Amy Kenyon Macmillan Information Nurse Specialist In this issue: Macmillan Cancer Support
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
For Macmillan Professionals | Issue 94 | Autumn 2020 Amy Kenyon Macmillan Information Nurse Specialist In this issue: Responding to the challenges of the coronavirus pandemic
2 | Contents
Visit our website
Welcome
Mac Voice is now available to download as an
interactive PDF at macmillan.org.uk/macvoice Welcome to the Autumn 2020 edition of Mac Voice.
If you’d like to stop receiving a paper copy of Mac
Voice, email macvoice@macmillan.org.uk Healthcare professionals continue to face many challenges
as a result of the coronavirus (COVID-19) pandemic.
Writers wanted You can read about how Macmillan has responded to the
Mac Voice is for you. You can write about crisis in a message from our CEO Lynda Thomas, get an
the topics that matter to you and share your update on how fundraising has changed for the organisation
knowledge with others. You don’t have to be and find out what it takes to develop information in a
an experienced writer to get involved fast-changing environment.
– simply email macvoice@macmillan.org.uk
This issue features a Q&A with Amy Kenyon, Macmillan
Contributors Information Nurse Specialist, who talks about the highlights
Clare Bloor • Clare Byrne • Elliot Graves • Sue and challenges of her role on the Macmillan Support Line,
Green • Sheree Hall • Niki Johnson • Amy Kenyon as well as the impact of COVID-19. Find out more on
• Joanne Kinsey • Maria Leadbeater • Hannah page 10.
McKearnen • Amanda Mellon • Move More
Northern Ireland team • Julie Pieczarka
We showcase the work of several individuals and Trusts
• Claire Rowney • Gillian Thomas • Lynda
during the pandemic, including innovative ways of working
Thomas • Dawn Warrington • John Wonnacott
in Liverpool, Crewe, Northern Ireland and Barking, Havering
and Redbridge. We also hear about the role of a palliative
Editorial board care chaplain in Antrim Hospital, and the importance of
Rachel Coulter, Macmillan Marketing Manager • spiritual care.
Sarah Davies, Macmillan Information and Support
Facilitator • Rajvinder Dhillon, Biomedical Scientist Also featured are a pilot project providing cancer information
and Colposcopist • Alison East, Macmillan and support for the deaf community and an insight into
Lead Cancer Nurse • Rachel Evans, Macmillan the financial barriers for patients with no recourse to
Clinical Lead Speech and Language Therapist • public funds.
Sadaf Haque, GP and Macmillan Cancer Clinical
Lead • Jackie Hollister, Macmillan GI & Gynae
Some of the photos in this issue were taken before the
Patient Pathway Facilitator • Linda Hough,
Macmillan Cancer Support and Information
government introduced the rules on social distancing.
Service Manager • Beverly Hurst, Macmillan Due to the impact of the pandemic, there will be no Winter
Alumni Ambassador • Susan Llewelyn, Macmillan issue of Mac Voice. The next magazine will be published in
Lead Cancer Nurse Wales • Yvonne McKenna, March 2021.
Macmillan National Development Lead • Lisa
Moyles, Clinical Nurse Specialist Team Lead • In the meantime, you can keep up-to-date with the latest
Lorna Nevin, Macmillan Partnership Manager news from Macmillan at macmillan.org.uk/about-us/
• Tracey O’Nions, Macmillan GI Cancer Nurse health-professionals
Specialist • Deborah Smith, Macmillan Information
and Support Lead • Tracy Williams, Macmillan
Cancer Content Manager • Sophie Woolford,
Macmillan GI Oncology Cancer Nurse Specialist
Editorial team
Elissia Albertella-Howell
Elissia Albertella-Howell • Genevieve Osei-Kuffuor
Managing Editor
• Rachel Hunter • 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
that all of the information in the magazine is accurate
and up-to-date, neither we, nor any other party involved
in producing the magazine, will be liable for your use of
its content.
MAC5772_1020. Printed on sustainable material.
Please recycle. © Macmillan Cancer Support, registered charity
in England and Wales (261017), Scotland (SC039907)
and the Isle of Man (604). Also operating in Northern Ireland.
macmillan.org.uk/macvoice
Contents | 3
4-9 16-17
News Features
4-9 Message from Lynda Thomas (CEO), Macmillan’s 12-13 Spiritual care and cancer
response to coronavirus (COVID-19) and finding 14-15 Providing cancer information and support for the
new ways to fundraise during the pandemic deaf community
16-17 Move More Northern Ireland
18-19 Tackling barriers to financial support for
cancer patients with no recourse to public funds
20-21 Hope, Hints and How To: Helping you respond to
living and dying issues during COVID-19
22-23 Supporting cancer patients and staff during the
coronavirus pandemic
24-25 Attend Anywhere: Using video calling for
counselling and hypnotherapy sessions
26-27 Developing information in a rapidly changing
environment
10-11 22-23
Q&A Resources
10-11 Q&A with Amy Kenyon, Macmillan 28 New and updated information from Macmillan
Information Nurse Specialist
macmillan.org.uk/macvoice
4 | News
Our response to the coronavirus pandemic
Macmillan Chief Executive Lynda Thomas on how we are adapting as an
organisation to continue supporting people with cancer.
The year has been difficult and continues to be days a week and have launched a number of
so. My thoughts have been with you as you’ve new services to support people with cancer,
worked tirelessly to support your patients. which you can read about on page 7.
