then about men’s health.
macmillan.org.uk/macvoiceYou can also read