Some of you will have been working as well as
having additional caring responsibilities and In some ways, the pandemic has brought out
many may have had to isolate with symptoms, the best in Macmillan. We have acted quickly
while supporting family, friends and colleagues, and collaboratively to find new ways to support
or may have sadly lost loved ones. Thank you people living with cancer. However, in common
for your resilience and commitment in the face with other charities, we have seen a substantial
of this adversity. decline in our income and we have needed to
make some very difficult decisions. The first
Every day I’m heartened by stories of of these was early on when we had to stop
Macmillan helping people, but there are still many of the grants to support new and existing
thousands of people with cancer who may be Macmillan services. And recently you will have
feeling isolated, forgotten or are living in fear. seen the devastating announcement about the
The scale of possible long-term damage caused redundancies that we need to make in order
by coronavirus on the health of our nation and to to be able to continue to provide vital frontline
the lives of people living with cancer cannot be cancer services.
ignored. That is why our ‘Forgotten C’ campaign
will continue to be our influencing priority for the We don’t know for definite how coronavirus will
rest of the year; to ensure governments prioritise continue to impact people living with cancer,
the recovery of disrupted cancer services the NHS or Macmillan. What we do know is that
so people living with cancer have access we need to take action now in order to step up
to essential NHS cancer services including to the challenge that we face and ensure that
diagnosis, treatment and end of life care. Macmillan can continue to help people living
with cancer. This will include supporting
Alongside this campaign, our focus has been you where we can as I recognise you, as
to maintain our support services for people with professionals, need our support more than ever.
cancer and their loved ones. I’m proud we have I hope you have been able to make use of our
been able to keep our support line open seven coronavirus information hub which provides
macmillan.org.uk/macvoice
News | 5
information and the latest guidance on cancer
and COVID-19, as well as a wide range of In brief
emotional support resources and links to our
Employee Assistance Programme. You can find
out more at macmillan.org.uk/professionals- Free Will Service wins award
wellbeing-support Macmillan has won an award for Legacy Campaign of
the Year 2020 from the Institute of Fundraising for our
Finally, I would like to update you on inclusivity Free Will Service. The annual National Fundraising
at Macmillan. The killing of George Floyd Awards aim to recognise and promote best fundraising
has brought to the fore the huge systematic practice in the charity sector. We launched our Free
inequalities and prejudice that are faced by the Will Service in September 2019. This was supported
Black community not only in the US but also by a media and digital marketing campaign highlighting
in the UK. These events made me reflect that the importance of leaving charitable gifts in wills.
Macmillan is still not where it should be in relation There were 706 pledges last year (160% of our target),
to the inclusivity agenda. This is now firmly an resulting in £11,046,810 of future estimated income
organisational priority. There is no denying that for our work. It is easy to register for the service
we have a lot of work to do, but this starts now. at macmillan.org.uk/freewill or by calling
0300 1000 200.
We have made five commitments to make
long-lasting change: Revised guidance on lymphoedema services
Updated guidance has been published for
1. We will make tackling inequality – including commissioners to improve the quality of life for people
racial inequality – a core goal for every with lymphoedema in London. This was developed
Macmillan service. by the Transforming Cancer Services Team and the
2. We will use our voice to tackle inequalities London Lymphoedema Community of Practice.
in services and support for people living The revised guidance identifies how services are
with cancer. currently commissioned in London and where
3. We will promote diversity and inclusion in the improvements are needed. It also addresses education
health care workforce. and training needs for the wider workforce.
4. Our brand will be more representative Read Commissioning Guidance for Lymphoedema
of society. Services for Adults Living with and Beyond Cancer 2020
5. We will place diversity and inclusion at the at healthylondon.org/resource/commissioning-
heart of our organisation. guidance-lymphoedema
Thank you for the work you are doing to make Macmillan awarded information quality mark
sure we are continuing to deliver for people with Macmillan has been awarded the new UK quality mark
cancer. Recent months have been far from easy for health information. The Patient Information Forum
and this is likely to continue for some time. (PIF) launched the PIF TICK (Trusted Information
I ask that you please continue to be kind to Creator Kitemark) to replace the Information Standard.
yourself and your colleagues. To be awarded the PIF TICK, an organisation is
assessed and must meet 10 criteria. These include
using reliable, up-to-date evidence, writing in plain
English and involving patients to develop health
information. Visit pifonline.org.uk/pif-tick
Lynda Thomas
CEO Macmillan Cancer Support
macmillan.org.uk/macvoice
Update on the Macmillan
Professionals Conference
and Awards
We’ve made the difficult decision to postpone this year’s
Macmillan Professionals Conference and Awards.
Even though we will not be running face-to-face events this
year, we want to ensure you feel connected and supported
during this time.
What’s coming up?
We have developed a series of virtual best practice forums,
October centred around specific topic areas, aimed at providing you
Breast Cancer Awareness Month with opportunities to learn and share best practice.
wearitpink.org We ran three successful events in August and September
and plan to continue running these virtual forums over the
National Braille Week coming months. Keep up to date with new session dates
5-11 October at cvent.me/Dlq9br
royalblind.org
As well as our best practice forums, we plan to continue
World Mental Health Day developing our virtual events programme throughout the
10 October year. Keep your eyes peeled for emails over the next few
who.int months for updates.
World Hospice and Palliative Care Day If you have any questions for the team, please do contact
10 October us at eventsadmin@macmillan.org.uk
thewhpca.org/about
November
Pancreatic Cancer Awareness Month
pancreaticcanceraction.org
Virtual best practice
Lung Cancer Awareness Month forums provide
roycastle.org the opportunity to
learn and share best
practice about a
Mouth Cancer Action Month specific topic area.
mouthcancerfoundation.org and dentalhealth.org
International Stress Awareness Week
2-6 November
isma.org.uk
December
International Day of Persons with Disabilities
3 December
idpwd.org
macmillan.org.uk/macvoice
News | 7
How Macmillan is responding to the
coronavirus pandemic
How Macmillan is responding to the changing needs of people living with
cancer during the coronavirus (COVID-19) pandemic.
In these difficult times, it is more During the pandemic, people living
important than ever that Macmillan with cancer may be shielding or waiting
communicates effectively with people for treatment that has been delayed.
living with cancer. Our strategy focuses Based on evidence suggesting simple
on making sure that our services reach things that people can do to help
people living with cancer at the times improve the outcome of their cancer
when they need us most. treatment, Macmillan has launched the
SafeFit pilot. It is a free, remote service
We have developed and are across the UK to help with people’s
constantly updating the content on physical and mental wellbeing during
our coronavirus information hub, in this period of uncertainty. The support
line with the government’s coronavirus offered is virtual to maintain social
(COVID-19) guidelines. This includes distancing guidelines and, depending
information for people living with on individual needs, can include
cancer, carers, those who are shielding exercise programmes, nutrition advice
or self-isolating and healthcare and emotional support.
professionals. See macmillan.org.uk/ Visit macmillan.org.uk/safefit
coronavirus
Macmillan has also launched the
We have also launched a new coronavirus response fund, which aims
influencing campaign to make to support the delivery of essential Boots is offering
sure that cancer is not the ‘Forgotten cancer care in the UK. A £5 million people living with
cancer free telephone
C’ during the coronavirus crisis. investment has been announced
or video consultations
Our campaign calls on UK to support the NHS and make sure with Boots Macmillan
governments to publish national that important services reach people Beauty Advisers.
recovery plans, reduce the treatment living with cancer. The Macmillan UK
backlog and ensure people living Partnerships team are allocating the
with cancer can continue to access money from a central fund.
treatment safely. Lynda Thomas (CEO)
appeared on BBC Breakfast and One of our corporate partners,
Good Morning Britain to highlight the Boots, is now offering free virtual
emergency campaign. Boots Macmillan Beauty Adviser
appointments for people living with
Many people living with cancer have cancer. These appointments are
been feeling isolated over the past available as both telephone and video
few months. We have developed consultations. They can give make-up
our Telephone Buddy service, which and skincare advice to help manage
matches an individual with cancer to any visible effects of cancer treatment.
a trained volunteer buddy. This buddy
then provides a weekly phone call for Coronavirus is having a huge impact
12 weeks or more, offering emotional on people living with cancer, and
support and signposting to other we are doing everything possible to
services. See more at macmillan.org. develop and meet the growing demand
uk/telephonebuddies on our services.
macmillan.org.uk/macvoice
8 | News
Finding new ways to fundraise
Responding to the economic impact of the coronavirus (COVID-19)
pandemic requires a more flexible approach to fundraising.
The coronavirus pandemic has made We have also been working to adapt
a huge impact on the UK economy. our regular fundraising activities during
With the charity sector predicting a 2020 to make sure our advertising
potential drop in voluntary income feels relevant to the current situation,
of up to 50% in 2020, and the focusing on our support for people
cancellation or postponement of many feeling isolated and on our cancer and
major fundraising events such as the coronavirus information.
London Marathon, we have recognised
the need to adapt our fundraising Innovation is key to ensuring that we
strategy urgently. remain flexible and align ourselves
as much as possible with the current
Ongoing monitoring of consumer experiences of our supporters.
Innovation is trends has shown that public feeling
towards charities remains positive.
We have therefore tested several
new fundraising products that people
key to ensuring We are very grateful to our fantastic
supporters who have continued to
can get involved with from home,
using market insight to see what our
that we remain fundraise for Macmillan during this
difficult time.
key audiences are interested in and
inspired by. These include the 10-day
flexible and 5k virtual running events, which have
At the end of April we launched an now raised £200,000 and Games
align ourselves emergency appeal, both to raise funds Night In, which has reached £500,000
as much as and tell the story of what it is like to be
affected by cancer in the middle of the
in fundraising.
possible with coronavirus crisis. The appeal gained
significant media coverage, supported
As we get closer to the end of the
year, we have started to evaluate our
the current by celebrities such as Fearne Cotton
and Martin Clunes. Highlighting
new products and ways of working.
This will help us think about long-term
experiences of Macmillan’s role in supporting people
with cancer at this time led to a spike
sustainability and how we can emerge
from this crisis in a strong position
our supporters. in visits to our website, and contributed to continue supporting people with
to us being seen by the public as one cancer. Find out more at macmillan.
Claire Rowney of the top 10 charities associated with org.uk/get-involved
Executive Director of Fundraising, responding to the crisis. The appeal
Marketing and Communications has raised more than £1.5 million Claire Rowney
so far. Executive Director of Fundraising,
Marketing and Communications
Earlier in the year we also launched Macmillan Cancer Support
our checking in campaign, calling
more than 20,000 supporters to
thank them for their ongoing support
for Macmillan and let them know
about the impact their donation had.
This was also an opportunity for us
to check in with people affected by
cancer, ask how they are doing and
signpost to further support.
macmillan.org.uk/macvoice
News | 9
Macmillan Horizon Centre offers new support
services during the coronavirus pandemic
The coronavirus (COVID-19) pandemic challenges information and support
centres to find ways of supporting people living with cancer remotely.
During the ongoing coronavirus crisis, The centre is also offering online
the Macmillan Horizon Centre is classes on managing anxiety, pilates,
offering a telephone and virtual support yoga nidra, and acupressure, as well
service, helping people living with as breathing and cookery workshops.
cancer across Brighton and Sussex. These are all done over Microsoft
Teams video conferencing.
Although the Horizon Centre is
temporarily closed for its usual face- One service user thanked the centre
to-face appointments or for drop-in for organising and running these
visits, staff have found safe ways sessions: ‘I find them very helpful
to continue to support local people and supportive and am so grateful to
affected by cancer. Through a new you for providing such a valuable and
service called Horizon Connect, the personal resource at a time when I
team are offering emotional, practical know you are all stretched.’
and financial support over the phone,
by email and online. Working with FareShare and Mhairi
Donald, Senior Macmillan Dietitian at
Horizon Connect offers the following: the Royal Sussex County Hospital,
the Horizon Centre Café is also
• 45-minute, online group support distributing food packs for patients
sessions that give people an who struggle to get to the shops.
opportunity to connect with Horizon There is also help for people who are
Centre staff, as well as other discharged without food waiting for
people with similar experiences and them at home.
concerns. The sessions offer people
contact and support in a way that Geoff Brown, Centre Manager,
works best for them, whether that said: ‘Despite the incredibly difficult
is a regular phone call, an online and uncertain situation every one of us
support group or help when they has found ourselves in, we knew how
need it. important it was to keep going and to
• Phone support from Information be there for the people who depend on
and Support Volunteers from 9am our support, now more than ever.
to 4pm. People can get regular
support over the phone, or just Though our doors are temporarily
call for a chat. closed and many of us are working
• Email support whenever people alone for everyone’s safety, we are
need it. There is no fixed time, so very much still here for people
this may be easier for some people. affected by cancer in Brighton
and surrounding areas.’
This support is really making a
difference, with one attendee saying: The services are open to anyone living
‘I was in such an awful space at the in Brighton and the surrounding areas
time I joined online, and during the in Sussex. Find more information at
session I felt held by you, it was as macmillan.org.uk/horizoncentre
if you were holding my hand and
mopping my brow. It really helped
me through it’.
macmillan.org.uk/macvoice
10 | Q&A | Amy Kenyon
Q&A: Amy Kenyon When did you join the support line, and why?
I’ve been on the support line for nearly two
Job title years. I’ve worked in cancer care since I qualified
Macmillan Information Nurse Specialist in 2009, and my last role was a clinical nurse
specialist for upper gastro-intestinal, pancreas
Location and liver cancers at Leeds Cancer Centre,
Macmillan Cancer Support, Shipley, managing those services as a band 7 nurse.
West Yorkshire
I’ve always wanted to work for Macmillan, and I
In post was already doing quite a lot of telephone clinics
Since 2018 to prevent people having to travel unnecessarily.
Having spent several years in one specialism,
Contact I was also interested to step out and learn more
AKenyon@macmillan.org.uk about other cancers and what was happening in
cancer care more broadly.
What does working on the support line
involve, day to day?
We provide support and guidance to anyone
macmillan.org.uk/macvoiceAmy Kenyon | Q&A | 11
across the UK affected by cancer, including their healthcare teams over the phone, so it’s
patients, relatives, carers, friends and people really tough. We also speak to bereaved people
who are worried about cancer. As experienced who are not able to grieve in the way they would
cancer nurses, we offer this support over the like, for example with a funeral or seeing family
phone and through digital channels such as and friends.
email and our Online Community, with web
chat also coming soon. Having the support line is a huge asset at this
time. That’s why we wanted to get back to a
We cover all cancer types and a vast range of seven-days-a-week service, with everyone
topics from diagnosis, to tests and treatment working from home, as soon as we could.
and end of life support. People who built up a We had the usual teething issues with IT at first,
relationship with us while their loved one was but we got up and running very quickly.
having cancer treatment also often contact us However, we’re used to being able to check in
again after that person has died to talk through with each other straight after a call, or reflect
what happened. So, we support people from the on calls on the way home, but now it’s much
beginning of the pathway right to the end. harder to let go of work at the end of the day.
We also get involved with teaching and mentoring We’ve needed to find new ways of looking after
new team members, as well as a range of other ourselves and supporting each other virtually.
projects. And I’m a wellbeing champion, which is
keeping me very busy in the current climate.
No day is ever the same.
All the nurses on the
What do you enjoy about the role?
All the nurses on the support line come from
support line come
different clinical backgrounds, which I think is
what makes this service so unique.
from different clinical
There is so much knowledge within one team backgrounds, which
and I’ve learned a lot. It’s also a privilege to be
able to support people wherever they are in the I think is what makes
country, even if they don’t have a Macmillan
centre nearby – we don’t have the postcode this service so unique.
lottery issue here. The fact that we are now a
seven-days-a-week service is great. I also love
working with all the different teams across the Has the coronavirus pandemic changed how
organisation, who have completely different the support line might work in the future?
areas of expertise. I think it’s made us all realise that we can
adapt and transition quickly when we need to.
And what are the challenges? It also works well for some people to be more
Some days the calls are very emotionally flexible with where they work, so we may look at
challenging, and I’m not sure I was totally introducing more home working, as long as
prepared for that in the beginning. I think there is a balance with face-to-face support for
perhaps people see us as more anonymous staff. During this time, we’ve networked virtually
on the phone and feel comfortable telling us and explored new ways of supporting each
things that we maybe wouldn’t have heard in other which has been really interesting.
clinics. Increasingly, we are getting a lot of calls I’ve even been hosting Skype meditation
from people with mental health issues, both sessions for colleagues, which have worked
people living with cancer and those who are really well. So there are things that we will learn
worried about cancer, and that’s challenging from and hopefully take forward.
because we’re not mental health nurses.
We are also currently recruiting more home-
How has the coronavirus pandemic impacted based nurses for the support line. This opens
your role? up these roles to any nurse, anywhere in the
It’s very difficult for people out there with cancer country. This is an exciting opportunity that will
at the moment, and the number of calls has change the way we work in the future.
massively increased. People are not getting
treatment or are having it postponed, they can’t
see family and friends, and often only speak to
macmillan.org.uk/macvoice12 | Feature | Spiritual care and cancer
Spiritual care and cancer
John Wonnacott, Specialist Palliative Care Chaplain for the Macmillan
Unit, Antrim Area Hospital, reflects on the role of a palliative care
chaplain, the importance of spiritual care and the impact of the
coronavirus (COVID-19) pandemic.
At the heart of spiritual care are concerns about hope, unresolved
compassion and respect; ‘a way of forgiveness or struggles with
seeing and listening to each one in relationships, these can interfere
the whole context of their culture and with the quality of life, the
References relationships, thereby giving each his effectiveness of treatment and peace
or her intrinsic value’1. This includes at the end of life. I work as part of
1. Murphy, K & Whorton, entering their world by letting them the multidisciplinary team, providing
B Chaplaincy and set the agenda. As Nouwen says; ‘the expert spiritual knowledge in these
Palliative Care [person] who can be silent with us in complex plans of care.
2017:104 quoting our hour of grief, who can tolerate not
Rolston
knowing, not curing, not healing and With trust and openness in place,
2. Nouwen, H Out face the reality of our powerlessness a safe space is created where
of Solitude: Three is the [person] that cares’2. sensitive conversations can be
Mediations on the
encouraged and fostered between
Christian Life 1975
I have had the privilege of working as the patient, family and myself.
3. Morton, R & McAfee, a chaplain in the Macmillan Specialist Sometimes this involves direct talking,
C Health Care
Palliative Care (SPC) Unit based in other times it involves more figurative
Chaplaincy Research:
Antrim Hospital for the past three language. For instance, I asked one
A Practical Guide for
Chaplains includes
years. I am grateful to the Methodist patient whether the ‘elephant’ in the
a foreword by Steve Church in Ireland, who gave me room had been named; that is, had he
Nolan 2020 permission to move from local church shared his last wishes with his loved
ministry to Macmillan chaplaincy. ones? He replied, ‘We know that it
has a trunk, a tail and four legs but
After leaving parish ministry, I entered we haven’t yet called it an elephant’.
Further information a world of competent professionals When I returned a few days later, his
and capable volunteers, caring for very first comment was, ‘I discussed with
ill people and supporting their loved my wife about the flowers I want’.
ones. Being part of the compassionate After that, the conversation flowed.
and resilient multidisciplinary team He died not long afterwards.
has been a challenging but also an
inspiring experience. There was a new
language to learn and an unfamiliar
environment to navigate.
With trust and
openness in
I soon discovered the uniqueness
John Wonnacott of a palliative care chaplain: to be place, a safe
Specialist Palliative
unconditionally available for everyone,
be they someone who is ill, their space is created.
Care Chaplain loved ones or a member of the team,
irrespective of age, gender, lifestyle, Another person commented that
Macmillan Specialist creed or beliefs. For I believe that the team ‘listened until I could hear
Palliative Care Unit, everyone is a spiritual being with myself’. I believe it is more important
Antrim Area Hospital spiritual needs to be met and a to know the right questions than
spiritual pulse to be attended to. the right answers. To be that non-
John.Wonnacott@ judgmental, confidential, vulnerable,
northerntrust.hscni.net When there are unresolved issues compassionate and empowering
around the meaning of life, such as presence is an honour.
macmillan.org.uk/macvoiceSupport with the same values is Guide to Research underlined that
offered to the multidisciplinary team ‘evidence-based care is globally Macmillan Unit team,
through individual conversations, established as the culture of modern Antrim Area Hospital
L-R Alison Foster,
group support, pauses for reflection, health care’3. Medical Secretary;
debriefs and educational input. Elaine Moore, HCA;
This is particularly important where COVID-19 has brought into sharper Nicola Doherty, HCA;
an accumulation of grief and loss can focus the spiritual needs for all, Amanda Mellon, Social
have a significant impact on everyone be they ill or involved in caring for Worker; Lynette Kelly,
Team Secretary;
who delivers palliative care. The team others. For ourselves, the temporary Mary-Ann McCann,
offers person-centered, holistic care, relocation of the unit to the community, Specialist Palliative
enabling the purpose-built facility (with together with the sense of fear and Care Consultant; Jayne
12 bedded individual rooms) to be an uncertainty regarding the disease, McAuley, Specialist
oasis for all. It opened nine years ago have highlighted our vulnerability. Palliative Care
Consultant, Petrina
and was the culmination of partnership I have found myself encouraging Davey, Speciality
between Macmillan and the Northern others to express these feelings and Doctor; Celine Neal,
Health and Social Care Trust (NHSCT). to find physical, emotional, social and HCA; Kerrie Davidson,
spiritual support. I provide an important Student Nurse; and
Beyond the ongoing pastoral care in link when either loved ones or a Marie McCausland,
Staff Nurse.
the unit, I lead in several areas. spiritual leader cannot be
I organise the annual carol service present. Teaching is now delivered
and blessing of hands, as well as by webinars, making chaplaincy
organising and sharing in Thanksgiving accessible to a much wider audience
and wedding services. I provide of healthcare professionals.
spiritual support to patients known to
the Macmillan Clinical Nurse Specialist Undoubtedly the learning from this
in Antrim Hospital. I am a resource for pandemic will inform our practice in
the NHSCT, teaching spirituality and what feels like a new beginning as,
spiritual care, as well as signposting in partnership with the team,
staff to resources within the Trust and I accompany others as they attend
beyond. In addition, research is an to their spiritual needs in the midst of
increasingly important aspect of my fears, concerns, hopes and dreams.
work. The Northern Ireland Chaplaincy
Research Network’s recently published
macmillan.org.uk/macvoice14 | Feature | Providing cancer information and support for the deaf community
Providing cancer information and
support for the deaf community
Maria Leadbeater and Dawn Warrington, Macmillan Information and Support
Centre Leads; Sheree Hall, Lead Cancer Nurse; and Niki Johnson, Deaf
Macmillan Co-ordinator, on a pilot project to provide accessible information and
support to the deaf community.
Further information
Information barriers presentations and interpretation,
Deafness is the third most common we decided to run two full-day
disability in the world, but it is largely sessions (over two weeks).
invisible and often misunderstood by
healthcare professionals. From the The topics covered at the sessions
experiences of deaf people who have included diet and cancer, getting
used the Macmillan Information and active, managing stress and fears,
Support Centre at Chesterfield Royal welfare and benefits. We showed the
Hospital, we became aware of major group a picture of possible physical
obstacles to accessing information and emotional effects of cancer to
and support. start a discussion, and they asked
Maria Leadbeater about several additional issues:
A deaf person’s main way of
Macmillan Information communicating is not always through • how to look after dry or oily skin
and Support Centre written information. According to a • general short-term and long-term
Lead recent evaluation of the Macmillan side effects of cancer treatments
Deaf Cancer Support Service, people • the difference between
Macmillan Information who are culturally deaf and whose chemotherapy and radiotherapy
and Support Centre, preferred language is British Sign • dangers of air travel, such as flying
Chesterfield Royal Language (BSL) face significant with a swollen arm (lymphoedema)
Hospital barriers to accessing NHS services • cannabis oil and other alternative
and managing their health conditions. treatments
m.leadbeater@nhs.net This can lead to poor health outcomes. • effects of the menopause and other
Many deaf people lack the necessary physical symptoms of treatment.
information to help their recovery,
despite seeing many healthcare All staff involved were given training
professionals1. on the specific needs of deaf people
and how to communicate with them.
Macmillan recently funded a fixed-term
support service for deaf people living We carefully considered how to
with cancer whose first languange advertise and allocate places on the
is BSL. A pilot group was created course as advertising with leaflets
to give deaf people information on and arranging telephone bookings
cancer survivorship issues, with BSL would not have worked. We therefore
Dawn Warrington interpreters available. promoted the sessions through
contacts in the deaf community
Macmillan Information Planning phase across the Midlands and using the
and Support Centre Lead We adapted our existing ‘Moving on centre’s social media.
after cancer treatment’ course and
Macmillan Information Breast Cancer Now’s ‘Moving forward Interpreter availability was vital and
and Support Centre, after breast cancer treatment’ course three BSL interpreters were present
Chesterfield Royal for deaf people and their families. at both sessions. We sent them
Hospital The aim was to give them an presentations in advance to ensure
opportunity to get information and that they were familiar with the medical
dawnwarrington@nhs.net ask questions. To allow time for the terminology. We also had to plan car
macmillan.org.uk/macvoiceProviding cancer information and support for the deaf community | Feature | 15
parking in advance, as exiting the The evaluation shows that attending References
hospital car park involves buzzing the course had a huge impact, which 1. B.A. Berman et
to speak to security staff. would benefit someone’s recovery al., ‘D/deaf Breast
and return to a healthy lifestyle. Cancer Survivors:
When preparing information packs, It highlights deaf people’s relief Their Experiences
we checked that the DVDs had at having information delivered and Knowledge’.
subtitles and removed any Macmillan appropriately for them, and therefore Journal of Health
materials promoting a telephone emphasises the need for these Care for the Poor and
Underserved, vol. 28,
helpline number. We planned to gather sessions across the deaf community.
no. 3, 2017, pp.
feedback by an interpreter asking
1165-1190.
questions after each session and video Recommendations
recording people’s responses We believe the starting point should
(with consent) to be transcribed later. be that deaf awareness is part of Further information
mandatory training for health and
Course attendance social care professionals. This training
20 people initially booked onto the is very specialist, and Deaf Cancer
course, with 14 attending the first day support, run by Self Help UK,
and 16 attending the second day. are the only group in the UK who
currently offer a tailor-made package
The time that had passed since the providing specific information for
attendees’ diagnosis was quite varied. medical and healthcare professionals.
Several people commented that they See selfhelp.org.uk/Deaf_Cancer_
previously had no accessible health Support
information and, as a result, their Sheree Hall
understanding was poor. They were Cancer information and support
keen to learn about cancer and make should be tailored to avoid giving Lead Cancer Nurse
sense of their own, or their partner’s, large amounts of written information,
cancer experience many years if this is not a person’s main way of Macmillan Information
after treatment. communicating. Deaf people often and Support Centre,
struggle with basic English, and their Chesterfield Royal
Evaluation learning style is very visual. We should Hospital
There was a high level of satisfaction consider using easy read information
with the events. Everyone stated that booklets and videos for this audience. shereehall@nhs.net
they would recommend the course to
others who have finished treatment. Hospital staff should be familiar
with how to book BSL interpreters
One attendee commented, ‘There in their area. Short Message
are always lots of leaflets giving Service (SMS) systems to aid
information, but the jargon often communication should also be
makes it inaccessible for deaf people. available in hospital department
Being able to access all this and wards, where possible.
information in my own language
(BSL) has given me a much better At Chesterfield, we plan to work with
insight and is much easier for me the region’s Deaf Cancer Support
to understand.’ group to offer cancer survivorship Niki Johnson
sessions at their future meetings.
Others said that the events were For centres and hospitals delivering Deaf Macmillan
great as ‘some deaf people are very survivorship or health and wellbeing Co-ordinator
scared of coming into a centre where sessions, we would strongly
everybody is hearing’ and that they recommend offering similar sessions Self Help UK,
would recommend them to all deaf for the deaf community. Nottinghamshire
people who have cancer: ‘It is vital and Derbyshire
– the deaf community are behind in
terms of knowledge and education.’ niki.johnson@
selfhelp.org.uk
macmillan.org.uk/macvoice16 | Feature | Move More Northern Ireland
Move More Northern Ireland
The Move More Northern Ireland team explains the project and how it has
been affected by the coronavirus (COVID-19) pandemic.
Scope of the project organise and facilitate the intervention
Move More Northern Ireland is a to suit the needs of the individual.
physical activity programme made up Each Move More coordinator develops
of 11 individual Move More projects, a close and trusted bond with their
covering all of Northern Ireland (NI). participants, offering a vital source of
Each project is a partnership and emotional support for individuals as
contract between Macmillan and the well as collectively through classes.
relevant council and leisure provider,
with a full-time, dedicated Move More The projects also provide vital peer
coordinator. The first projects began in support between the participants.
2017, and the last one was established Before COVID-19, this was both at
in August 2019, when Move More NI cancer specific classes (there were
became a regional service. more than 60 classes delivered across
Overall statistics show that the NI each week) and through WhatsApp
programme has received 5,000 groups and regional events.
referrals to date and engaged with
4,500 participants – this equates to Macmillan Partnership Managers
over 70,000 participant engagements. identified a number of Trusts across
The YouTube Building strong relationships
the UK using WhatsApp during the
pandemic. But there may be specific
channel has Move More NI coordinators have
established strong relationships
rules in some Trusts about using
this technology.
been a great across Health and Social Care Trusts,
playing an active role within health Responding to COVID-19
way to sustain and wellbeing events and receiving
direct referrals from healthcare
During the coronavirus pandemic,
Move More coordinators have been
activity and professionals. They are strong working from home to sustain the
advocates of all Macmillan services, vital service for new and existing
link up with our with excellent local knowledge. participants. While face-to-face
participants Moreover, they have relationships
with Macmillan professionals, cancer
classes and appointments are not
possible, the coordinators have been
during lockdown. services, Macmillan information and
support managers, welfare benefits
working on fun and engaging ways to
keep participants motivated and active
advisers, volunteer services as well as at home. The Move More NI
Kelly Irwin local navigators and community and YouTube channel was launched on
Move More Coordinator voluntary organisations. This provides 26 March and includes a range
kelly.irwin@lisburncastlereagh. the opportunity for constant cross- of exercise videos.
gov.uk referral to each other’s services, which
ensures a personalised response to Move More Coordinator Kelly Irwin,
the needs of people living with cancer said: ‘Like all Move More coordinators,
in Northern Ireland. I’m usually based in our local leisure
facilities or out and about meeting
Referral onto the programme can be participants. The YouTube channel
through a health professional, has been a great way to sustain
self-referral or a family member or activity and link up with our
friend. The coordinator is the central participants during lockdown.’
point of contact for referrals and will
macmillan.org.uk/macvoiceMove More Northern Ireland | Feature | 17
A virtual challenge Engaging with technology
With regional events cancelled, Queens University Belfast
coordinators Claire and Catherine approached Move More NI about an
developed the ‘round the world’ virtual evaluation of the impact of COVID-19
challenge. They identified how many restrictions on the physical activity
steps it would take to climb certain of people living with cancer, focusing
landmarks, and encouraged people to on how people are engaging with
climb as many as they could virtually. technology. This was timely as our
This involved people building up their services are being delivered through
steps every day using a front doorstep, technology, namely the Move More NI
bottom stair or kerb, and keeping track YouTube channel, Zoom, WhatsApp,
of their daily tally. The coordinators text and by phone. The evaluation was
developed a pack to support those conducted during June, with over 377
getting involved and, encouraged them responses. The analysis and reports
to take part at an appropriate level for will help inform Move More NI delivery
their fitness. Participants shared videos moving forward, when many people
and updates with us on their progress living with cancer are continuing to
and actively encouraged their peers to shield.
take part. One participant, Helen, says
that the challenge is literally keeping Looking to the future
her on her toes! The coordinators know that Move
More NI may need to provide two
‘I certainly miss catching up in person, parallel services in the months ahead.
as much for the social benefits as Some people living with cancer
the important exercise, but Kelly and may be able to return to a different
her colleagues are keeping us busy. kind of group class delivery service,
This challenge is a lot of fun – it’s incorporating social distancing.
great to have a target to concentrate But others may need to continue
on and there will no doubt be a bit shielding and we will need to keep
of good-hearted competition across making use of technology to provide
the groups! Many of us stay in touch a service for those people.
through WhatsApp groups, so we’re
only ever a message away from some
encouragement and inspiration.’
Move More Northern
Ireland team
Back row L-R:
Claire Murphy, Eimear
Hagan, Catherine Bell
Allen, Laura McGrath,
Nuala McVeigh,
Kelly Irwin.
Front Row L-R:
Alan McCausland,
Aaron Irwin, Aiden
McCarron, Conor Fox,
Sean Hargan.18 | Feature | Tackling barriers to financial support for cancer patients with no recourse to public funds
Tackling barriers to financial support
for cancer patients with no recourse
to public funds
References
Hannah McKearnen, Macmillan Information and Support Service Coordinator,
1. University of Bristol on the lack of financial support for people living with cancer who have no
& TNS MBRM. recourse to public funds.
2013. www.bristol.
ac.uk/media-library/ Financial burden her LLR status, she could not access
sites/geography/ Research funded by Macmillan shows any financial support for herself and
pfrc/pfrc1210-
that families dealing with cancer face her child. This led to her sacrificing her
financial-impacts-
a ‘huge financial burden’ in addition cancer treatment and leaving
of-cancer-report.pdf
to their diagnosis1. As well as causing the country to live with a friend in
2. Chartered Institute
a loss of income because the patient Italy, hoping the friend could look after
of Housing. 2020.
and their carer are less able to work, them both. Lucy suffered significant
www.housing-rights.
info/02_9_Work_
cancer also comes with increased psychological trauma as a result of
permit_holders. expenses such as utility bills from the experience.
php#limited-leave spending more time at home, transport
3. Home Office.
costs from travelling to appointments We approached local councils and the
Immigration special and additional childcare. Benefits Home Office to find out the number of
rules. 2016. www. such as Employment and Support people living in the country with NRPF
gov.uk/guidance/ Allowance and Universal Credit can and were told that there is no record of
immigration-rules/ help, but for those with no recourse current numbers. We know that Lucy
immigration-rules- to public funds (NRPF) there is little is not an isolated case. At Pennine
appendix-fm-family- support available. alone (which covers areas around
members Manchester including Heywood,
Immigration status Middleton, Rochdale, Oldham, Bury
Unlike refugees, people with NRPF and North Manchester), we have
usually arrive in the UK from non-EU supported four families in the past
countries on work or marital visas. nine months who were facing financial
They can legally live, work and pay hardship after a cancer diagnosis as
Further information
national insurance, and their status is a result of having NRPF.
categorised as ‘limited leave to remain’
(LLR)2. They might have travelled to Challenging the rules
the country alone, or with their family. Recently our centre manager,
They may have family who are already Charlotte Brosnan, set out to
British citizens. While this group can challenge these rules for a family in
access NHS treatment free of charge, desperate need of support. Nina (not
they have no access to public funds to her real name) is in her 40s and lives
support themselves financially if they in the UK with her husband and four-
become unwell. year-old son, who is disabled. Nina’s
husband is a UK citizen and her son
Hannah McKearnen Case study was born in the UK. She is originally
One case study is Lucy (not her real from Pakistan, but was living here
Macmillan Information name). She is a cancer patient in her on a marital visa and her status was
& Support Service 40s, who lived in North Manchester LLR. When Nina was diagnosed with
Coordinator with her teenage son. She came to the metastatic bowel cancer, the family
UK from Nigeria. Lucy held an LLR found themselves facing significant
The Pennine Acute visa and had three jobs to pay her bills financial hardship. Her husband was
Hospitals NHS Trust and support her son. Less than 12 working and struggling to care for both
months later, she was diagnosed with her and their disabled son. Nina, who
Hannah.McKearnen@ breast cancer. She was unable to work was in and out of hospice care, was
pat.nhs.uk while having treatment and because of unable to claim any benefits.
macmillan.org.uk/macvoiceThere is a clear family could access vital support
to ease the financial burden for the
Charlotte Brosnan,
gap in support for
Macmillan
remainder of Nina’s life. Charlotte was Information and
recognised for her efforts with a ‘You Support Service
this vulnerable are amazing’ award from Macmillan. Manager, being
presented with
group of people. Lack of support
her ‘You are
Amazing’ award
There is a clear gap in support for this by Ian Ainscough,
Charlotte sought advice from local vulnerable group of people. We have Macmillan
organisations and solicitors, but they seen that families living in the UK with Partnership
Quality Lead.
had no information or resources LLR status often face unimaginable
available for the situation that Nina trauma and financial hardship after
was facing. They all advised that receiving a cancer diagnosis. We find
nothing could be done, so Charlotte that there are few resources to support
prepared a case for the Home Office these patients.
by herself to have Nina’s immigration
status changed. This included filling Moreover, the procedure to change
in Home Office application forms and someone’s immigration status and
gathering information from the family evoke special rules is demanding
dating back seven years. and complicated for families who are
already experiencing significant stress
The procedure was complex, in their lives. Nina’s case was viewed
but Nina’s case was eventually by the Home Office as compassion in
successful. The Home Office granted exceptional circumstances. We know
Nina access to public funding under there are many other cases that do not
special rules. These special rules can reach the same outcome.
be evoked if a person’s human rights
are deemed to be compromised.
The restrictions on accessing public
funds were lifted, meaning that the
macmillan.org.uk/macvoice20 | Feature | Hope, Hints and How To: Helping you respond to living and dying issues during COVID-19
Hope, Hints and How To: Helping you
respond to living and dying issues
during COVID-19
Amanda Mellon, Macmillan Specialist Social Worker and Gillian Thomas,
Macmillan Specialist Palliative Care Social Worker, on developing and using an
online resource to help people through the coronavirus (COVID-19) pandemic.
A source of support Working in partnership
As Macmillan specialist social workers The Northern Ireland Social Care
Further information in Northern Ireland, we provide Council (NISCC), which is the social
valuable psychosocial and practical care workforce regulatory body,
support to adults with complex was proactive in working in partnership
palliative care needs and the people with a range of providers to develop
close to them. Based in the Northern this library of accessible information.
and Western Health and Social Care It brought together the voices of
Trusts respectively, we work as part very experienced social work and
of multidisciplinary specialist teams chaplaincy colleagues from various
in community settings. Our role has organisations across Northern Ireland,
been particularly relevant during the including Macmillan, Health and Social
COVID-19 pandemic, supporting Care Trusts, hospices and Queens
Amanda Mellon members of the public and colleagues. University Belfast. This reflects
their leadership and commitment to
Macmillan Specialist Developing a new online resource supporting communities through the
Social Worker At the start of April 2020, we were most challenging of times.
involved in the production of an online
Northern Health and resource, available to everyone, Available in the public domain,
Social Care Trust called ‘Hope, Hints and How To: the NISCC resource upholds important
Helping you respond to living and social work values and principles
Amanda.Mellon@ dying issues during COVID-19’. The such as empowering people and
northerntrust.hscni.net short videos gently offer some ideas promoting wellbeing.
and information on topics including:
A time of crisis
• Holding on to hope in As social workers, we are attuned to
challenging times noticing and responding to the impact
• Advance Care Planning of COVID-19 on our communities.
• Facilitating difficult conversations At a time when people are
• Supporting children to cope experiencing a change in their social
with bereavement supports, increased levels of anxiety
• Grieving and support and uncertainty about the future,
• Self-care for frontline workers access to sound, practical information
and managers and advice is vital.
Gillian Thomas • Spirituality.
Developing such a resource has
Macmillan Specialist The resource is relevant for anyone, been equally humbling and thought-
Palliative Care Social including professionals, community provoking. Being social work
Worker groups and those in the voluntary professionals does not make us
sector or churches, who are trying to immune from experiencing the impact
Western Health and support others during the pandemic. of COVID-19 in our own personal lives.
Social Care Trust However, by reflecting on our unique
Gillian.Thomas@
westerntrust.hscni.net
macmillan.org.uk/macvoiceHope, Hints and How To: Helping you respond to living and dying issues during COVID-19 | Feature | 21
specialist skills, we have recognised • ‘This is such a great resource by
our responsibility to share our the NISCC – I will be passing it
knowledge and support on to different chaplaincy contacts
our communities. to make sure that they are up to
speed with it. Well done to you and
Social workers are specifically all involved. For such a helpful and
trained to support people, families accessible resource to be pulled
and communities at times of crisis, together in that time is stunning.’
regardless of the cause, so this is • ‘Really valuable messages that
second nature to us. The pandemic are relevant for everyone. I’m going
has put living and dying issues into to share the resource with all of
the spotlight and has emphasised their our professionals.’
relevance for everybody. • ‘This is indeed a lovely resource,
very nicely put together and
Evaluation I have no doubt it will be very
The NISCC resource was created in much required.’
a week to ensure timely support was
available. It is a privilege to know the Holding on to hope
resource has been so well received Throughout the pandemic, holding on
across Ireland and Scotland, as well to hope has been vital in keeping key
as in Northern Ireland. workers and members of the public
going. Hopefully, the lessons that we
These are some examples of feedback have learned about living and dying
from Health and Social Care Trust will help us all in the future.
colleagues in nursing, pharmacy,
chaplaincy, Macmillan Cancer Support
You can access this resource by
NI and Corporate Communications: The resource
visiting learningzone.niscc.info
provides short
and clicking on Learning Resources. videos with ideas
• ‘I watched all the video clips this
and information
morning and found them excellent
for anyone
and extremely helpful.’ trying to support
• ‘AMAZING…Tough watching but an others during the
excellent resource.’ pandemic.You can also read
